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Sample records for participatory health research

  1. Participatory Action Research in Health Systems: Empowering ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    2014-12-02

    Dec 2, 2014 ... Home · Resources · Publications ... A new publication, Participatory Action Research in Health Systems: a methods ... organizations, most African countries adopted direct payment for health services as the primary means.

  2. Promoting Community Health and Eliminating Health Disparities Through Community-Based Participatory Research.

    Science.gov (United States)

    Xia, Ruiping; Stone, John R; Hoffman, Julie E; Klappa, Susan G

    2016-03-01

    In physical therapy, there is increasing focus on the need at the community level to promote health, eliminate disparities in health status, and ameliorate risk factors among underserved minorities. Community-based participatory research (CBPR) is the most promising paradigm for pursuing these goals. Community-based participatory research stresses equitable partnering of the community and investigators in light of local social, structural, and cultural elements. Throughout the research process, the CBPR model emphasizes coalition and team building that joins partners with diverse skills/expertise, knowledge, and sensitivities. This article presents core concepts and principles of CBPR and the rationale for its application in the management of health issues at the community level. Community-based participatory research is now commonly used to address public health issues. A literature review identified limited reports of its use in physical therapy research and services. A published study is used to illustrate features of CBPR for physical therapy. The purpose of this article is to promote an understanding of how physical therapists could use CBPR as a promising way to advance the profession's goals of community health and elimination of health care disparities, and social responsibility. Funding opportunities for the support of CBPR are noted. © 2016 American Physical Therapy Association.

  3. Participatory action as a research method with public health nurses.

    Science.gov (United States)

    Cusack, Cheryl; Cohen, Benita; Mignone, Javier; Chartier, Mariette J; Lutfiyya, Zana

    2018-02-28

    This article explores and describes participatory action research (PAR) as a preferred method in addressing nursing practice issues. This is the first study that used PAR with public health nurses (PHNs) in Canada to develop a professional practice model. Participatory action research is a sub-category of action research that incorporates feminist and critical theory with foundations in the field of social psychology. For nurses, critical analysis of long-established beliefs and practices through PAR contributes to emancipatory knowledge regarding the impact of traditional hierarchies on their practice. This study used participatory action, a non-traditional but systematic research method, which assisted participants to develop a solution to a long-standing organizational issue. The stages of generating concerns, participatory action, acting on concerns, reflection and evaluation were implemented from 2012 - 2013 in an urban Canadian city, to develop a professional practice model for PHNs. Four sub-themes specific to PAR are discussed. These are "participatory action research engaged PHNs in development of a professional practice model;" "the participatory action research cycles of "Look, Think, Act" expanded participants' views;" "participatory action research increased awareness of organizational barriers;" and "participatory action research promoted individual empowerment and system transformation." This study resulted in individual and system change that may not have been possible without the use of PAR. The focus was engagement of participants and recognition of their lived experience, which facilitated PHNs' empowerment, leadership and consciousness-raising. © 2018 The Authors. Journal of Advanced Nursing Published by John Wiley & Sons Ltd.

  4. Participatory epidemiology: the contribution of participatory research to epidemiology

    Directory of Open Access Journals (Sweden)

    Mario Bach

    2017-02-01

    Full Text Available Abstract Background Epidemiology has contributed in many ways to identifying various risk factors for disease and to promoting population health. However, there is a continuing debate about the ability of epidemiology not only to describe, but also to provide results which can be better translated into public health practice. It has been proposed that participatory research approaches be applied to epidemiology as a way to bridge this gap between description and action. A systematic account of what constitutes participatory epidemiology practice has, however, been lacking. Methods A scoping review was carried out focused on the question of what constitutes participatory approaches to epidemiology for the purpose of demonstrating their potential for advancing epidemiologic research. Relevant databases were searched, including both the published and non-published (grey literature. The 102 identified sources were analyzed in terms of comparing common epidemiologic approaches to participatory counterparts regarding central aspects of the research process. Exemplary studies applying participatory approaches were examined more closely. Results A highly diverse, interdisciplinary body of literature was synthesized, resulting in a framework comprised of seven aspects of the research process: research goal, research question, population, context, data synthesis, research management, and dissemination of findings. The framework specifies how participatory approaches not only differ from, but also how they can enhance common approaches in epidemiology. Finally, recommendations for the further development of participatory approaches are given. These include: enhancing data collection, data analysis, and data validation; advancing capacity building for research at the local level; and developing data synthesis. Conclusion The proposed framework provides a basis for systematically developing the emergent science of participatory epidemiology.

  5. Integrating Participatory Design and Health Literacy to Improve Research and Interventions.

    Science.gov (United States)

    Neuhauser, Linda

    2017-01-01

    Health communication is an essential health promotion strategy to convert scientific findings into actionable, empowering information for the public. Health communication interventions have shown positive outcomes, but many efforts have been disappointing. A key weakness is that expert-designed health communication is often overly generic and not adequately aligned with the abilities, preferences and life situations of specific audiences. The emergence of the field of health literacy is providing powerful theoretical guidance and practice strategies. Health literacy, in concert with other determinants of health, has greatly advanced understanding of factors that facilitate or hinder health promotion at individual, organizational and community settings. However, health literacy models are incomplete and interventions have shown only modest success to date. A challenge is to move beyond the current focus on individual comprehension and address deeper factors of motivation, self-efficacy and empowerment, as well as socio-environmental influences, and their impact to improve health outcomes and reduce health disparities. Integrating participatory design theory and methods drawn from social sciences and design sciences can significantly improve health literacy models and interventions. Likewise, researchers and practitioners using participatory design can greatly benefit from incorporating health literacy principles into their efforts. Such interventions at multiple levels are showing positive health outcomes and reduction of health disparities, but this approach is complex and not yet widespread. This chapter focuses on research findings about health literacy and participatory design to improve health promotion, and practical guidance and case examples for researchers, practitioners and policymakers.

  6. Participatory research design in mobile health: Tablet devices for diabetes self-management.

    Science.gov (United States)

    Burford, Sally; Park, Sora; Dawda, Paresh; Burns, John

    2015-01-01

    Type 2 diabetes is a prevalent, chronic disease, which places significant burden on societies and individuals. This article reports the participatory research design of an exploratory study that introduces mobile tablet devices in the self-management of type 2 diabetes in a primary healthcare setting. Strategies from democratic dialogic theory were used in the design of the research to steer the participatory engagement between researchers and healthcare practitioners. The outcome of this phase of the research was the issue of six ‘invitations’ to 28 people with diabetes to frame their use of a mobile tablet device in managing their health. Those invitations were clustered in two themes, Empowered and Compelled, representing typical patient attitudes and behaviours. The work reported here sets the stage for a longitudinal and socially complex study that encompasses a new and comprehensive General Practitioner (GP) Super Clinic with an array of health and administrative staff, patients with a chronic health condition requiring continual self-management, a wide continuum of digital literacy capability in all participants and an ever-increasing digital society. It reports a novel research design methodology that merges democratic dialogic theory and participatory design, resulting in a grounded and agreed approach to a mobile health intervention.

  7. Participatory Action Research in Health Systems: Empowering ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    2 déc. 2014 ... For example, when staff at TARSC asked people in participatory ... The reader includes several examples of successful participatory action research. ... au forum « Think Big: Women in Business » à Delhi, le 9 octobre 2015.

  8. Participatory action research in the training of primary health care ...

    African Journals Online (AJOL)

    Participatory action research in the training of primary health care nurses in Venda. ... who had been part of the nurse training programme with clinic attenders. ... enough access to financial decision making and were therefore powerless to ...

  9. Innovating for Transformation in First Nations Health Using Community-Based Participatory Research.

    Science.gov (United States)

    Kyoon-Achan, Grace; Lavoie, Josée; Avery Kinew, Kathi; Phillips-Beck, Wanda; Ibrahim, Naser; Sinclair, Stephanie; Katz, Alan

    2018-06-01

    Community-based participatory research (CBPR) provides the opportunity to engage communities for sustainable change. We share a journey to transformation in our work with eight Manitoba First Nations seeking to improve the health of their communities and discuss lessons learned. The study used community-based participatory research approach for the conceptualization of the study, data collection, analysis, and knowledge translation. It was accomplished through a variety of methods, including qualitative interviews, administrative health data analyses, surveys, and case studies. Research relationships built on strong ethics and protocols to enhance mutual commitment to support community-driven transformation. Collaborative and respectful relationships are platforms for defining and strengthening community health care priorities. We further discuss how partnerships were forged to own and sustain innovations. This article contributes a blueprint for respectful CBPR. The outcome is a community-owned, widely recognized process that is sustainable while fulfilling researcher and funding obligations.

  10. Participatory action research in the training of primary health care ...

    African Journals Online (AJOL)

    Background: The aim of this study was to understand and be part of a process of change in the training of primary health care nurses in Venda. Methods:Because participatory action research (PAR), which is an emancipatory-critical paradigm, to a great extent shares the same worldview as adult education and sustainable ...

  11. Indigenous community based participatory research and health impact assessment: A Canadian example

    International Nuclear Information System (INIS)

    Kwiatkowski, Roy E.

    2011-01-01

    The Environmental Health Research Division (EHRD) of the First Nations and Inuit Health Branch, Health Canada conducts science-based activities and research with Canadian Indigenous communities in areas such as climate change adaptation, environmental contaminants, water quality, biomonitoring, risk assessment, health impact assessment, and food safety and nutrition. EHRD's research activities have been specifically designed to not only inform Health Canada's policy decision-makers but as well, Indigenous community decision-makers. This paper will discuss the reasons why Indigenous community engagement is important, what are some of the barriers preventing community engagement; and the efforts by EHRD to carry out community-based participatory research activities with Indigenous peoples.

  12. Participatory methods in pediatric participatory research: a systematic review.

    Science.gov (United States)

    Haijes, Hanneke A; van Thiel, Ghislaine J M W

    2016-05-01

    Meaningful child participation in medical research is seen as important. In order to facilitate further development of participatory research, we performed a systematic literature study to describe and assess the available knowledge on participatory methods in pediatric research. A search was executed in five databases: PubMed, CINAHL, PsycINFO, Scopus, and Cochrane. After careful screening of relevant papers, finally 24 documents were included in our analysis. Literature on participatory methods in pediatric research appears generally to be descriptive, whereby high-quality evidence is lacking. Overall, five groups of participatory methods for children could be distinguished: observational, verbal, written, visual, and active methods. The choice for one of these methods should be based on the child's age, on social and demographic characteristics, and on the research objectives. To date, these methods are still solely used for obtaining data, yet they are suitable for conducting meaningful participation. This may result in a successful partnership between children and researchers. Researchers conducting participatory research with children can use this systematic review in order to weigh the current knowledge about the participatory methods presented.

  13. Participatory action research: considerations for ethical review.

    Science.gov (United States)

    Khanlou, N; Peter, E

    2005-05-01

    This paper addresses the distinctive nature of participatory action research (PAR) in relation to ethical review requirements. As a framework for conducting research and reducing health disparities, PAR is gaining increased attention in community and public health research. As a result, PAR researchers and members of Research Ethics Boards could benefit from an increased understanding of the array of ethical concerns that can arise. We discuss these concerns in light of commonly held ethical requirements for clinical research (social or scientific value, scientific validity, fair subject/participant selection, favourable risk-benefit ratio, independent review, informed consent, and respect for potential and enrolled participants) and refer to guidelines specifically developed for participatory research in health promotion. We draw from our community-based experiences in mental health promotion research with immigrant and culturally diverse youth to illustrate the ethical advantages and challenges of applying a PAR approach. We conclude with process suggestions for Research Ethics Boards.

  14. A participatory action research approach to strengthening health managers' capacity at district level in Eastern Uganda.

    Science.gov (United States)

    Tetui, Moses; Coe, Anna-Britt; Hurtig, Anna-Karin; Bennett, Sara; Kiwanuka, Suzanne N; George, Asha; Kiracho, Elizabeth Ekirapa

    2017-12-28

    Many approaches to improving health managers' capacity in poor countries, particularly those pursued by external agencies, employ non-participatory approaches and often seek to circumvent (rather than strengthen) weak public management structures. This limits opportunities for strengthening local health managers' capacity, improving resource utilisation and enhancing service delivery. This study explored the contribution of a participatory action research approach to strengthening health managers' capacity in Eastern Uganda. This was a qualitative study that used open-ended key informant interviews, combined with review of meeting minutes and observations to collect data. Both inductive and deductive thematic analysis was undertaken. The Competing Values Framework of organisational management functions guided the deductive process of analysis and the interpretation of the findings. The framework builds on four earlier models of management and regards them as complementary rather than conflicting, and identifies four managers' capacities (collaborate, create, compete and control) by categorising them along two axes, one contrasting flexibility versus control and the other internal versus external organisational focus. The findings indicate that the participatory action research approach enhanced health managers' capacity to collaborate with others, be creative, attain goals and review progress. The enablers included expanded interaction spaces, encouragement of flexibility, empowerment of local managers, and the promotion of reflection and accountability. Tension and conflict across different management functions was apparent; for example, while there was a need to collaborate, maintaining control over processes was also needed. These tensions meant that managers needed to learn to simultaneously draw upon and use different capacities as reflected by the Competing Values Framework in order to maximise their effectiveness. Improved health manager capacity is

  15. African Primary Care Research: Participatory action research

    OpenAIRE

    Mash, Bob

    2014-01-01

    This article is part of the series on African primary care research and focuses on participatory action research. The article gives an overview of the emancipatory-critical research paradigm, the key characteristics and different types of participatory action research. Following this it describes in detail the methodological issues involved in professional participatory action research and running a cooperative inquiry group. The article is intended to help students with writing their researc...

  16. Impact of Participatory Health Research: A Test of the Community-Based Participatory Research Conceptual Model

    Directory of Open Access Journals (Sweden)

    John G. Oetzel

    2018-01-01

    Full Text Available Objectives. A key challenge in evaluating the impact of community-based participatory research (CBPR is identifying what mechanisms and pathways are critical for health equity outcomes. Our purpose is to provide an empirical test of the CBPR conceptual model to address this challenge. Methods. A three-stage quantitative survey was completed: (1 294 US CBPR projects with US federal funding were identified; (2 200 principal investigators completed a questionnaire about project-level details; and (3 450 community or academic partners and principal investigators completed a questionnaire about perceived contextual, process, and outcome variables. Seven in-depth qualitative case studies were conducted to explore elements of the model not captured in the survey; one is presented due to space limitations. Results. We demonstrated support for multiple mechanisms illustrated by the conceptual model using a latent structural equation model. Significant pathways were identified, showing the positive association of context with partnership structures and dynamics. Partnership structures and dynamics showed similar associations with partnership synergy and community involvement in research; both of these had positive associations with intermediate community changes and distal health outcomes. The case study complemented and extended understandings of the mechanisms of how partnerships can improve community conditions. Conclusions. The CBPR conceptual model is well suited to explain key relational and structural pathways for impact on health equity outcomes.

  17. Community-Based Participatory Research to Improve Preconception Health among Northern Plains American Indian Adolescent Women

    Science.gov (United States)

    Richards, Jennifer; Mousseau, Alicia

    2012-01-01

    Background: Sacred Beginnings is a community-based participatory research project that examines the effectiveness of a culturally appropriate preconception health educational intervention developed by tribal community members and elders. The primary goal is to increase knowledge of preconception health and its benefits among adolescent females and…

  18. Initiating a participatory action research process in the Agincourt health and socio-demographic surveillance site.

    Science.gov (United States)

    Wariri, Oghenebrume; D'Ambruoso, Lucia; Twine, Rhian; Ngobeni, Sizzy; van der Merwe, Maria; Spies, Barry; Kahn, Kathleen; Tollman, Stephen; Wagner, Ryan G; Byass, Peter

    2017-06-01

    Despite progressive health policy, disease burdens in South Africa remain patterned by deeply entrenched social inequalities. Accounting for the relationships between context, health and risk can provide important information for equitable service delivery. The aims of the research were to initiate a participatory research process with communities in a low income setting and produce evidence of practical relevance. We initiated a participatory action research (PAR) process in the Agincourt health and socio-demographic surveillance site (HDSS) in rural north-east South Africa. Three village-based discussion groups were convened and consulted about conditions to examine, one of which was under-5 mortality. A series of discussions followed in which routine HDSS data were presented and participants' subjective perspectives were elicited and systematized into collective forms of knowledge using ranking, diagramming and participatory photography. The process concluded with a priority setting exercise. Visual and narrative data were thematically analyzed to complement the participants' analysis. A range of social and structural root causes of under-5 mortality were identified: poverty, unemployment, inadequate housing, unsafe environments and shortages of clean water. Despite these constraints, single mothers were often viewed as negligent. A series of mid-level contributory factors in clinics were also identified: overcrowding, poor staffing, delays in treatment and shortages of medications. In a similar sense, pronounced blame and negativity were directed toward clinic nurses in spite of the systems constraints identified. Actions to address these issues were prioritized as: expanding clinics, improving accountability and responsiveness of health workers, improving employment, providing clean water, and expanding community engagement for health promotion. We initiated a PAR process to gain local knowledge and prioritize actions. The process was acceptable to those

  19. Health Participatory Sensing Networks

    Directory of Open Access Journals (Sweden)

    Andrew Clarke

    2014-01-01

    Full Text Available The use of participatory sensing in relation to the capture of health-related data is rapidly becoming a possibility due to the widespread consumer adoption of emerging mobile computing technologies and sensing platforms. This has the potential to revolutionize data collection for population health, aspects of epidemiology, and health-related e-Science applications and as we will describe, provide new public health intervention capabilities, with the classifications and capabilities of such participatory sensing platforms only just beginning to be explored. Such a development will have important benefits for access to near real-time, large-scale, up to population-scale data collection. However, there are also numerous issues to be addressed first: provision of stringent anonymity and privacy within these methodologies, user interface issues, and the related issue of how to incentivize participants and address barriers/concerns over participation. To provide a step towards describing these aspects, in this paper we present a first classification of health participatory sensing models, a novel contribution to the literature, and provide a conceptual reference architecture for health participatory sensing networks (HPSNs and user interaction example case study.

  20. Increasing Critical Health Literacy of Roma People trough Participatory Action Research

    DEFF Research Database (Denmark)

    Eklund Karlsson, Leena; Crondahl, Kristine

    to take a leading role in their integration process a 2-year action research was implemented in 2010-2012. The idea was to strengthen the Roma Peoples’ critical health literacy which allows them to analyze and apply health information to oppose the forces that are holding them oppressed and to take better...... control over their life situation. The objective of this paper is to discuss methodological issues based on experiences of the use of participatory research approach in increasing health literacy. Methods: The core of the intervention was ‘training of trainers’ of a group of Roma people from western....... Conclusions: The Roma participants’ strengthened critical health literacy improved their health chances and possibilities for participation in working life and decision making on Roma issues. The existing system of rules for project operations clashed with the character of the “soft” bottom-up approach...

  1. Tackling perinatal loss, a participatory action research approach: research protocol.

    Science.gov (United States)

    Pastor-Montero, Sonia María; Romero-Sánchez, José Manuel; Paramio-Cuevas, Juan Carlos; Hueso-Montoro, César; Paloma-Castro, Olga; Lillo-Crespo, Manuel; Castro-Yuste, Cristina; Toledano-Losa, Ana Cristina; Carnicer-Fuentes, Concepción; Ortegón-Gallego, José Alejo; Frandsen, Anna J

    2012-11-01

      The aim of this study was to promote changes to improve the care provided to parents who have experienced a perinatal loss through participatory action research.   The birth of a child is a joyful event for most families, however, unfortunately some pregnancies end in loss. Perinatal loss creates a heavy emotional impact not only on parents but also on health professionals, where in most cases there is an evident lack of skills, strategies and resources to cope with these kinds of situations.   Participatory action research is the methodology proposed to achieve the purpose of this study.   Participatory action research consists of five stages: outreach and awareness, induction, interaction, implementation and systematization. The working group will include professionals from the Mother and Child Unit for patients at a tertiary level public hospital in Spain. The duration of the study will be 3 years since the approval of the protocol in January 2011. The qualitative techniques used will include group dynamics such as the SWOT analysis the nominal group technique, focus groups and brainstorming, among others that will be recorded and transcribed, generating reports throughout the evolution of the group sessions and about the consensus reached. Content analysis will be conducted on the field diaries kept by the participants and researchers. This project has been funded by the Andalusian Regional Ministry of Health.   Participatory action research is a methodological strategy that allows changes in clinical practice to conduct a comprehensive transformative action in the care process for perinatal loss. © 2012 Blackwell Publishing Ltd.

  2. Participatory Design & Health Information Technology

    DEFF Research Database (Denmark)

    Health Information Technology (HIT) continues to increase in importance as a component of healthcare provision, but designing HIT is complex. The creation of cooperative learning processes for future HIT users is not a simple task. The importance of engaging end users such as health professionals......, in collaboration with a wide range of people, a broad repertoire of methods and techniques to apply PD within multiple domains has been established. This book, Participatory Design & Health Information Technology, presents the contributions of researchers from 5 countries, who share their experience and insights......, patients and relatives in the design process is widely acknowledged, and Participatory Design (PD) is the primary discipline for directly involving people in the technological design process. Exploring the application of PD in HIT is crucial to all those involved in engaging end users in HIT design and...

  3. Participatory Research and Development for Sustainable Agriculture ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    It is crucial, for example, that local stakeholders provide input to the process. Participatory research and ... Participatory Research and Development for Sustainable Agriculture and Natural Resource Management - A Sourcebook Volume 2: Enabling Participatory Research and Development. Book cover Participatory ...

  4. Moving Beyond "Health Education": Participatory Filmmaking for Cross-Cultural Health Communication.

    Science.gov (United States)

    Zemits, Birut; Maypilama, Lawurrpa; Wild, Kayli; Mitchell, Alice; Rumbold, Alice

    2015-01-01

    In the process of developing short films with women in Australian Aboriginal (Yolŋu) communities in northeast Arnhem Land, questions arose about how the content and the process of production were defined and adjusted to suit both parties. This research examines how filmmakers take roles as health educators and how Yolŋu women as the "actors" define and direct the film. It explores ways that the filmmakers tried to ensure that Yolŋu identity was maintained in a biomedical agenda through the use of storytelling in language. An important dialogue develops regarding ownership and negotiation of health information and knowledge, addressing this intersection in a way that truly characterizes the spirit of community-based participatory research. Although the filmmaking processes were initially analyzed in the context of feminist and educational empowerment theories, we conclude that Latour's (2005) theory of actor networks leads to a more coherent way to explore participatory filmmaking as a health education tool. The analysis in this work provides a framework to integrate health communication, Indigenous women's issues, and filmmaking practices. In contrasting participatory filmmaking with health promotion and ethnographic film, the importance of negotiating the agenda is revealed.

  5. African Americans, democracy, and biomedical and behavioral research: contradictions or consensus in community-based participatory research?

    Science.gov (United States)

    Spigner, C

    Individualism, in both its political and attitudinal senses, reinforces societal and institutional racism in the United States. Because of individualism's dominant focus on self-interest and self-reliance, any application of "participatory democracy" in community-based biomedical and behavioral research is fraught with dilemmas similar to those that Gunnar Myrdal observed between American racism and democracy. The research establishment is overwhelmed by well-meaning non-minorities who recognize racism and its consequences in health, but only greater representation of people-of-color in the health establishment can ameliorate the inherent contradictions of "participatory democracy" which is so fundamental to the process of community-based participatory research.

  6. Participatory Research and Development for Sustainable Agriculture ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    Participatory Research and Development for Sustainable Agriculture and Natural Resource Management - A Sourcebook Volume 3 : Doing Participatory Research and Development. Couverture du livre Participatory Research and Development for Sustainable Agriculture and Natural Resource Management : A.

  7. Experiences in Broker-Facilitated Participatory Cross-Cultural Research

    Directory of Open Access Journals (Sweden)

    Stephanie P. Kowal

    2017-05-01

    Full Text Available Health researchers are increasingly using community-based participatory research approaches because of the benefits accrued through ongoing community engagement. The documentation of our research partnership highlights key ethical and analytical challenges researchers face in participatory research, particularly in projects partnering with service providers or cultural brokers in cross-cultural settings. In this article, we describe how choices made to accommodate a participatory research approach in the examination of vaccination behavior impacted the process and outcomes of our qualitative inquiries. First, we found that employing multiple interviewers influenced the breadth of discussion topics, thus reducing the ability to achieve saturation in small study populations. This was mitigated by (a having two people at each interview and (b using convergent interviewing, a technique in which multiple interviewers discuss and include concepts raised in interviews in subsequent interviews to test the validity of interview topics. Second, participants were less engaged during the informed consent process if they knew the interviewer before the interview commenced. Finally, exposing identity traits, such as age or immigration status, before the interview affected knowledge cocreation, as the focus of the conversation then mirrored those traits. For future research, we provide recommendations to reduce ethical and analytical concerns that arise with qualitative interview methods in participatory research. Specifically, we provide guidance to ensure ethical informed consent processes and rigorous interview techniques.

  8. Participatory design based research

    DEFF Research Database (Denmark)

    Dau, Susanne; Bach Jensen, Louise; Falk, Lars

    This poster reveal how participatory design based research by the use of a CoED inspired creative process can be used for designing solutions to problems regarding students study activities outside campus.......This poster reveal how participatory design based research by the use of a CoED inspired creative process can be used for designing solutions to problems regarding students study activities outside campus....

  9. [Application of participatory teaching mode in oral health education].

    Science.gov (United States)

    Ci, Xiang-ke; Zhao, Yu-hong; Wan, Li; Xiong, Wei; Wang, Yu-jiang; Ou, Xiao-yan

    2013-06-01

    To apply participatory teaching mode in oral health education, and to assess its role in cultivating comprehensive stomatological professionals suitable for the development of modern medicine. Sixty undergraduate students from grade 2005 in Stomatological College of Nanchang University were selected. Among those students, oral health education course was carried out by traditional teaching mode, while 120 undergraduate students from grades 2006 to 2007 received participatory teaching approach, which paid attention to practice in oral health education practice course. After the course, a survey and evaluation of teaching effectiveness was conducted. Questionnaire survey showed that participatory teaching mode could significantly improve the students' capabilities and provide much more help to their study. Application of participatory teaching mode in oral health education course for undergraduates is feasible. It can improve students' comprehensive ability and cultivate their cultural literacy and scientific literacy. It also meets the training goal of stomatological professionals and the development trend of education reform. Supported by Higher School Teaching Reform Research Subject of Jiangxi Province(JXJG-10-1-42).

  10. Exploring social inclusion strategies for public health research and practice: The use of participatory visual methods to counter stigmas surrounding street-based substance abuse in Colombia.

    Science.gov (United States)

    Ritterbusch, Amy E

    2016-01-01

    This paper presents the participatory visual research design and findings from a qualitative assessment of the social impact of bazuco and inhalant/glue consumption among street youth in Bogotá, Colombia. The paper presents the visual methodologies our participatory action research (PAR) team employed in order to identify and overcome the stigmas and discrimination that street youth experience in society and within state-sponsored drug rehabilitation programmes. I call for critical reflection regarding the broad application of the terms 'participation' and 'participatory' in visual research and urge scholars and public health practitioners to consider the transformative potential of PAR for both the research and practice of global public health in general and rehabilitation programmes for street-based substance abuse in Colombia in particular. The paper concludes with recommendations as to how participatory visual methods can be used to promote social inclusion practices and to work against stigma and discrimination in health-related research and within health institutions.

  11. Visual methodologies and participatory action research: Performing women's community-based health promotion in post-Katrina New Orleans.

    Science.gov (United States)

    Lykes, M Brinton; Scheib, Holly

    2016-01-01

    Recovery from disaster and displacement involves multiple challenges including accompanying survivors, documenting effects, and rethreading community. This paper demonstrates how African-American and Latina community health promoters and white university-based researchers engaged visual methodologies and participatory action research (photoPAR) as resources in cross-community praxis in the wake of Hurricane Katrina and the flooding of New Orleans. Visual techniques, including but not limited to photonarratives, facilitated the health promoters': (1) care for themselves and each other as survivors of and responders to the post-disaster context; (2) critical interrogation of New Orleans' entrenched pre- and post-Katrina structural racism as contributing to the racialised effects of and responses to Katrina; and (3) meaning-making and performances of women's community-based, cross-community health promotion within this post-disaster context. This feminist antiracist participatory action research project demonstrates how visual methodologies contributed to the co-researchers' cross-community self- and other caring, critical bifocality, and collaborative construction of a contextually and culturally responsive model for women's community-based health promotion post 'unnatural disaster'. Selected limitations as well as the potential for future cross-community antiracist feminist photoPAR in post-disaster contexts are discussed.

  12. Using the Delphi Method for Qualitative, Participatory Action Research in Health Leadership

    Directory of Open Access Journals (Sweden)

    Amber J. Fletcher PhD

    2014-02-01

    Full Text Available Current pressures on public health systems have led to increased emphasis on restructuring, which is seen as a potential solution to crises of accessibility, quality, and funding. Leadership is an important factor in the success or failure of these initiatives. Despite its importance, health leadership evades easy articulation, and its study requires a thoughtful methodological approach. We used a modified Delphi method in a Participatory Action Research (PAR project on health leadership in Canada. Little has been written about the combination of Delphi method with PAR. We offer a rationale for the combination and describe its usefulness in researching the role of leadership in a restructuring initiative in “real time” with the participation of health system decision makers. Recommendations are provided to researchers wishing to use the Delphi method qualitatively (i.e., without statistical consensus in a PAR framework while protecting the confidentiality of participants who work at different levels of authority. We propose a modification of Kaiser's (2009 post-interview confidentiality form to address power differentials between participants and to enhance confidentiality in the PAR process.

  13. Self-Regulation of a Chiropractic Association through Participatory Action Research

    Science.gov (United States)

    Sheppard, Lorraine A.; Jorgensen, Anna Maria S.; Crowe, Michael J.

    2012-01-01

    Participatory action research (PAR) can be used in the health professions to redefine their roles. This study investigated a small health professional group, the members of The Chiropractic Association Singapore (TCAS), by using a PAR method; researchers and participants gained insights into the self-regulation of a health profession. A…

  14. Shaping Core Health Messages: Rural, Low-Income Mothers Speak Through Participatory Action Research.

    Science.gov (United States)

    Mammen, Sheila; Sano, Yoshie; Braun, Bonnie; Maring, Elisabeth Fost

    2018-04-23

    Rural, low-income families are disproportionately impacted by health problems owing to structural barriers (e.g., transportation, health insurance coverage) and personal barriers (e.g., health literacy). This paper presents a Participatory Action Research (PAR) model of co-created Core Health Messages (CHMs) in the areas of dental health, food security, health insurance, and physical activity. The research project engaged a multi-disciplinary team of experts to design initial health messages; rural, low-income mothers to respond to, and co-create, health messages; and stakeholders who work with families to share their insights. Findings reveal the perceptions of mothers and community stakeholders regarding messages and channels of message dissemination. By using PAR, a learner engagement approach, the researchers intend to increase the likelihood that the CHMs are culturally appropriate and relevant to specific populations. The CHM-PAR model visually illustrates an interactive, iterative process of health message generation and testing. The paper concludes with implications for future research and outreach in a technological landscape where dissemination channels are dynamic. This paper provides a model for researchers and health educators to co-create messages in a desired format (e.g., length, voice, level of empathy, tone) preferred by their audiences and to examine dissemination methods that will best reach those audiences.

  15. Development of project wings home visits, a mental health intervention for Latino families using community-based participatory research.

    Science.gov (United States)

    Garcia, Carolyn; Hermann, Denise; Bartels, Anna; Matamoros, Pablo; Dick-Olson, Linda; Guerra de Patino, Janeth

    2012-11-01

    As the Latino population in the United States experiences rapid growth, the well-being of Latino adolescents is a growing concern because of their high rates of mental health problems. Latino adolescents have higher rates of mental health problems than their peers, including depressive symptoms, suicide attempts, and violence. Sophisticated, realistic health promotion efforts are needed to reduce these risk behaviors and enhance protective factors. Parents and schools can be key protective factors, or assets, in adolescents' lives. This article details the steps undertaken to develop Project Wings Home Visits, a collaborative school-based, community-linked mental health promotion intervention for Latino adolescents and their families. Core to the intervention is the use of a community health worker model to provide home-based outreach and education to parents of Latino adolescents. The intervention was developed using a community-based participatory research approach that involved the cooperation of a community health care system, a public high school, and a university. Our process demonstrates the benefits, strengths, and challenges of using community-based participatory research in creating and implementing health promotion interventions.

  16. Developments in Participatory Design of Health Information Technology

    DEFF Research Database (Denmark)

    Kanstrup, Anne Marie; Madsen, Jacob; Nøhr, Christian

    2017-01-01

    The landscape of Participatory Design (PD) of Health Information Technology (HIT) is diverse and constantly evolving. This paper reviews the publications in the proceedings from the Participatory Design Conferences (PDCs) that have been held every two years since 1990. We used the Matrix Method...... procedures, records, secondary healthcare and health professionals. However, the analysis also shows a development from a primary focus on health workers and hospitals to a recent attention on HIT in everyday life and PD with patients, relatives, neighbourhoods and citizens in general. Additionally......, the review shows a growing number of PD methods being applied. This paper concludes that research on PD and HIT appears to be maturing and developing with ongoing technological and societal development....

  17. Participatory action research in corrections: The HITEC 2 program.

    Science.gov (United States)

    Cherniack, Martin; Dussetschleger, Jeffrey; Dugan, Alicia; Farr, Dana; Namazi, Sara; El Ghaziri, Mazen; Henning, Robert

    2016-03-01

    HITEC 2 (Health Improvement through Employee Control 2) is the follow-up to HITEC, a participatory action research (PAR) program that integrates health and work conditions interventions designed by the workforce. HITEC 2 compares intervention programs between two correctional sites, one using a pure workforce level design team and the other using a more structured and time delineated labor-management kaizen effectiveness team. HITEC 2 utilizes a seven step participatory Intervention Design and Analysis Scorecard (IDEAS) for planning interventions. Consistent with PAR, process and intervention efficacy measures are developed and administered through workforce representation. Participation levels, robustness of participatory structures and sophistication of interventions have increased at each measured interval. Health comparisons between 2008 and 2013 showed increased hypertension, static weight maintenance, and increased 'readiness to change'. The PAR approaches are robust and sustained. Their long-term effectiveness in this population is not yet clear. Copyright © 2015 Elsevier Ltd and The Ergonomics Society. All rights reserved.

  18. The Article Idea Chart: A participatory action research tool to aid involvement in dissemination

    Directory of Open Access Journals (Sweden)

    Cheryl Forchuk

    2014-06-01

    Full Text Available Participatory-action research encourages the involvement of all key stakeholders in the research process and is especially well suited to mental health research. Previous literature outlines the importance of engaging stakeholders in the development of research questions and methodologies, but little has been written about ensuring the involvement of all stakeholders (especially non-academic members in dissemination opportunities such as publication development. The Article Idea Chart was developed as a specific methodology for engaging all stakeholders in data analysis and publication development. It has been successfully utilised in a number of studies and is an effective tool for ensuring the dissemination process of participatory-action research results is both inclusive and transparent to all team members, regardless of stakeholder group. Keywords: participatory-action research, mental health, dissemination, community capacity building, publications, authorship

  19. Evaluating Community-Based Participatory Research to Improve Community-Partnered Science and Community Health

    Science.gov (United States)

    Hicks, Sarah; Duran, Bonnie; Wallerstein, Nina; Avila, Magdalena; Belone, Lorenda; Lucero, Julie; Magarati, Maya; Mainer, Elana; Martin, Diane; Muhammad, Michael; Oetzel, John; Pearson, Cynthia; Sahota, Puneet; Simonds, Vanessa; Sussman, Andrew; Tafoya, Greg; Hat, Emily White

    2013-01-01

    Background Since 2007, the National Congress of American Indians (NCAI) Policy Research Center (PRC) has partnered with the Universities of New Mexico and Washington to study the science of community-based participatory research (CBPR). Our goal is to identify facilitators and barriers to effective community–academic partnerships in American Indian and other communities, which face health disparities. Objectives We have described herein the scientific design of our National Institutes of Health (NIH)-funded study (2009–2013) and lessons learned by having a strong community partner leading the research efforts. Methods The research team is implementing a mixed-methods study involving a survey of principal investigators (PIs) and partners across the nation and in-depth case studies of CBPR projects. Results We present preliminary findings on methods and measures for community-engaged research and eight lessons learned thus far regarding partnership evaluation, advisory councils, historical trust, research capacity development of community partner, advocacy, honoring each other, messaging, and funding. Conclusions Study methodologies and lessons learned can help community–academic research partnerships translate research in communities. PMID:22982842

  20. Participatory Research: New Approaches to the Research to Practice Dilemma.

    Science.gov (United States)

    Meyer, Luanna H.; Park, Hyun-Sook; Grenot-Scheyer, Marquita; Schwartz, Ilene; Harry, Beth

    1998-01-01

    This article presents a rationale for incorporating elements of participatory research approaches into intervention research intended to improve practice. After an overview of the research-to-practice problem, it illustrates how the incorporation of participatory research approaches applied to various decision points can enhance the construction…

  1. Healthcare for migrants, participatory health research and implementation science--better health policy and practice through inclusion. The RESTORE project.

    Science.gov (United States)

    MacFarlane, Anne; O'Reilly-de Brún, Mary; de Brún, Tomas; Dowrick, Christopher; O'Donnell, Catherine; Mair, Frances; Spiegel, Wolfgang; van den Muijsenbergh, Maria; van Weel Baumgarten, Evelyn; Lionis, Christos; Clissmann, Ciaran

    2014-06-01

    This is a time of unprecedented mobility across the globe. Healthcare systems need to adapt to ensure that primary care is culturally and linguistically appropriate for migrants. Evidence-based guidelines and training interventions for cultural competence and the use of professional interpreters are available across European healthcare settings. However, in real-world practice migrants and their healthcare providers 'get by' with a range of informal and inadequate strategies. RESTORE is an EU FP7 funded project, which is designed to address this translational gap. The objective of RESTORE is to investigate and support the implementation of guidelines and training initiatives to support communication in cross-cultural consultations in selected European primary care settings. RESTORE is a qualitative, participatory health project running from 2011-2015. It uses a novel combination of normalization process theory and participatory learning and action research to follow and shape the implementation journeys of relevant guidelines and training initiatives. Research teams in Ireland, England, the Netherlands, Austria and Greece are conducting similar parallel qualitative case study fieldwork, with a complementary health policy analysis led by Scotland. In each setting, key stakeholders, including migrants, are involved in participatory data generation and analysis. RESTORE will provide knowledge about the levers and barriers to the implementation of guidelines and training initiatives in European healthcare settings and about successful, transferrable strategies to overcome identified barriers. RESTORE will elucidate the role of policy in shaping these implementation journeys; generate recommendations for European policy driving the development of culturally and linguistically appropriate healthcare systems.

  2. Participatory action research: The key to successful implementation ...

    African Journals Online (AJOL)

    Unfortunately many of these innovative changes in training have met resistance from lecturers and students simply because they are just imposed on them. One way of ensuring acceptability and success of innovative and evidence-based training methods in health sciences could be the use of participatory action research ...

  3. [Concept analysis of a participatory approach to occupational safety and health].

    Science.gov (United States)

    Yoshikawa, Etsuko

    2013-01-01

    The purpose of this study was to analyze a participatory approach to occupational safety and health, and to examine the possibility of applying the concept to the practice and research of occupational safety and health. According to Rodger's method, descriptive data concerning antecedents, attributes and consequences were qualitatively analyzed. A total of 39 articles were selected for analysis. Attributes with a participatory approach were: "active involvement of both workers and employers", "focusing on action-oriented low-cost and multiple area improvements based on good practices", "the process of emphasis on consensus building", and "utilization of a local network". Antecedents of the participatory approach were classified as: "existing risks at the workplace", "difficulty of occupational safety and health activities", "characteristics of the workplace and workers", and "needs for the workplace". The derived consequences were: "promoting occupational safety and health activities", "emphasis of self-management", "creation of safety and healthy workplace", and "contributing to promotion of quality of life and productivity". A participatory approach in occupational safety and health is defined as, the process of emphasis on consensus building to promote occupational safety and health activities with emphasis on self-management, which focuses on action-oriented low-cost and multiple area improvements based on good practices with active involvement of both workers and employers through utilization of local networks. We recommend that the role of the occupational health professional be clarified and an evaluation framework be established for the participatory approach to promote occupational safety and health activities by involving both workers and employers.

  4. The DEPICT model for participatory qualitative health promotion research analysis piloted in Canada, Zambia and South Africa.

    Science.gov (United States)

    Flicker, Sarah; Nixon, Stephanie A

    2015-09-01

    Health promotion researchers are increasingly conducting Community-Based Participatory Research in an effort to reduce health disparities. Despite efforts towards greater inclusion, research teams continue to regularly exclude diverse representation from data analysis efforts. The DEPICT model for collaborative qualitative analysis is a democratic approach to enhancing rigour through inclusion of diverse stakeholders. It is broken down into six sequential steps. Strong leadership, coordination and facilitation skills are needed; however, the process is flexible enough to adapt to most environments and varying levels of expertise. Including diverse stakeholders on an analysis team can enrich data analysis and provide more nuanced understandings of complicated health problems. © The Author (2014). Published by Oxford University Press.

  5. Participatory Ethnographic Evaluation and Research: Reflections on the Research Approach Used to Understand the Complexity of Maternal Health Issues in South Sudan.

    Science.gov (United States)

    Elmusharaf, Khalifa; Byrne, Elaine; Manandhar, Mary; Hemmings, Joanne; O'Donovan, Diarmuid

    2017-07-01

    Many methodological approaches have been used to understand cultural dimensions to maternal health issues. Although a well-designed quantitative survey with a representative sample can provide essential information on trends in behavior, it does not necessarily establish a contextualized understanding of the complexity in which different behaviors occur. This article addresses how contextualized data can be collected in a short time and under conditions in which participants in conflict-affected zones might not have established, or time to establish, trust with the researchers. The solution, the Participatory Ethnographic Evaluation and Research (PEER) approach, is illustrated through a study whereby South Sudanese marginalized women were trained to design research instruments, and collect and analyze qualitative data. PEER overcomes the problem that many ethnographic or participatory approaches face-the extensive time and resources required to develop trusting relationships with the community to understand the local context and the social networks they form.

  6. Participatory Research as One Piece of the Puzzle: A Systematic Review of Consumer Involvement in Design of Technology-Based Youth Mental Health and Well-Being Interventions

    Science.gov (United States)

    Lawn, Sharon; Venning, Anthony; Winsall, Megan; Jones, Gabrielle M; Wyld, Kaisha; Damarell, Raechel A; Antezana, Gaston; Schrader, Geoffrey; Smith, David; Collin, Philippa; Bidargaddi, Niranjan

    2015-01-01

    Background Despite the potential of technology-based mental health interventions for young people, limited uptake and/or adherence is a significant challenge. It is thought that involving young people in the development and delivery of services designed for them leads to better engagement. Further research is required to understand the role of participatory approaches in design of technology-based mental health and well-being interventions for youth. Objective To investigate consumer involvement processes and associated outcomes from studies using participatory methods in development of technology-based mental health and well-being interventions for youth. Methods Fifteen electronic databases, using both resource-specific subject headings and text words, were searched describing 2 broad concepts-participatory research and mental health/illness. Grey literature was accessed via Google Advanced search, and relevant conference Web sites and reference lists were also searched. A first screening of titles/abstracts eliminated irrelevant citations and documents. The remaining citations were screened by a second reviewer. Full text articles were double screened. All projects employing participatory research processes in development and/or design of (ICT/digital) technology-based youth mental health and well-being interventions were included. No date restrictions were applied; English language only. Data on consumer involvement, research and design process, and outcomes were extracted via framework analysis. Results A total of 6210 studies were reviewed, 38 full articles retrieved, and 17 included in this study. It was found that consumer participation was predominantly consultative and consumerist in nature and involved design specification and intervention development, and usability/pilot testing. Sustainable participation was difficult to achieve. Projects reported clear dichotomies around designer/researcher and consumer assumptions of effective and acceptable

  7. Indigenous Storytelling and Participatory Action Research

    Science.gov (United States)

    2015-01-01

    Storytelling, in its various forms, has often been described as a practice with great emancipatory potential. In turn, Indigenous knowledge shows great promise in guiding a participatory action research (PAR) methodology. Yet these two approaches are rarely discussed in relation to one another, nor, has much been written in terms of how these two approaches may work synergistically toward a decolonizing research approach. In this article, I report on a community-driven knowledge translation activity, the Peoples’ International Health Tribunal, as an exemplar of how narrative and PAR approaches, guided by local Indigenous knowledge, have great potential to build methodologically and ethically robust research processes. Implications for building globally relevant research alliances and scholarship are further discussed, particularly in relation to working with Indigenous communities. PMID:28462305

  8. Participatory Research Revealing the Work and Occupational Health Hazards of Cooperative Recyclers in Brazil

    Directory of Open Access Journals (Sweden)

    Sonia M. N. Felipone

    2013-09-01

    Full Text Available Although informal waste collectors are sometimes organized in cooperatives, their working conditions remain extremely precarious and unsafe. The paper discusses the findings of action oriented, participatory qualitative research with several recycling groups in the metropolitan region of São Paulo, Brazil. During workshops with the recyclers mapping, acting, and drawing methods helped reveal health hazards from collection, separation and transportation of recyclable materials. Major health problems relate to chemical and biological hazards, musculoskeletal damage, mechanical trauma and poor emotional wellbeing. The recent federal legislation on solid waste management opens new avenues for the inclusion of recycling cooperatives in selective waste collection. Nevertheless, we express the need to consider the distinctive characteristics and vulnerabilities of recycling groups, when developing safer work environments in these social businesses. We also suggest that the workspace be ergonomically organized and that public awareness campaigns about selective waste collection are conducted regularly to increase the quality of source separation. The introduction of electric hand pushed carts can further reduce health strains. This research has produced a better understanding of the work of the recyclers and related health risks. The interactive qualitative research methodology has allowed for the co-creation and mobilization of specific knowledge on health and safety in recycling cooperatives.

  9. Participatory management in today's health care setting

    International Nuclear Information System (INIS)

    Burnham, B.A.

    1987-01-01

    As the health care revolution progresses, so must the management styles of today's leaders. The authors must ask ourselves if we are managing tomorrow's work force or the work force of the past. Participatory management may better meet the needs of today's work force. This paper identifies the reasons participatory management is a more effective management style, the methods used to implement a participatory management program, its benefits (such as higher productivity and more efficient, effective implementation and acceptance of change), and the difficulties experienced

  10. Consumer-Involved Participatory Research to Address General Medical Health and Wellness in a Community Mental Health Setting.

    Science.gov (United States)

    Iyer, Sharat P; Pancake, Laura S; Dandino, Elizabeth S; Wells, Kenneth B

    2015-12-01

    Barriers to sustainably implementing general medical interventions in community mental health (CMH) settings include role uncertainty, consumer engagement, workforce limitations, and sustainable reimbursement. To address these barriers, this project used a community-partnered participatory research framework to create a stakeholder-based general medical and wellness intervention in a large CMH organization, with consumers involved in all decision-making processes. Consumers faced practical barriers to participating in organizational decision making, but their narratives were critical in establishing priorities and ensuring sustainability. Addressing baseline knowledge and readiness of stakeholders and functional challenges to consumer involvement can aid stakeholder-based approaches to implementing general medical interventions in CMH settings.

  11. International health research monitoring: exploring a scientific and a cooperative approach using participatory action research

    OpenAIRE

    Chantler, Tracey; Cheah, Phaik Yeong; Miiro, George; Hantrakum, Viriya; Nanvubya, Annet; Ayuo, Elizabeth; Kivaya, Esther; Kidola, Jeremiah; Kaleebu, Pontiano; Parker, Michael; Njuguna, Patricia; Ashley, Elizabeth; Guerin, Philippe J; Lang, Trudie

    2014-01-01

    Objectives To evaluate and determine the value of monitoring models developed by the Mahidol Oxford Tropical Research Unit and the East African Consortium for Clinical Research, consider how this can be measured and explore monitors’ and investigators’ experiences of and views about the nature, purpose and practice of monitoring. Research design A case study approach was used within the context of participatory action research because one of the aims was to guide and improve practice. 34 inte...

  12. A participatory evaluation framework in the establishment and implementation of transdisciplinary collaborative centers for health disparities research.

    Science.gov (United States)

    Scarinci, Isabel C; Moore, Artisha; Benjamin, Regina; Vickers, Selwyn; Shikany, James; Fouad, Mona

    2017-02-01

    We describe the formulation and implementation of a participatory evaluation plan for three Transdisciplinary Collaborative Centers for Health Disparities Research funded by the National Institute of Minority Health and Health Disparities. Although different in scope of work, all three centers share a common goal of establishing sustainable centers in health disparities science in three priority areas - social determinants of health, men's health research, and health policy research. The logic model guides the process, impact, and outcome evaluation. Emphasis is placed on process evaluation in order to establish a "blue print" that can guide other efforts as well as assure that activities are being implemented as planned. We have learned three major lessons in this process: (1) Significant engagement, participation, and commitment of all involved is critical for the evaluation process; (2) Having a "roadmap" (logic model) and "directions" (evaluation worksheets) are instrumental in getting members from different backgrounds to follow the same path; and (3) Participation of the evaluator in the leadership and core meetings facilitates continuous feedback. Copyright © 2016 Elsevier Ltd. All rights reserved.

  13. Implementing participatory action research in Lithuania: potential and challenges

    Directory of Open Access Journals (Sweden)

    Gabija Jarašiūnaitė

    2015-12-01

    Full Text Available Participatory action research is a quite new approach to research in Lithuania. The aim of an article was to disscuss the potential and challenges of participatory action research while implementing it in Lithuanian organizations. The qualitative approach was chosen for the study using the method of Focus groups. 20 researchers from social and biomedicine sciences from six institutions of High education in Lithuania participated in the study. The results of the study showed that participatory action reasearch is seen as an approach with many possibilities because of a wide range of used methods, constant interactions with research participants and the lenght of the research process. Researchers value the possibility to access organization at the begining, during research process and evaluate the effectiveness of the changes after the process. The research challenges are associated with the competence of a researcher including his/her sensitivity during process, ability to involve active participation of organization members in the ongoing process by creating safe and trusting environment. Some specific challenges associated with Lithuanian organizations are organizations‘ tiredness of researches and lack of faith of the benefits of researches because of some previous experiences. Keywords: Participatory Action Research, Organization, Lithuania.

  14. Too much coffee... - Negotiation of Knowledge Forms in Participatory Research Settings

    DEFF Research Database (Denmark)

    Olesen, Birgitte Ravn; Nordentoft, Helle Merete

    Based on a Bakhtinian approach negotiations of knowledge in a workshop with health professionals at two psychiatric wards were analyzed. Our analysis reveals that there is a mismatch between the dialogical context we as participatory-oriented researchers want to invoke and the monological context...

  15. Using Community-Based Participatory Research and Human-Centered Design to Address Violence-Related Health Disparities Among Latino/a Youth.

    Science.gov (United States)

    Kia-Keating, Maryam; Santacrose, Diana E; Liu, Sabrina R; Adams, Jessica

    High rates of exposure to violence and other adversities among Latino/a youth contribute to health disparities. The current article addresses the ways in which community-based participatory research (CBPR) and human-centered design (HCD) can help engage communities in dialogue and action. We present a project exemplifying how community forums, with researchers, practitioners, and key stakeholders, including youths and parents, integrated HCD strategies with a CBPR approach. Given the potential for power inequities among these groups, CBPR + HCD acted as a catalyst for reciprocal dialogue and generated potential opportunity areas for health promotion and change. Future directions are described.

  16. A case study in the use of community-based participatory research in public health nursing.

    Science.gov (United States)

    Savage, Christine L; Xu, Yin; Lee, Rebecca; Rose, Barbara L; Kappesser, Mary; Anthony, Jean Spann

    2006-01-01

    There is growing demand for research using a community-based participatory (CBPR) approach. CBPR requires that the academic research team actively partner with community members and stakeholders in the entire research process. The community members are full partners with the researchers in relation to the development and implementation of the study, analysis of the data, and dissemination of the findings. The purpose of this article is to review four basic principles of CBPR and provide an example of how these CBPR principles were used in an ethnographic study related to the culture of African American infant health. In the pilot study, CBPR provided the framework for recruitment and retention of participants, ongoing data analysis, and dissemination of findings. Using CBPR provided the researchers an introduction into the selected community. Community members served as key informants about the culture of the community and provided access to potential participants. The community partners contributed to analysis of emerging themes and in the dissemination of findings to the community, stakeholders, and the scientific community. CBPR provides opportunities for community health nurse researchers to conduct research with vulnerable populations and sets the stage for implementing evidenced-based nursing interventions in the community.

  17. Indigenous Storytelling and Participatory Action Research: Allies Toward Decolonization? Reflections From the Peoples' International Health Tribunal.

    Science.gov (United States)

    Caxaj, C Susana

    2015-01-01

    Storytelling, in its various forms, has often been described as a practice with great emancipatory potential. In turn, Indigenous knowledge shows great promise in guiding a participatory action research (PAR) methodology. Yet these two approaches are rarely discussed in relation to one another, nor, has much been written in terms of how these two approaches may work synergistically toward a decolonizing research approach. In this article, I report on a community-driven knowledge translation activity, the Peoples' International Health Tribunal, as an exemplar of how narrative and PAR approaches, guided by local Indigenous knowledge, have great potential to build methodologically and ethically robust research processes. Implications for building globally relevant research alliances and scholarship are further discussed, particularly in relation to working with Indigenous communities.

  18. Acquired and Participatory Competencies in Health Professions Education: Definition and Assessment in Global Health.

    Science.gov (United States)

    Eichbaum, Quentin

    2017-04-01

    Many health professions education programs in high-income countries (HICs) have adopted a competency-based approach to learning. Although global health programs have followed this trend, defining and assessing competencies has proven problematic, particularly in resource-constrained settings of low- and middle-income countries (LMICs) where HIC students and trainees perform elective work. In part, this is due to programs failing to take sufficient account of local learning, cultural, and health contexts.A major divide between HIC and LMIC settings is that the learning contexts of HICs are predominantly individualist, whereas those of LMICs are generally collectivist. Individualist cultures view learning as something that the individual acquires independent of context and can possess; collectivist cultures view learning as arising dynamically from specific contexts through group participation.To bridge the individualist-collectivist learning divide, the author proposes that competencies be classified as either acquired or participatory. Acquired competencies can be transferred across contexts and assessed using traditional psychometric approaches; participatory competencies are linked to contexts and require alternative assessment approaches. The author proposes assessing participatory competencies through the approach of self-directed assessment seeking, which includes multiple members of the health care team as assessors.The proposed classification of competencies as acquired or participatory may apply across health professions. The author suggests advancing participatory competencies through mental models of sharing. In global health education, the author recommends developing three new competency domains rooted in participatory learning, collectivism, and sharing: resourceful learning; transprofessionalism and transformative learning; and social justice and health equity.

  19. Queering Participatory Design Research

    Science.gov (United States)

    McWilliams, Jacob

    2016-01-01

    This article offers a way forward for educators and researchers interested in drawing on the principles of "queer theory" to inform participatory design. In this article, I aim to achieve two related goals: To introduce new concepts within a critical conceptual practice of questioning and challenging the "heterosexual matrix"…

  20. Establishing the infrastructure to conduct comparative effectiveness research toward the elimination of disparities: a community-based participatory research framework.

    Science.gov (United States)

    Wilson, Danyell S; Dapic, Virna; Sultan, Dawood H; August, Euna M; Green, B Lee; Roetzheim, Richard; Rivers, Brian

    2013-11-01

    In Tampa, Florida, researchers have partnered with community- and faith-based organizations to create the Comparative Effectiveness Research for Eliminating Disparities (CERED) infrastructure. Grounded in community-based participatory research, CERED acts on multiple levels of society to enhance informed decision making (IDM) of prostate cancer screening among Black men. CERED investigators combined both comparative effectiveness research and community-based participatory research to design a trial examining the effectiveness of community health workers and a digitally enhanced patient decision aid to support IDM in community settings as compared with "usual care" for prostate cancer screening. In addition, CERED researchers synthesized evidence through the development of systematic literature reviews analyzing the effectiveness of community health workers in changing knowledge, attitudes and behaviors of African American adults toward cancer prevention and education. An additional systematic review analyzed chemoprevention agents for prostate cancer as an emerging technique. Both of these reviews, and the comparative effectiveness trial supporting the IDM process, add to CERED's goal of providing evidence to eliminate cancer health disparities.

  1. Systems Thinking Tools as Applied to Community-Based Participatory Research: A Case Study

    Science.gov (United States)

    BeLue, Rhonda; Carmack, Chakema; Myers, Kyle R.; Weinreb-Welch, Laurie; Lengerich, Eugene J.

    2012-01-01

    Community-based participatory research (CBPR) is being used increasingly to address health disparities and complex health issues. The authors propose that CBPR can benefit from a systems science framework to represent the complex and dynamic characteristics of a community and identify intervention points and potential "tipping points."…

  2. Participatory methods for Inuit public health promotion and programme evaluation in Nunatsiavut, Canada.

    Science.gov (United States)

    Saini, Manpreet

    2017-01-01

    Engaging stakeholders is crucial for health promotion and programme evaluations; understanding how to best engage stakeholders is less clear, especially within Indigenous communities. The objectives of this thesis research were to use participatory methods to: (1) co-develop and evaluate a whiteboard video for use as a public health promotion tool in Rigolet, Nunatsiavut, and (2) develop and validate a framework for participatory evaluation of Inuit public health initiatives in Nunatsiavut, Labrador. Data collection tools included interactive workshops, community events, interviews, focus-group discussions and surveys. Results indicated the whiteboard video was an engaging and suitable medium for sharing public health messaging due to its contextually relevant elements. Participants identified 4 foundational evaluation framework components necessary to conduct appropriate evaluations, including: (1) community engagement, (2) collaborative evaluation development, (3) tailored evaluation data collection and (4) evaluation scope. This research illustrates stakeholder participation is critical to develop and evaluate contextually relevant public health initiatives in Nunatsiavut, Labrador and should be considered in other Indigenous communities.

  3. Questions That Won't Go Away in Participatory Research

    Science.gov (United States)

    Jonathan W. Long; Heidi L. Ballard; Larry A. Fisher; Jill M. Belsky

    2016-01-01

    Ethical issues are intrinsic to conducting research regarding society and natural resources, but they often become poignant when engaging in Participatory Action Research. We compiled common and persistent challenges into a list of "Questions That Won't Go Away" or "QTWGAs" that are relevant to people interested in conducting participatory...

  4. The Peru cervical cancer prevention study (PERCAPS): community-based participatory research in Manchay, Peru.

    Science.gov (United States)

    Levinson, Kimberly L; Abuelo, Carolina; Chyung, Eunice; Salmeron, Jorge; Belinson, Suzanne E; Sologuren, Carlos Vallejos; Ortiz, Carlos Santos; Vallejos, Maria Jose; Belinson, Jerome L

    2013-01-01

    Cervical cancer is a preventable disease which causes significant morbidity and mortality, particularly in developing countries. Although technology for early detection continues to improve, prevention programs suffer from significant barriers. Community-based participatory research is an approach to research which focuses on collaboration with the community to surmount these barriers. The objective of this study was to evaluate the utility of community-based participatory research techniques in a mother-child screen/treat and vaccinate program for cervical cancer prevention in Manchay, Peru. Human papillomavirus (HPV) self-sampling and cryotherapy were used for the screen/treat intervention, and the Gardasil vaccine was used for the vaccine intervention. Community health workers from Manchay participated in a 3-day educational course, designed by the research team. The community health workers then decided how to implement the interventions in their community. The success of the program was measured by (1) the ability of the community health workers to determine an implementation plan, (2) the successful use of research forms provided, (3) participation and retention rates, and (4) satisfaction of the participants. (1) The community health workers used a door-to-door approach through which participants were successfully registered and both interventions were successfully carried out; (2) registration forms, consent forms, and result forms were used correctly with minimal error; (3) screen/treat intervention: 97% of registered participants gave an HPV sample, 94% of HPV-positive women were treated, and 90% returned for 6-month follow-up; vaccine intervention: 95% of registered girls received the first vaccine, 97% of those received the second vaccine, and 93% the third; (4) 96% of participants in the screen/treat intervention reported high satisfaction. Community-based participatory research techniques successfully helped to implement a screen/treat and vaccinate

  5. Harvard Personal Genome Project: lessons from participatory public research

    Science.gov (United States)

    2014-01-01

    Background Since its initiation in 2005, the Harvard Personal Genome Project has enrolled thousands of volunteers interested in publicly sharing their genome, health and trait data. Because these data are highly identifiable, we use an ‘open consent’ framework that purposefully excludes promises about privacy and requires participants to demonstrate comprehension prior to enrollment. Discussion Our model of non-anonymous, public genomes has led us to a highly participatory model of researcher-participant communication and interaction. The participants, who are highly committed volunteers, self-pursue and donate research-relevant datasets, and are actively engaged in conversations with both our staff and other Personal Genome Project participants. We have quantitatively assessed these communications and donations, and report our experiences with returning research-grade whole genome data to participants. We also observe some of the community growth and discussion that has occurred related to our project. Summary We find that public non-anonymous data is valuable and leads to a participatory research model, which we encourage others to consider. The implementation of this model is greatly facilitated by web-based tools and methods and participant education. Project results are long-term proactive participant involvement and the growth of a community that benefits both researchers and participants. PMID:24713084

  6. Harvard Personal Genome Project: lessons from participatory public research.

    Science.gov (United States)

    Ball, Madeleine P; Bobe, Jason R; Chou, Michael F; Clegg, Tom; Estep, Preston W; Lunshof, Jeantine E; Vandewege, Ward; Zaranek, Alexander; Church, George M

    2014-02-28

    Since its initiation in 2005, the Harvard Personal Genome Project has enrolled thousands of volunteers interested in publicly sharing their genome, health and trait data. Because these data are highly identifiable, we use an 'open consent' framework that purposefully excludes promises about privacy and requires participants to demonstrate comprehension prior to enrollment. Our model of non-anonymous, public genomes has led us to a highly participatory model of researcher-participant communication and interaction. The participants, who are highly committed volunteers, self-pursue and donate research-relevant datasets, and are actively engaged in conversations with both our staff and other Personal Genome Project participants. We have quantitatively assessed these communications and donations, and report our experiences with returning research-grade whole genome data to participants. We also observe some of the community growth and discussion that has occurred related to our project. We find that public non-anonymous data is valuable and leads to a participatory research model, which we encourage others to consider. The implementation of this model is greatly facilitated by web-based tools and methods and participant education. Project results are long-term proactive participant involvement and the growth of a community that benefits both researchers and participants.

  7. Engaging Adolescents through Participatory and Qualitative Research Methods to Develop a Digital Communication Intervention to Reduce Adolescent Obesity

    Science.gov (United States)

    Livingood, William C.; Monticalvo, David; Bernhardt, Jay M.; Wells, Kelli T.; Harris, Todd; Kee, Kadra; Hayes, Johnathan; George, Donald; Woodhouse, Lynn D.

    2017-01-01

    Background: The complexity of the childhood obesity epidemic requires the application of community-based participatory research (CBPR) in a manner that can transcend multiple communities of stakeholders, including youth, the broader community, and the community of health care providers. Aim: To (a) describe participatory processes for engaging…

  8. Utilizing community-based participatory research to adapt a mental health intervention for African American emerging adults.

    Science.gov (United States)

    Mance, Gishawn A; Mendelson, Tamar; Byrd, Benjamin; Jones, Jahon; Tandon, Darius

    2010-01-01

    Adapting mental health interventions to heighten their cultural and contextual appropriateness may be critical for engaging ethnic/racial groups that have been traditionally excluded or marginalized. Community-based participatory research (CBPR) is a collaborative research approach that highlights unique strengths and expertise of those involved. Although intervention adaptations have garnered much attention there is little previous work specifically describing the adaptation process of mental health interventions using CBPR. This article summarizes the use of a CBPR approach to adapt a mental health intervention for urban adolescents and young adults disconnected from school and work, a population at elevated risk for poor mental health owing to the presence of numerous chronic stressors. We describe the process undertaken to modify the content and delivery format of an evidence-based intervention. Unique challenges of working with urban African American adolescents and young adults in a job training program are highlighted. By incorporating principles of co-learning and shared responsibility, this partnership was able to achieve positive outcomes. Our experience suggests that a CBPR approach can be used effectively to adapt a mental health intervention in collaboration with African American adolescents and emerging adults in a job training program.

  9. Understanding Participatory Action Research: A Qualitative Research Methodology Option

    Science.gov (United States)

    MacDonald, Cathy

    2012-01-01

    Participatory Action Research (PAR) is a qualitative research methodology option that requires further understanding and consideration. PAR is considered democratic, equitable, liberating, and life-enhancing qualitative inquiry that remains distinct from other qualitative methodologies (Kach & Kralik, 2006). Using PAR, qualitative features of an…

  10. Integrating community-based participatory research and informatics approaches to improve the engagement and health of underserved populations.

    Science.gov (United States)

    Unertl, Kim M; Schaefbauer, Chris L; Campbell, Terrance R; Senteio, Charles; Siek, Katie A; Bakken, Suzanne; Veinot, Tiffany C

    2016-01-01

    We compare 5 health informatics research projects that applied community-based participatory research (CBPR) approaches with the goal of extending existing CBPR principles to address issues specific to health informatics research. We conducted a cross-case analysis of 5 diverse case studies with 1 common element: integration of CBPR approaches into health informatics research. After reviewing publications and other case-related materials, all coauthors engaged in collaborative discussions focused on CBPR. Researchers mapped each case to an existing CBPR framework, examined each case individually for success factors and barriers, and identified common patterns across cases. Benefits of applying CBPR approaches to health informatics research across the cases included the following: developing more relevant research with wider impact, greater engagement with diverse populations, improved internal validity, more rapid translation of research into action, and the development of people. Challenges of applying CBPR to health informatics research included requirements to develop strong, sustainable academic-community partnerships and mismatches related to cultural and temporal factors. Several technology-related challenges, including needs to define ownership of technology outputs and to build technical capacity with community partners, also emerged from our analysis. Finally, we created several principles that extended an existing CBPR framework to specifically address health informatics research requirements. Our cross-case analysis yielded valuable insights regarding CBPR implementation in health informatics research and identified valuable lessons useful for future CBPR-based research. The benefits of applying CBPR approaches can be significant, particularly in engaging populations that are typically underserved by health care and in designing patient-facing technology. © The Authors 2015. Published by Oxford University Press on behalf of the American Medical

  11. Reflections from a Creative Community-Based Participatory Research Project Exploring Health and Body Image with First Nations Girls

    Directory of Open Access Journals (Sweden)

    Jennifer M. Shea PhD

    2013-02-01

    Full Text Available In Canada, Aboriginal peoples often experience a multitude of inequalities when compared with the general population, particularly in relation to health (e.g., increased incidence of diabetes. These inequalities are rooted in a negative history of colonization. Decolonizing methodologies recognize these realities and aim to shift the focus from communities being researched to being collaborative partners in the research process. This article describes a qualitative community-based participatory research project focused on health and body image with First Nations girls in a Tribal Council region in Western Canada. We discuss our project design and the incorporation of creative methods (e.g., photovoice to foster integration and collaboration as related to decolonizing methodology principles. This article is both descriptive and reflective as it summarizes our project and discusses lessons learned from the process, integrating evaluations from the participating girls as well as our reflections as researchers.

  12. Nursing and health sciences workforce diversity research using PhotoVoice: a college and high school student participatory project.

    Science.gov (United States)

    Benavides-Vaello, Sandra; Katz, Janet R; Peterson, Jeffery Chaichana; Allen, Carol B; Paul, Robbie; Charette-Bluff, Andrea Lelana; Morris, Phyllis

    2014-04-01

    This participatory study used PhotoVoice and qualitative description to (a) mentor baccalaureate nursing and college students in workforce diversity research; (b) explore barriers and facilitators encountered by rural American Indian, Hispanic, and other high school students when attending college and pursuing careers in nursing or the health sciences; and (c) model a process of social action to help existing and future students. Baccalaureate nursing and graduate students participated in all stages of research, including dissemination. Five themes emerged from analysis of PhotoVoice data: (a) being afraid; (b) believing; (c) taking small steps; (d) facing fears; and (e) using support systems. Findings underscore the importance of helping students participate in efforts to increase work-force diversity through research. Increasing nursing and health sciences workforce diversity may require strategies developed within and tailored to specific cultures and communities. Copyright 2014, SLACK Incorporated.

  13. Participatory Research and Development for Sustainable Agriculture ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    Participatory research and development (PR&D) offers such an inclusive model. ... PR&D concepts and practices for practitioners, researchers, and academic. ... Call for new OWSD Fellowships for Early Career Women Scientists now open.

  14. Using participatory action research to develop an HIV and Aids ...

    African Journals Online (AJOL)

    Using participatory action research to develop an HIV and Aids school plan. ... South African Journal of Education ... In this article we report on the manner in which participatory action research (PAR) was utilised by teachers in developing a Human Immunodeficiency Virus (HIV) and Acquired Immunodeficiency Syndrome ...

  15. Participatory Model of Mental Health Programming: Lessons Learned from Work in a Developing Country.

    Science.gov (United States)

    Nastasi, Bonnie K.; Varjas, Kristen; Sarkar, Sreeroopa; Jayasena, Asoka

    1998-01-01

    Describes application of participatory model for creating school-based mental health services in a developing country. Describes process of identifying individual and cultural factors relevant to mental health. Discusses importance of formative research and collaboration with stakeholders to ensure cultural specificity of interventions, and the…

  16. Participatory Bioethics Research and its Social Impact: The Case of Coercion Reduction in Psychiatry.

    Science.gov (United States)

    Abma, Tineke A; Voskes, Yolande; Widdershoven, Guy

    2017-02-01

    In this article we address the social value of bioethics research and show how a participatory approach can achieve social impact for a wide audience of stakeholders, involving them in a process of joint moral learning. Participatory bioethics recognizes that research co-produced with stakeholders is more likely to have impact on healthcare practice. These approaches aim to engage multiple stakeholders and interested partners throughout the whole research process, including the framing of ideas and research questions, so that outcomes are tailored to the interests and context, and the type of impact stakeholders envisage. There is an emphasis on realizing social change through the conduct (not merely the results) of the research, and it is believed that the engagement of stakeholders in the research process will promote their intrinsic motivation to change their practice. Another distinctive feature of participatory bioethics research is that its central normative commitment is to reflection and dialogue, not to a particular substantive ethical approach. In reflection and dialogue there is an emphasis on inclusion and the co-production of knowledge. Furthermore, empirical and normative research are combined, and there is a deliberate attempt to give voice to otherwise marginalized positions. This provides a model of social impact which is relevant not only for bioethics research, but also for other areas of health care research. We will show the merits of a participatory approach to bioethics research with a case example. It concerns the reduction of coercion and in particular seclusion in Dutch mental healthcare. © 2017 John Wiley & Sons Ltd.

  17. Through a Feminist Poststructuralist Lens: Embodied Subjectivites and Participatory Action Research

    Science.gov (United States)

    Chesnay, Catherine T.

    2016-01-01

    An emerging literature has been building bridges between poststructuralism and participatory action research, highlighting the latter's potential for transformative action. Using examples from participative action research projects with incarcerated or previously incarcerated women, this article discusses how participatory action research is a…

  18. The Maine Garlic Project: A Participatory Research and Education Program

    Science.gov (United States)

    Fuller, David; Johnson, Steven B.

    2013-01-01

    Participatory research is a useful technique for collecting basic data over a large geographic area. Garlic production was chosen as a participatory research study focus in Maine. Project participants (285) received bulbs to plant, monitored their crop, and reported data online. Participants received a monthly educational newsletter to improve…

  19. Homelessness as viewed by incarcerated women: participatory research.

    Science.gov (United States)

    Martin, Ruth Elwood; Hanson, Debra; Hemingway, Christine; Ramsden, Vivian; Buxton, Jane; Granger-Brown, Alison; Condello, Lara-Lisa; Macaulay, Ann; Janssen, Patti; Hislop, T Gregory

    2012-01-01

    The purpose of this paper is to describe the development, by incarcerated women who were members of a prison participatory health research team, of a survey tool regarding homelessness and housing, the survey findings and recommendations for policy. A survey was developed by incarcerated women in a minimum/medium security women's prison in Canada. Associations were examined between socio-demographic factors and reports of difficulty finding housing upon release, homelessness contributing to a return to crime, and a desire for relocation to another city upon release. Open-ended questions were examined to look for recurrent themes and to illuminate the survey findings. In total, 83 women completed the survey, a 72 per cent response rate. Of the 71 who were previously incarcerated, 56 per cent stated that homelessness contributed to their return to crime. Finding housing upon release was a problem for 63 per cent and 34 per cent desired relocation to another city upon release. Women indicated that a successful housing plan should incorporate flexible progressive staged housing. The present study focuses only on incarcerated women but could be expanded in future to include men. Incarcerated women used the findings to create a housing proposal for prison leavers and created a resource database of the limited housing resources for women prison leavers. Lack of suitable housing is a major factor leading to recidivism. This study highlights the reality of the cycle of homelessness, poverty, crime for survival, street-life leading to drug use and barriers to health, education and employment that incarcerated women face. Housing is a recognized basic determinant of health. No previous studies have used participatory research to address homelessness in a prison population.

  20. Leveraging health information exchange to improve population health reporting processes: lessons in using a collaborative-participatory design process.

    Science.gov (United States)

    Revere, Debra; Dixon, Brian E; Hills, Rebecca; Williams, Jennifer L; Grannis, Shaun J

    2014-01-01

    Surveillance, or the systematic monitoring of disease within a population, is a cornerstone function of public health. Despite significant investment in information technologies (IT) to improve the public's health, health care providers continue to rely on manual, spontaneous reporting processes that can result in incomplete and delayed surveillance activities. Participatory design principles advocate including real users and stakeholders when designing an information system to ensure high ecological validity of the product, incorporate relevance and context into the design, reduce misconceptions designers can make due to insufficient domain expertise, and ultimately reduce barriers to adoption of the system. This paper focuses on the collaborative and informal participatory design process used to develop enhanced, IT-enabled reporting processes that leverage available electronic health records in a health information exchange to prepopulate notifiable-conditions report forms used by public health authorities. Over nine months, public health stakeholders, technical staff, and informatics researchers were engaged in a multiphase participatory design process that included public health stakeholder focus groups, investigator-engineering team meetings, public health survey and census regarding high-priority data elements, and codesign of exploratory prototypes and final form mock-ups. A number of state-mandated report fields that are not highly used or desirable for disease investigation were eliminated, which allowed engineers to repurpose form space for desired and high-priority data elements and improve the usability of the forms. Our participatory design process ensured that IT development was driven by end user expertise and needs, resulting in significant improvements to the layout and functionality of the reporting forms. In addition to informing report form development, engaging with public health end users and stakeholders through the participatory design

  1. Participatory action research advances climate change adaptation ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    2012-05-01

    May 1, 2012 ... The Application of Participatory Action Research to Climate Change Adaptation in ... Soil fertility management · A series of country case studies ... to 2012 as a joint initiative of Canada's International Development Research ...

  2. From recovery-oriented care to public health: Case studies of participatory public art as a pathway to wellness for persons with behavioral health challenges.

    Science.gov (United States)

    Mohatt, Nathaniel Vincent; Hunter, Bronwyn A; Matlin, Samantha L; Golden, Jane; Evans, Arthur C; Tebes, Jacob Kraemer

    2015-06-01

    The objective of this study is to identify individual mechanisms of change that result from engaging in an innovative participatory public art project for persons with significant behavioral health challenges. We present two case studies that examine how participatory public art promotes recovery and wellness. This research is part of a larger, multilevel comparative outcome trial on the impact of participatory public art on the health and well-being of adults in recovery from mental illness and addiction and on the distressed city neighborhoods in which they live. The case studies describe the unique ways in which participatory public art contributed to key recovery domains of growth in friendship, self-discovery, giving back, and hope. The two cases indicate that the development of a strengths-based sense of self through art was accompanied by a growth in personal social responsibility. The two cases also indicate that participatory public art may have a profound impact on the internalization of stigma. The findings support the value of participatory public art as a strategy for blending recovery and public health perspectives to promote both individual and community wellness.

  3. Participatory public health systems research: value of community involvement in a study series in mental health emergency preparedness.

    Science.gov (United States)

    McCabe, O Lee; Marum, Felicity; Semon, Natalie; Mosley, Adrian; Gwon, Howard; Perry, Charlene; Moore, Suzanne Straub; Links, Jonathan M

    2012-01-01

    translational impact of study findings. Systems-based partnerships among academic, faith, and government entities offer an especially promising infrastructure for conducting participatory public health systems research in domestic emergency preparedness and response.

  4. Court-based participatory research: collaborating with the justice system to enhance sexual health services for vulnerable women in the United States.

    Science.gov (United States)

    Roth, Alexis; Fortenberry, J Dennis; Van Der Pol, Barbara; Rosenberger, Joshua; Dodge, Brian; Arno, Janet; Waters, Janine; Certo, David; Reece, Michael

    2012-11-01

    Although jail screening programs have an important role in the diagnosis and treatment of sexually transmissible infections (STI) and HIV among incarcerated individuals, many arrestees are not screened before release. Justice-involved women are at particularly high risk for these conditions because of individual risk behaviour as well as other network-level risk factors. Court-based programs could provide a critical bridge between these women, STI risk counselling and health services. This formative study explored the features of a program that would encourage STI testing among court-involved women. Further, we describe how community-based participatory research principles were adapted for use in a court setting and the resulting justice-public health partnership. Using semistructured interviews and focus group discussions, we explored issues related to health-seeking behaviours, perceived gaps in services for high-risk women and the components of a court-based screening program. Six focus groups were conducted with women with a history of commercial sex work and staff from the court, as well as local organisations providing HIV and social support services for high-risk women. Community-based participatory research (CBPR) principles facilitated development of relevant research questions and equitable processes, and assisted partners to consider individual and sociostructural sources of health disparities. Although not every principle was applicable in a court setting, the CBPR framework was helpful for building cohesion and support for the project. We provide a description of how CBPR principles were operationalised, describe the key lessons learned and discuss the implications for CBPR projects in a community court.

  5. Participatory health impact assessment for the development of local government regulation on hazard control

    International Nuclear Information System (INIS)

    Inmuong, Uraiwan; Rithmak, Panee; Srisookwatana, Soomol; Traithin, Nathathai; Maisuporn, Pornpun

    2011-01-01

    The Thai Public Health Act 1992 required the Thai local governments to issue respective regulations to take control of any possible health-hazard related activities, both from commercial and noncommercial sources. Since 1999, there has been centrally decentralized of power to a new form of local government establishment, namely Sub-district Administrative Organization (SAO). The SAO is asmall-scale local governing structure while its legitimate function is for community services, including control of health impact related activities. Most elected SAO administrators and officers are new and less experience with any of public health code of practice, particularly on health-hazard control. This action research attempted to introduce and apply a participatory health impact assessment (HIA) tool for the development of SAO health-hazard control regulation. The study sites were at Ban Meang and Kok See SAOs, Khon Kaen Province, Thailand, while all intervention activities conducted during May 2005-April 2006. A set of cooperative activities between researchers and community representatives were planned and organized by; surveying and identifying place and service base locally causing local environmental health problems, organizing community participatory workshops for drafting and proposing the health-hazard control regulation, and appropriate practices for health-hazard controlling measures. This action research eventually could successfully enable the SAO administrators and officers understanding of local environmental-related health problem, as well as development of imposed health-hazard control regulation for local community.

  6. A situated practice of ethics for participatory visual and digital methods in public health research and practice: a focus on digital storytelling.

    Science.gov (United States)

    Gubrium, Aline C; Hill, Amy L; Flicker, Sarah

    2014-09-01

    This article explores ethical considerations related to participatory visual and digital methods for public health research and practice, through the lens of an approach known as "digital storytelling." We begin by briefly describing the digital storytelling process and its applications to public health research and practice. Next, we explore 6 common challenges: fuzzy boundaries, recruitment and consent to participate, power of shaping, representation and harm, confidentiality, and release of materials. We discuss their complexities and offer some considerations for ethical practice. We hope this article serves as a catalyst for expanded dialogue about the need for high standards of integrity and a situated practice of ethics wherein researchers and practitioners reflexively consider ethical decision-making as part of the ongoing work of public health.

  7. Evaluation of Community Health Education Workshops among Chinese Older Adults in Chicago: A Community-Based Participatory Research Approach

    Science.gov (United States)

    Dong, Xinqi; Li, Yawen; Chen, Ruijia; Chang, E-Shien; Simon, Melissa

    2013-01-01

    Background: Health education is one of the proven ways to improve knowledge and change health attitudes and behaviors. This study is intended to assess the effectiveness of five health workshops in a Chinese community, focusing on depression, elder abuse, nutrition, breast cancer and stroke. Methods: A community-based participatory research…

  8. International health research monitoring: exploring a scientific and a cooperative approach using participatory action research.

    Science.gov (United States)

    Chantler, Tracey; Cheah, Phaik Yeong; Miiro, George; Hantrakum, Viriya; Nanvubya, Annet; Ayuo, Elizabeth; Kivaya, Esther; Kidola, Jeremiah; Kaleebu, Pontiano; Parker, Michael; Njuguna, Patricia; Ashley, Elizabeth; Guerin, Philippe J; Lang, Trudie

    2014-02-17

    To evaluate and determine the value of monitoring models developed by the Mahidol Oxford Tropical Research Unit and the East African Consortium for Clinical Research, consider how this can be measured and explore monitors' and investigators' experiences of and views about the nature, purpose and practice of monitoring. A case study approach was used within the context of participatory action research because one of the aims was to guide and improve practice. 34 interviews, five focus groups and observations of monitoring practice were conducted. Fieldwork occurred in the places where the monitoring models are coordinated and applied in Thailand, Cambodia, Uganda and Kenya. Participants included those coordinating the monitoring schemes, monitors, senior investigators and research staff. Transcribed textual data from field notes, interviews and focus groups was imported into a qualitative data software program (NVIVO V. 10) and analysed inductively and thematically by a qualitative researcher. The initial coding framework was reviewed internally and two main categories emerged from the subsequent interrogation of the data. The categories that were identified related to the conceptual framing and nature of monitoring, and the practice of monitoring, including relational factors. Particular emphasis was given to the value of a scientific and cooperative style of monitoring as a means of enhancing data quality, trust and transparency. In terms of practice the primary purpose of monitoring was defined as improving the conduct of health research and increasing the capacity of researchers and trial sites. The models studied utilise internal and network wide expertise to improve the ethics and quality of clinical research. They demonstrate how monitoring can be a scientific and constructive exercise rather than a threatening process. The value of cooperative relations needs to be given more emphasis in monitoring activities, which seek to ensure that research protects

  9. Third generation participatory design in health informatics--making user participation applicable to large-scale information system projects.

    Science.gov (United States)

    Pilemalm, Sofie; Timpka, Toomas

    2008-04-01

    Participatory Design (PD) methods in the field of health informatics have mainly been applied to the development of small-scale systems with homogeneous user groups in local settings. Meanwhile, health service organizations are becoming increasingly large and complex in character, making it necessary to extend the scope of the systems that are used for managing data, information and knowledge. This study reports participatory action research on the development of a PD framework for large-scale system design. The research was conducted in a public health informatics project aimed at developing a system for 175,000 users. A renewed PD framework was developed in response to six major limitations experienced to be associated with the existing methods. The resulting framework preserves the theoretical grounding, but extends the toolbox to suit applications in networked health service organizations. Future research should involve evaluations of the framework in other health service settings where comprehensive HISs are developed.

  10. Talking About The Smokes: a large-scale, community-based participatory research project.

    Science.gov (United States)

    Couzos, Sophia; Nicholson, Anna K; Hunt, Jennifer M; Davey, Maureen E; May, Josephine K; Bennet, Pele T; Westphal, Darren W; Thomas, David P

    2015-06-01

    To describe the Talking About The Smokes (TATS) project according to the World Health Organization guiding principles for conducting community-based participatory research (PR) involving indigenous peoples, to assist others planning large-scale PR projects. The TATS project was initiated in Australia in 2010 as part of the International Tobacco Control Policy Evaluation Project, and surveyed a representative sample of 2522 Aboriginal and Torres Strait Islander adults to assess the impact of tobacco control policies. The PR process of the TATS project, which aimed to build partnerships to create equitable conditions for knowledge production, was mapped and summarised onto a framework adapted from the WHO principles. Processes describing consultation and approval, partnerships and research agreements, communication, funding, ethics and consent, data and benefits of the research. The TATS project involved baseline and follow-up surveys conducted in 34 Aboriginal community-controlled health services and one Torres Strait community. Consistent with the WHO PR principles, the TATS project built on community priorities and strengths through strategic partnerships from project inception, and demonstrated the value of research agreements and trusting relationships to foster shared decision making, capacity building and a commitment to Indigenous data ownership. Community-based PR methodology, by definition, needs adaptation to local settings and priorities. The TATS project demonstrates that large-scale research can be participatory, with strong Indigenous community engagement and benefits.

  11. Assessing the Influence of Researcher-Partner Involvement on the Process and Outcomes of Participatory Research in Autism Spectrum Disorder and Neurodevelopmental Disorders: A Scoping Review

    Science.gov (United States)

    Jivraj, Jamil; Sacrey, Lori-Ann; Newton, Amanda; Nicholas, David; Zwaigenbaum, Lonnie

    2014-01-01

    Participatory research aims to increase the relevance and broaden the implementation of health research by involving those affected by the outcomes of health studies. Few studies within the field of neurodevelopmental disorders, particularly autism spectrum disorders, have involved autistic individuals as partners. This study sought to identify…

  12. La Investigacion Participativa en America Latina: Retablo de Papel, 10 (Participatory Research in Latin America: Series, 10).

    Science.gov (United States)

    Vejarano, Gilberto M., Comp.

    The following papers (titles are translated into English) were presented at a conference on participatory research: "Participatory Research, Popular Knowledge, and Power"; "Participatory Research and Adult Literacy"; "Developments and Perspectives on Participatory Research"; "Popular Education and Participatory…

  13. Sustaining Community-University Partnerships: Lessons learned from a participatory research project with elderly Chinese

    Directory of Open Access Journals (Sweden)

    XinQi Dong

    2011-11-01

    Full Text Available The strength of community-engaged research has been well documented in public health literature. It is recognised as a useful approach for eliminating health disparities by linking research and practice. While the framework of community-engaged research encompasses a broad range of research collaborations, community-based participatory research (CBPR places most emphasis on involving the community as a full, equitable partner throughout the collaboration. Despite growing interest in and demand for community-university partnerships, less attention is given to the issue of partnership sustainability. The purpose of this article is to present the challenges faced in sustaining a community-university partnership when conducting a CBPR project with an elderly Chinese population in Chicago’s Chinatown. Lessons and strategies learned from the cultural and linguistic complexities of the Chinese community are also detailed. In addition, based on a well-accepted sustainability conceptual framework, we reflect on the initial stage, mid-term actions and long-term goals of developing partnership sustainability. Working with the Chinese community required trust and respect for its unique cultural values and diversity. The cultural, social and environmental contexts within which the partnership operated served as critical forces for long-term sustainability: a culturally sensitive approach is instrumental in sustaining community-university partnership. Also discussed are the significant implications for evidence-based, impact-driven partnerships to develop culturally appropriate strategies to meet the needs of diverse populations. Keywords Community-based participatory research, community health partnerships, health promotion, Chinese Americans, ageing

  14. Using participatory action research for injury prevention in child development centers, Suratthani province

    Directory of Open Access Journals (Sweden)

    Naturthai Suwantip

    2018-01-01

    Full Text Available This study investigated the effects of using participatory action research (PAR in the prevention of injury to children in 14 child development centers (CDCs under local administrative organizations in one district in Suratthani province, Thailand. In total, 98 stakeholder representatives participated in the study, consisting of 7 managers or representatives of the CDCs, 14 caregivers, 7 local health officials and 70 children's parents. They participated in all stages of the study—problem identification, setting the objectives and goals of the study, planning the study, development of research tools, data collection, risk analysis, risk management, monitoring, evaluation, and revision. The physical environments that were in non-compliance with safety standards were identified after a walk-through survey with the participants using an approved checklist. The number of injuries to children was collected before and after the risk management. The participants' knowledge and awareness of child injury prevention were collected using questionnaires. Optimal solutions for injury prevention were obtained through several focus group discussions between the participants within each CDC and among the CDCs. Active participation of the stakeholders resulted in significantly more knowledge and awareness relating to child injury prevention. The environments of CDCs in compliance with safety standards were significantly increased. The number of injuries to the children decreased. The participatory action model in this research was developed through collaboration between the 14 CDCs. The executives of local administrative organizations and local health officials can take the model used in this study and apply it to injury prevention in other CDCs which have a similar environment across the province. Keywords: child development center, injury prevention, participatory action research

  15. Participatory research towards co-management: lessons from artisanal fisheries in coastal Uruguay.

    Science.gov (United States)

    Trimble, Micaela; Berkes, Fikret

    2013-10-15

    Participatory research has become increasingly common in natural resources management. Even though participatory research is considered a strategy to facilitate co-management, there is little empirical evidence supporting this. The objective of the present paper is to analyze the contributions of participatory research to help encourage the emergence of co-management, based on a case study in Piriápolis artisanal fishery in coastal Uruguay (where management has been top-down). We argue that participatory research involving artisanal fishers, government, and other stakeholders (university scientists and NGOs) can be a key stimulus towards co-management. We build this argument by considering "seven faces" by which co-management can be analyzed: (1) as power sharing; (2) as institution building; (3) as trust building; (4) as process; (5) as learning and knowledge co-production; (6) as problem solving; and (7) as governance. Our findings show that participatory research had an impact on these various faces: (1) power was shared when making research decisions; (2) a multi-stakeholder group (POPA), with a common vision and goals, was created; (3) trust among participants increased; (4) the process of group formation was valued by participants; (5) stakeholders learned skills for participation; (6) two problem-solving exercises were conducted; and (7) a diversity of stakeholders of the initial problem identified by fishers (sea lions' impact on long-line fishery) participated in the process. The case shows that participatory research functions as a platform which enhances learning and knowledge co-production among stakeholders, paving the way towards future co-management. Copyright © 2013 Elsevier Ltd. All rights reserved.

  16. Variation in the Interpretation of Scientific Integrity in Community-based Participatory Health Research

    Science.gov (United States)

    Kraemer Diaz, Anne E.; Spears Johnson, Chaya R.; Arcury, Thomas A.

    2013-01-01

    Community-based participatory research (CBPR) has become essential in health disparities and environmental justice research; however, the scientific integrity of CBPR projects has become a concern. Some concerns, such as appropriate research training, lack of access to resources and finances, have been discussed as possibly limiting the scientific integrity of a project. Prior to understanding what threatens scientific integrity in CBPR, it is vital to understand what scientific integrity means for the professional and community investigators who are involved in CBPR. This analysis explores the interpretation of scientific integrity in CBPR among 74 professional and community research team members from of 25 CBPR projects in nine states in the southeastern United States in 2012. It describes the basic definition for scientific integrity and then explores variations in the interpretation of scientific integrity in CBPR. Variations in the interpretations were associated with team member identity as professional or community investigators. Professional investigators understood scientific integrity in CBPR as either conceptually or logistically flexible, as challenging to balance with community needs, or no different than traditional scientific integrity. Community investigators interpret other factors as important in scientific integrity, such as trust, accountability, and overall benefit to the community. This research demonstrates that the variations in the interpretation of scientific integrity in CBPR call for a new definition of scientific integrity in CBPR that takes into account the understanding and needs of all investigators. PMID:24161098

  17. Conducting a randomized trial in rural and urban safety-net health centers: Added value of community-based participatory research

    Directory of Open Access Journals (Sweden)

    Meera Muthukrishnan

    2018-06-01

    Full Text Available Background: Colorectal cancer (CRC is the second most common cancer in the US. Despite evidence that screening reduces CRC incidence and mortality, screening rates are sub-optimal with disparities by race/ethnicity, income, and geography. Rural-urban differences in CRC screening are understudied even though approximately one-fifth of the US population lives in rural areas. This focus on urban populations limits the generalizability and dissemination potential of screening interventions. Methods: Using community-based participatory research (CBPR principles, we designed a cluster-randomized trial, adaptable to a range of settings, including rural and urban health centers. We enrolled 483 participants across 11 health centers representing 2 separate networks. Both networks serve medically-underserved communities; however one is primarily rural and one primarily urban. Results: Our goal in this analysis is to describe baseline characteristics of participants and examine setting-level differences. CBPR was a critical for recruiting networks to the trial. Patient respondents were predominately female (61.3%, African-American (66.5%, and earned <$1200 per month (87.1%. The rural network sample was older; more likely to be female, white, disabled or retired, and have a higher income, but fewer years of education. Conclusions: Variation in the samples partly reflects the CBPR process and partly reflects inherent differences in the communities. This confirmed the importance of using CBPR when planning for eventual dissemination, as it enhanced our ability to work within diverse settings. These baseline findings indicate that using a uniform approach to implementing a trial or intervention across diverse settings might not be effective or efficient. Keywords: Colorectal cancer screening, Community-based participatory research, Health disparities, Medically underserved populations, Dissemination and implementation, Randomized trial

  18. A novel recruiting and surveying method: Participatory research during a Pacific Islander community’s traditional cultural event

    Directory of Open Access Journals (Sweden)

    Grace Donoho

    2015-09-01

    Full Text Available Little is known about the health status of Marshallese, a Pacific Islander subpopulation living in the United States. The Marshallese have established a growing community in Northwest Arkansas, providing a unique opportunity for increasing knowledge regarding the health of this minority group. This article describes how a community-based participatory research process was used by a community and university coalition to identify and refine questionnaires and recruit study participants. Questionnaires were self-administered on computers during a one-week traditional cultural event. A total of 874 Marshallese from Arkansas completed the questionnaire, exceeding the goal of 600 respondents. Lessons learned, including the level and timing of involvement of both the leadership and the community at large, are discussed in detail. This approach enhanced communication and collaboration between the Marshallese community, service providers and researchers, resulting in higher participation and interest among the Marshallese community. Keywords: participatory research, minority populations, community health assessment, community coalition, Marshallese

  19. Engaging with and Moving on from Participatory Research: A Personal Reflection

    Science.gov (United States)

    Gristy, Cath

    2015-01-01

    In this paper, I respond to the call to articulate experiences of the messy realities of participatory research. I reflect on my engagement and struggle with the realities and ethics of a piece of case study research, which set out with a participatory approach. The project involved a group of young people from an isolated rural community who…

  20. Women's mental health during pregnancy: A participatory qualitative study.

    Science.gov (United States)

    Franks, Wendy L M; Crozier, Kenda E; Penhale, Bridget L M

    2017-08-01

    British public health and academic policy and guidance promotes service user involvement in health care and research, however collaborative research remains underrepresented in literature relating to pregnant women's mental health. The aim of this participatory research was to explore mothers' and professionals' perspectives on the factors that influence pregnant women's mental health. This qualitative research was undertaken in England with the involvement of three community members who had firsthand experience of mental health problems during pregnancy. All members of the team were involved in study design, recruitment, data generation and different stages of thematic analysis. Data were transcribed for individual and group discussions with 17 women who self-identified as experiencing mental health problems during pregnancy and 15 professionals who work with this group. Means of establishing trustworthiness included triangulation, researcher reflexivity, peer debriefing and comprehensive data analysis. Significant areas of commonality were identified between mothers' and professionals' perspectives on factors that undermine women's mental health during pregnancy and what is needed to support women's mental health. Analysis of data is provided with particular reference to contexts of relational, systemic and ecological conditions in women's lives. Women's mental health is predominantly undermined or supported by relational, experiential and material factors. The local context of socio-economic deprivation is a significant influence on women's mental health and service requirements. Copyright © 2016 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.

  1. Workplace Participatory Occupational Health/Health Promotion Program

    Science.gov (United States)

    Zhang, Yuan; Flum, Marian; Kotejoshyer, Rajashree; Fleishman, Jane; Henning, Robert; Punnett, Laura

    2018-01-01

    Nursing home employees experience high physical and psychosocial workloads, resulting in poor health outcomes. An occupational health/health promotion program, designed to facilitate employee participation, was initiated in three nursing homes. The aim of the current study was to evaluate facilitators and barriers of the program after 3-year implementation. Focus groups with employees and in-depth interviews with top and middle managers were conducted. The Social Ecological Model was used to organize the evaluation. Facilitators and barriers were reported from both managers’ and employees’ perspectives, and were categorized as intrapersonal, interpersonal, institutional, and corporate level. Management support, financial resources, and release time for participation were identified as the three most important factors. Supports from multiple levels including both human and environment, and managers and employees, are important for a successful participatory occupational health/health promotion program. PMID:26977705

  2. Unlocking community capabilities for improving maternal and newborn health: participatory action research to improve birth preparedness, health facility access, and newborn care in rural Uganda

    Directory of Open Access Journals (Sweden)

    Elizabeth Ekirapa-Kiracho

    2016-11-01

    Full Text Available Abstract Background Community capacities and resources must be harnessed to complement supply side initiatives addressing high maternal and neonatal mortality rates in Uganda. This paper reflects on gains, challenges and lessons learnt from working with communities to improve maternal and newborn health in rural Uganda. Methods A participatory action research project was supported from 2012 to 2015 in three eastern districts. This project involved working with households, saving groups, sub county and district leaders, transporters and village health teams in diagnosing causes of maternal and neonatal mortality and morbidity, developing action plans to address these issues, taking action and learning from action in a cyclical manner. This paper draws from project experience and documentation, as well as thematic analysis of 20 interviews with community and district stakeholders and 12 focus group discussions with women who had recently delivered and men whose wives had recently delivered. Results Women and men reported increased awareness about birth preparedness, improved newborn care practices and more male involvement in maternal and newborn health. However, additional direct communication strategies were required to reach more men beyond the minority who attended community dialogues and home visits. Saving groups and other saving modalities were strengthened, with money saved used to meet transport costs, purchase other items needed for birth and other routine household needs. However saving groups required significant support to improve income generation, management and trust among members. Linkages between savings groups and transport providers improved women’s access to health facilities at reduced cost. Although village health teams were a key resource for providing information, their efforts were constrained by low levels of education, inadequate financial compensation and transportation challenges. Ensuring that the village health

  3. Participatory approach to improving safety, health and working conditions in informal economy workplaces in Cambodia.

    Science.gov (United States)

    Kawakami, Tsuyoshi; Tong, Leng; Kannitha, Yi; Sophorn, Tun

    2011-01-01

    The present study aimed to improve safety and health in informal economy workplaces such as home workplaces, small construction sites, and rural farms in Cambodia by using "participatory" approach. The government, workers' and employers' organizations and NGOs jointly assisted informal economy workers in improving safety and health by using participatory training methodologies. The steps taken were: (1) to collect existing good practices in safety and health in Cambodia; (2) to develop new participatory training programmes for home workers and small construction sites referring to ILO's WISE training programme, and (3) to train government officers, workers, employers and NGOs as safety and health trainers. The participatory training programmes developed consisted of action-checklists associated with illustrations, good example photo sheets, and texts explaining practical, low-cost improvement measures. The established safety and health trainers reached many informal economy workers through their human networks, and trained them by using the developed participatory training programmes. More than 3,000 informal economy workers were trained and they implemented improvements by using low-cost methods. Participatory training methodologies and active cooperation between the government, workers, employers and NGOs made it possible to provide practical training for those involved in the informal economy workplaces.

  4. Participatory Action Research in the Field of Neonatal Intensive Care

    DEFF Research Database (Denmark)

    Nørgaard, Betty; Johannessen, Helle; Fenger-Grøn, Jesper

    2016-01-01

    : This PAR process was carried out from August 2011 to July 2013 and included participant observations, semi-structured interviews, multi sequential interviews, workshops, focus groups, group discussion, and a seminar. The theoretical framework of validity described by Herr and Anderson's three criteria......BACKGROUND: In neonatal intensive care units (NICUs) health care professionals typically give most of their attention to the infants and the mothers while many fathers feel uncertain and have an unmet need for support and guidance. This paper describes and discusses participatory action research...

  5. Lessons we are learning: using participatory action research to integrate palliative care, health promotion and public health through the DöBra research program in Sweden.

    Science.gov (United States)

    Tishelman, Carol

    2018-01-01

    Public health and health promotion approaches to end-of-life (EoL) research and care are still rare in Sweden. People remain generally ill-prepared for encounters with death and unable to advocate for quality EoL care; this may be reflected in Sweden's low scores for community engagement in the 2015 Quality of Death index. We have consolidated our endeavours into a cohesive national transdisciplinary research program, DöBra (a pun meaning both 'dying well' and 'awesome' in Swedish). In DöBra, we investigate how culture, the environment and conversation can promote constructive change and support better quality of life and death among the general population, in specific subgroups and in interventions directed to staff caring for dying individuals, their friends and families. DöBra uses ideas from new public health and the Ottawa Charter as umbrella theoretical frameworks and participatory action research as an overarching methodological approach. In DöBra we aim to achieve change in communities in a broad sense. In this interactive workshop, we therefore focus on the particular challenges we encounter in conducting stringent research when trying to catalyse, rather than control, change processes. We will share our ideas, experiences, reflections, tools and approaches as well as results, related to using a variety of strategies to bring together a broad range of stakeholders to co-create experience-based evidence through innovative approaches. We begin by linking theory, research and practice through discussion of the overarching ideas and individual projects, with the second part of the session based on audience engagement with various tools used in DöBra.

  6. Participatory design methods in telemedicine research

    DEFF Research Database (Denmark)

    Danbjørg, Dorthe Boe; Clemensen, Jane; Rothmann, Mette Juel

    together with the patients. Participatory design is a research design and methodology that encourages the participation of users in the design process of technological solutions. Therefore, it has a potential for designing technologies that actually reflect the needs of the users, why it is relevant within...... telemedicine. The aim of this presentation is to explain the process and theoretical framework of a PD project; give an example of a project including the applied methods, and to determine its application to telemedicine with focus on the rationale for genuine participation. Theory: Participation implies....... Methods: Key activities of a Participatory Design project comprise methods such as fieldwork; literature reviewing; development and testing, and user activities as workshops. Methods that support telling, making, enacting. For instance telling activities as drivers for participation, where practitioners...

  7. Participatory research, people with intellectual disabilities and ethical approval: making reasonable adjustments to enable participation.

    Science.gov (United States)

    Northway, Ruth; Howarth, Joyce; Evans, Lynne

    2015-02-01

    The aim of this paper is to explore how making reasonable adjustments to the process of securing ethical approval for research can facilitate the meaningful involvement of people with intellectual disabilities as members of a research team. This is achieved through critical reflection upon the approach taken within one participatory research study whose objective was to explore how people with intellectual disabilities understand abuse. Internationally participatory research studies (in which active involvement of community members in all stages of the research process is sought) are becoming increasingly common in the context of health care and, more specifically, within research involving people with intellectual disabilities. However, whilst it is acknowledged that participatory research gives rise to specific ethical challenges, how (or if) involvement in securing ethical approval is facilitated, is not discussed in most research reports. The significance of this paper is that it seeks to address this gap by exploring how meaningful participation can be promoted by making reasonable adjustments. Within the study, the research team worked in collaboration with the ethics committee to identify potential barriers that could prevent the participation of members of the research team who had intellectual disabilities. Reasonable adjustments (such as redesigning forms) were made to the processes involved in securing ethical approval. This study demonstrated that it is possible to ensure that ethical standards are upheld and the requirements of ethics committees met whilst also facilitating the meaningful involvement of people with intellectual disabilities. The reasonable adjustments approach explored within this paper can be translated into the context of clinical practice: making changes to the way that services are delivered can promote greater involvement of people with intellectual disabilities in their own health care. © 2014 John Wiley & Sons Ltd.

  8. Needs assessment for adapting TB directly observed treatment intervention programme in Limpopo Province, South Africa: A community-based participatory research approach

    Directory of Open Access Journals (Sweden)

    Jabu T. Mabunda

    2016-07-01

    Full Text Available Background: Limpopo Province is one of the hardest hit by tuberculosis and human immune virus infections in the country. The province has been implementing directly observed treatment strategy since 1996. However, the cure rate was 64% in 2015 and remains far from the set target by the World Health Organization of 85%. Poor health-care seeking and adherence behaviours were identified as major risk behaviours. Aim: To apply a community-based participatory research approach in identifying barriers and facilitators to health-care seeking and adherence to treatment, and to determine strategies and messages in order to inform the design of an adapted intervention programme. Setting: This study was conducted in three districts in the Limpopo Province, Capricorn, Mopani and Sekhukhune districts. Methods: Community participatory research approach was applied. Purposive sampling was used to sample participants. Focus group discussions were used to collect data. Participatory analysis was used comparing findings within and across all the participants. Results: A total of 161 participated in the study. Participants included coordinators, professional nurses, supporters and patients. Major modifiable behavioural-related barriers were lack of knowledge about tuberculosis, misinformation and misperceptions cultural beliefs, stigma and refusal of treatment support. Environment-related barriers were attitudes of health workers, lack of support by family and community, lack of food and use of alcohol and drugs. Strategies and messages included persuasive and motivational messages to promote healthy behaviour. Conclusion: Joint programmatic collaboration between the community and academic researchers is really needed for interventions to address the needs of the community. Keywords: Health seeking, Adherence, Community based participatory research, Tuberculosis

  9. Using community-based participatory research to design and initiate a study on immigrant worker health and safety in San Francisco's Chinatown restaurants.

    Science.gov (United States)

    Minkler, Meredith; Lee, Pam Tau; Tom, Alex; Chang, Charlotte; Morales, Alvaro; Liu, Shaw San; Salvatore, Alicia; Baker, Robin; Chen, Feiyi; Bhatia, Rajiv; Krause, Niklas

    2010-04-01

    Restaurant workers have among the highest rates of work-related illness and injury in the US, but little is known about the working conditions and occupational health status of Chinese immigrant restaurant workers. Community-based participatory research (CBPR) was employed to study restaurant working conditions and worker health in San Francisco's Chinatown. A community/academic/health department collaborative was formed and 23 restaurant workers trained on research techniques and worker health and safety. A worker survey instrument and a restaurant observational checklist were collaboratively developed. The checklist was piloted in 71 Chinatown restaurants, and the questionnaire administered to 433 restaurant workers. Restaurant workers, together with other partners, made substantial contributions to construction of the survey and checklist tools and improved their cultural appropriateness. The utility of the checklist tool for restaurant-level data collection was demonstrated. CBPR holds promise for both studying worker health and safety among immigrant Chinese restaurant workers and developing culturally appropriate research tools. A new observational checklist also has potential for restaurant-level data collection on worker health and safety conditions. (c) 2010 Wiley-Liss, Inc.

  10. Participatory methods for research prioritization in primary care: an analysis of the World Café approach in Ireland and the USA.

    Science.gov (United States)

    MacFarlane, Anne; Galvin, Rose; O'Sullivan, Madeleine; McInerney, Chris; Meagher, Eoghan; Burke, Daniel; LeMaster, Joseph W

    2017-06-01

    There are increasing imperatives for patients and members of the public to engage as partners in identifying health research priorities. The use of participatory methods to engage stakeholders in health care in research prioritization is not commonly reported. This article analyses the use of World Cafés as a participatory method for research prioritization with marginalized communities in Ireland and the USA. The principles of purposeful and snowball sampling were followed in both settings and a diverse range of community and health care stakeholders participated (n = 63 Ireland and n = 55 USA). The principles for a classic World Café were employed but there were novel features in each setting as well. Stewart et al.'s (Patients' and clinicians' research priorities. Health Expect 2011; 14: 439-48, conceptual framework for patient engagement was adapted and used to comparatively analyse the strengths and weaknesses of the World Cafés, focusing on agenda setting, engagement with research processes, interactional features and outputs. Design principles for World Cafés were found to align with high-quality patient engagement for research prioritization in both settings. They served to facilitate meaningful collaboration among stakeholder groups in research prioritization (research agenda setting) and explored research priorities (engagement with research). The café ambience, emphasis on hospitality and self-facilitation created an environment for dialogues within and across participating groups (interactional features). There was a commitment to follow-up actions with reference to possible subsequent research (outputs). The World Café is a valuable, participatory, flexible method that can be used with community and health care stakeholders for research prioritization with marginalized communities. © The Author 2016. Published by Oxford University Press.

  11. Qualitative Research and Community-Based Participatory Research: Considerations for Effective Dissemination in the Peer-Reviewed Literature.

    Science.gov (United States)

    Grieb, Suzanne Dolwick; Eder, Milton Mickey; Smith, Katherine C; Calhoun, Karen; Tandon, Darius

    2015-01-01

    Qualitative research is appearing with increasing frequency in the public health and medical literature. Qualitative research in combination with a community-based participatory research (CBPR) approach can be powerful. However little guidance is available on how to present qualitative research within a CBPR framework for peer-review publications. This article provides a brief overview of how qualitative research can advance CBPR partnerships and outlines practical guidelines for writing for publication about qualitative research within a CBPR framework to (1) guide partners with little experience publishing in peer-reviewed journals and/or (2) facilitate effective preparation of manuscripts grounded in qualitative research for peer-reviewed journals. We provide information regarding the specific benefits of qualitative inquiry in CBPR, tips for organizing the manuscript, questions to consider in preparing the manuscript, common mistakes in the presentation of qualitative research, and examples of peer-reviewed manuscripts presenting qualitative research conducted within a CBPR framework. Qualitative research approaches have tremendous potential to integrate community and researcher perspectives to inform community health research findings. Effective dissemination of CBPR informed qualitative research findings is crucial to advancing health disparities research.

  12. Youth researching youth: benefits, limitations and ethical considerations within a participatory research process

    Directory of Open Access Journals (Sweden)

    Cynthia G. Jardine

    2012-05-01

    Full Text Available Objectives. To examine the benefits, limitations and ethical issues associated with conducting participatory research on tobacco use using youth to research other youth. Study design. Community-based participatory research. Methods. Research on tobacco use was conducted with students in the K’àlemì Dene School and Kaw Tay Whee School in the Northwest Territories, Canada, using PhotoVoice. The Grade 9–12 students acted as researchers. Researcher reflections and observations were assessed using “member checking,” whereby students, teachers and community partners could agree or disagree with the researcher's interpretation. The students and teachers were further asked informally to share their own reflections and observations on this process. Results and conclusions. Using youth to research other youth within a participatory research framework had many benefits for the quality of the research, the youth researchers and the community. The research was perceived by the researchers and participants to be more valid and credible. The approach was more appropriate for the students, and the youth researchers gained valuable research experience and a sense of ownership of both the research process and results. Viewing smoking through their children's eyes was seen by the community to be a powerful and effective means of creating awareness of the community environment. Limitations of the approach were residual response bias of participants, the short period of time to conduct the research and failure to fully explore student motivations to smoke or not to smoke. Ethical considerations included conducting research with minors, difficulties in obtaining written parental consent, decisions on cameras (disposable versus digital and representation of all participants in the final research product.

  13. Development of a Mixed Methods Investigation of Process and Outcomes of Community-Based Participatory Research

    Science.gov (United States)

    Lucero, Julie; Wallerstein, Nina; Duran, Bonnie; Alegria, Margarita; Greene-Moton, Ella; Israel, Barbara; Kastelic, Sarah; Magarati, Maya; Oetzel, John; Pearson, Cynthia; Schulz, Amy; Villegas, Malia; White Hat, Emily R.

    2018-01-01

    This article describes a mixed methods study of community-based participatory research (CBPR) partnership practices and the links between these practices and changes in health status and disparities outcomes. Directed by a CBPR conceptual model and grounded in indigenous-transformative theory, our nation-wide, cross-site study showcases the value…

  14. How do the design features of health hackathons contribute to participatory medicine?

    Directory of Open Access Journals (Sweden)

    Karen Day

    2017-03-01

    identified by successful health hackathon participants; knowledge, patient focussed skills, analytical skills, software design skills and professional perspective. In common with previous studies we find that there are considerable social benefits that accrue in running a hackathon. Participants meet new people and learn first-hand of the challenges and opportunities provided by the skill sets and work environments of others. This work builds on the existing body of research concerning hackathons and in particular work in the context of participatory medicine

  15. Engaging stakeholders: lessons from the use of participatory tools for improving maternal and child care health services.

    Science.gov (United States)

    Ekirapa-Kiracho, Elizabeth; Ghosh, Upasona; Brahmachari, Rittika; Paina, Ligia

    2017-12-28

    Effective stakeholder engagement in research and implementation is important for improving the development and implementation of policies and programmes. A varied number of tools have been employed for stakeholder engagement. In this paper, we discuss two participatory methods for engaging with stakeholders - participatory social network analysis (PSNA) and participatory impact pathways analysis (PIPA). Based on our experience, we derive lessons about when and how to apply these tools. This paper was informed by a review of project reports and documents in addition to reflection meetings with the researchers who applied the tools. These reports were synthesised and used to make thick descriptions of the applications of the methods while highlighting key lessons. PSNA and PIPA both allowed a deep understanding of how the system actors are interconnected and how they influence maternal health and maternal healthcare services. The findings from the PSNA provided guidance on how stakeholders of a health system are interconnected and how they can stimulate more positive interaction between the stakeholders by exposing existing gaps. The PIPA meeting enabled the participants to envision how they could expand their networks and resources by mentally thinking about the contributions that they could make to the project. The processes that were considered critical for successful application of the tools and achievement of outcomes included training of facilitators, language used during the facilitation, the number of times the tool is applied, length of the tools, pretesting of the tools, and use of quantitative and qualitative methods. Whereas both tools allowed the identification of stakeholders and provided a deeper understanding of the type of networks and dynamics within the network, PIPA had a higher potential for promoting collaboration between stakeholders, likely due to allowing interaction between them. Additionally, it was implemented within a participatory action

  16. Balancing Between Privacy and Patient Needs for Health Information in the Age of Participatory Health and Social Media: A Scoping Review.

    Science.gov (United States)

    Househ, Mowafa; Grainger, Rebecca; Petersen, Carolyn; Bamidis, Panagiotis; Merolli, Mark

    2018-04-22

     With the increased use of participatory health enabling technologies, such as social media, balancing the need for health information with patient privacy and confidentiality has become a more complex and immediate concern. The purpose of this paper produced by the members of the IMIA Fbrticipatoiy Health and Social Media (PHSM) working group is to investigate patient needs for health information using participatory health enabling technologies, while balancing their needs for privacy and confidentiality.  Six domain areas including media sharing platforms, patient portals, web-based platforms, crowdsourcing websites, medical avatars, and other mobile health technologies were identified by five members of the IMIA PHSM working group as relevant to participatory health and the balance between data sharing and patient needs for privacy and confidentiality. After identifying the relevant domain areas, our scoping review began by searching several databases such as PubMed, MEDLINE, Scopus, and Google Scholar using a variety of key search terms.  A total of 1,973 studies were identified, of which 68 studies met our inclusion criteria and were included in the analysis. Results showed that challenges for balancing patient needs for information and privacy and confidentiality concerns included: cross-cultural understanding, clinician and patient awareness, de-identification of data, and commercialization of patient data. Some opportunities identified were patient empowerment, connecting participatory health enabling technologies with clinical records, open data sharing agreement, and e-consent.  Balancing between privacy and patient needs for health information in the age of participatory health and social media offers several opportunities and challenges. More people are engaging in actively managing health through participatory health enabling technologies. Such activity often includes sharing health information and with this comes a perennial tension between

  17. Elements for harnessing participatory action research to strengthen health managers' capacity: a critical interpretative synthesis.

    Science.gov (United States)

    Tetui, Moses; Zulu, Joseph Mumba; Hurtig, Anna-Karin; Ekirapa-Kiracho, Elizabeth; Kiwanuka, Suzanne N; Coe, Anna-Britt

    2018-04-19

    Health managers play a key role in ensuring that health services are responsive to the needs of the population. Participatory action research (PAR) is one of the approaches that have been used to strengthen managers' capacity. However, collated knowledge on elements for harnessing PAR to strengthen managers' capacity is missing. This paper bridges this gap by reviewing existing literature on the subject matter. A critical interpretive synthesis method was used to interrogate eight selected articles. These articles reported the use of PAR to strengthen health managers' capacity. The critical interpretive synthesis method's approach to analysis guided the synthesis. Here, the authors interpretively made connections and linkages between different elements identified in the literature. Finally, the Atun et al. (Heal Pol Plann, 25:104-111, 2010) framework on integration was used to model the elements synthesised in the literature into five main domains. Five elements with intricate bi-directional interactions were identified in the literature reviewed. These included a shared purpose, skilled facilitation and psychological safety, activity integration into organisational procedures, organisational support, and external supportive monitoring. A shared purpose of the managers' capacity strengthening initiative created commitment and motivation to learn. This purpose was built upon a set of facilitation skills that included promoting participation, self-efficacy and reflection, thereby creating a safe psychological space within which the managers interacted and learnt from each other and their actions. Additionally, an integrated intervention strengthened local capacity and harnessed organisational support for learning. Finally, supportive monitoring from external partners, such as researchers, ensured quality, building of local capacity and professional safety networks essential for continued learning. The five elements identified in this synthesis provide a basis upon

  18. Developments in Participatory Design of Health Information Technology - A Review of PDC Publications from 1990-2016.

    Science.gov (United States)

    Kanstrup, Anne Marie; Madsen, Jacob; Nøhr, Christian; Bygholm, Ann; Bertelsen, Pernille

    2017-01-01

    The landscape of Participatory Design (PD) of Health Information Technology (HIT) is diverse and constantly evolving. This paper reviews the publications in the proceedings from the Participatory Design Conferences (PDCs) that have been held every two years since 1990. We used the Matrix Method to identify, describe and synthesise HIT publications from the proceedings. A total of 47 papers were included in the review and analysed in relation to six themes. The analysis reveals a significant volume of HIT research at PDCs, with a large amount of attention to digitalisation of health information, work procedures, records, secondary healthcare and health professionals. However, the analysis also shows a development from a primary focus on health workers and hospitals to a recent attention on HIT in everyday life and PD with patients, relatives, neighbourhoods and citizens in general. Additionally, the review shows a growing number of PD methods being applied. This paper concludes that research on PD and HIT appears to be maturing and developing with ongoing technological and societal development.

  19. Urban forestry research needs: a participatory assessment process

    Science.gov (United States)

    Kathleen L. Wolf; Linda E. Kruger

    2010-01-01

    New research initiatives focusing on urban ecology and natural resources are underway. Such programs coincide with increased local government action in urban forest planning and management, activities that are enhanced by scientific knowledge. This project used a participatory stakeholder process to explore and understand urban forestry research and technology transfer...

  20. A Framework for Clarifying “Participation” in Participatory Research to Prevent its Rejection for the Wrong Reasons

    NARCIS (Netherlands)

    Barreteau, O.; Bots, P.W.G.; Daniell, K.A.

    2010-01-01

    Participatory research relies on stakeholder inputs to obtain its acclaimed benefits of improved social relevance, validity, and actionability of research outcomes. We focus here on participatory research in the context of natural resource management. Participants’ acceptance of participatory

  1. Medical education for equity in health: a participatory action research involving persons living in poverty and healthcare professionals.

    Science.gov (United States)

    Hudon, Catherine; Loignon, Christine; Grabovschi, Cristina; Bush, Paula; Lambert, Mireille; Goulet, Émilie; Boyer, Sophie; De Laat, Marianne; Fournier, Nathalie

    2016-04-12

    Improving the knowledge and competencies of healthcare professionals is crucial to better address the specific needs of persons living in poverty and avoid stigmatization. This study aimed to explore the needs and expectations of persons living in poverty and healthcare professionals in terms of medical training regarding poverty and its effects on health and healthcare. We conducted a participatory action research study using photovoice, a method using photography, together with merging of knowledge and practice, an approach promoting dialogue between different sources of knowledge. Nineteen healthcare professionals and persons from an international community organization against poverty participated in the study. The first phase included 60 meetings and group sessions to identify the perceived barriers between persons living in poverty and healthcare teams. In the second phase, sub-committees deployed action plans in academic teaching units to overcome barriers identified in the first phase. Data were analysed through thematic analysis, using NVivo, in collaboration with five non-academic co-researchers. Four themes in regard to medical training were highlighted: improving medical students' and residents' knowledge on poverty and the living conditions of persons living in poverty; improving their understanding of the reality of those people; improving their relational skills pertaining to communication and interaction with persons living in poverty; improving their awareness and capacity for self-reflection. At the end of the second phase, actions were undertaken such as improving knowledge of the living conditions of persons living in poverty by posting social assistance rates, and tailoring interventions to patients' reality by including sociodemographic information in electronic medical records. Our findings also led to a participatory research project aiming to improve the skills and competency of residents and health professionals in regard to the quality of

  2. Paradigm shifts: using a participatory leadership process to redesign health systems.

    Science.gov (United States)

    Saleeby, Erin; Holschneider, Christine H; Singhal, Rita

    2014-12-01

    Physicians have increasingly given up private practices to become members of, and key stakeholders in, large healthcare systems. These systems are currently transforming to meet the Triple Aim: guaranteeing the equitable provision of high-quality, evidence-based care at a reasonable cost. Participatory leadership is an organizational change theory that engages key stakeholders as architects in the transformation process. This review highlights the utility of this leadership strategy in designing care for women's health. Our blueprint describing participatory leadership theory in women's health systems change is discussed in three case studies, highlighting what we call the six Ps of participatory leadership: participants, principles, purpose, process, and power. The 'sixth P', product, can then be substantially influential in changing the paradigm of care. Obstetrics and gynecology is increasingly practiced in large health systems responsible for the health of populations. Innovations in clinical practice impact care at the level of the individual. In order for advances in clinical practice to reach broad populations of women, they must be integrated into a delivery system. Physician engagement in leadership during this time of system transformation is of critical importance.

  3. A Framework for Clarifying "Participation" in Participatory Research to Prevent its Rejection for the Wrong Reasons

    Directory of Open Access Journals (Sweden)

    Olivier Barreteau

    2010-06-01

    Full Text Available Participatory research relies on stakeholder inputs to obtain its acclaimed benefits of improved social relevance, validity, and actionability of research outcomes. We focus here on participatory research in the context of natural resource management. Participants' acceptance of participatory research processes is key to their implementation. Our first assumption is that this positive view and acceptance of participation in research processes is a public good for the whole participatory research community. We also assume that the diversity of participatory forms of research is rarely considered by potential participants when they make their decisions about whether or not to participate in a proposed process. We specifically address how to avoid stakeholders' reluctance to be involved in participatory research projects based on disillusion with past experiences. We argue that the disappointment experienced by stakeholders and other participants (i.e., researchers and policy makers can be avoided by being upfront and precise about how "participation" will be implemented, and what kind of involvement is expected from participants. Such a collective effort from the research community can also clarify the variety of possible implementations for potential participants. Building on earlier efforts to characterize and categorize the diversity of participatory research approaches, we develop a conceptual analytic procedural framework to make participants' roles explicit in the implementation of different participatory research processes. This framework consists of three facets: (1 the flows of information among participants and the control over these flows for each step in a process, i.e., who will be expected to produce information, who will use this information, and who will receive the results; (2 the timing of the involvement of participants in the different steps of the research process, and the framing power that is associated with each process

  4. The Development of Research Skills in Young Adults with Intellectual Disability in Participatory Research

    Science.gov (United States)

    Morgan, Michelle F.; Moni, Karen B.; Cuskelly, Monica

    2015-01-01

    There is limited information about specific research constructs developed by adults with intellectual disability in undertaking research despite increasing involvement in research "with" rather than "on" these individuals. Participatory research was used with three young adults with intellectual disability to collaboratively…

  5. Using Community-Based Participatory Research to Identify Environmental Justice Issues in an Inner-City Community and Inform Urban Planning.

    Science.gov (United States)

    Mansyur, Carol Leler; Jeng, Hueiwang Anna; Holloman, Erica; DeBrew, Linwood

    2016-01-01

    The Southeast CARE Coalition has been using community-based participatory research to examine environmental degradation in the Southeast Community, Newport News, Virginia. A survey was developed to collect assessment data. Up to 66% of respondents were concerned about environmental problems in their community. Those with health conditions were significantly more likely to identify specific environmental problems. The top 5 environmental concerns included coal dust, air quality, crime, water quality, and trash. The community-based participatory research process is building community capacity and participation, providing community input into strategic planning, and empowering community members to take control of environmental justice issues in their community.

  6. How participatory action research changed our view of the challenges of shared decision-making training

    DEFF Research Database (Denmark)

    Ammentorp, Jette; Timmermann, Connie; Wolderslund, Maiken

    2018-01-01

    OBJECTIVE: This paper aims to demonstrate how the use of participatory action research (PAR) helped us identify ways to respond to communication challenges associated with shared decision-making (SDM) training. METHODS: Patients, relatives, researchers, and health professionals were involved...... in a PAR process that included: (1) two theatre workshops, (2) a pilot study of an SDM training module involving questionnaires and evaluation meetings, and (3) three reflection workshops. RESULTS: The PAR process revealed that health professionals often struggled with addressing existential issues...... communication concepts such as SDM in communication training, research methods such as PAR can be used to improve understanding and identify the needs and priorities of both patients and health professionals....

  7. Development of a Web-Based Health Care Intervention for Patients With Heart Disease: Lessons Learned From a Participatory Design Study.

    Science.gov (United States)

    Noergaard, Birgitte; Sandvei, Marianne; Rottmann, Nina; Johannessen, Helle; Wiil, Uffe; Schmidt, Thomas; Pedersen, Susanne S

    2017-05-17

    The use of telemedicine technologies in health care has increased substantially, together with a growing interest in participatory design methods when developing telemedicine approaches. We present lessons learned from a case study involving patients with heart disease and health care professionals in the development of a personalized Web-based health care intervention. We used a participatory design approach inspired by the method for feasibility studies in software development. We collected qualitative data using multiple methods in 3 workshops and analyzed the data using thematic analysis. Participants were 7 patients with diagnosis of heart disease, 2 nurses, 1 physician, 2 systems architects, 3 moderators, and 3 observers. We present findings in 2 parts. (1) Outcomes of the participatory design process: users gave valuable feedback on ease of use of the platforms' tracking tools, platform design, terminology, and insights into patients' monitoring needs, information and communication technologies skills, and preferences for self-management tools. (2) Experiences from the participatory design process: patients and health care professionals contributed different perspectives, with the patients using an experience-based approach and the health care professionals using a more attitude-based approach. The essential lessons learned concern planning and organization of workshops, including the finding that patients engaged actively and willingly in a participatory design process, whereas it was more challenging to include and engage health care professionals. ©Birgitte Noergaard, Marianne Sandvei, Nina Rottmann, Helle Johannessen, Uffe Wiil, Thomas Schmidt, Susanne S Pedersen. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 17.05.2017.

  8. Using Participatory Learning & Action (PLA) research techniques for inter-stakeholder dialogue in primary healthcare: an analysis of stakeholders' experiences.

    Science.gov (United States)

    de Brún, T; O'Reilly-de Brún, M; Van Weel-Baumgarten, E; Burns, N; Dowrick, C; Lionis, C; O'Donnell, C; Mair, F S; Papadakaki, M; Saridaki, A; Spiegel, W; Van Weel, C; Van den Muijsenbergh, M; MacFarlane, A

    2017-01-01

    It is important for health care workers to know the needs and expectations of their patients. Therefore, service users have to be involved in research. To achieve a meaningful dialogue between service users, healthcare workers and researchers, participatory methods are needed. This paper describes how the application of a specific participatory methodology, Participatory Learning and Action (PLA) can lead to such a meaningful dialogue. In PLA all stakeholders are regarded as equal partners and collaborators in research.During 2011-2015, a European project called RESTORE used PLA in Austria, Greece, Ireland, The Netherlands and the UK to investigate how communication between primary health care workers and their migrant patients could be improved.Seventy eight migrants, interpreters, doctors, nurses and other key stakeholders (see Table 2) participated in 62 PLA sessions. These dialogues (involving discussions, activities, PLA techniques and evaluations) were generally 2-3 h long and were recorded and analysed by the researchers.Participants reported many positive experiences about their dialogues with other stakeholders. There was a positive, trusting atmosphere in which all stakeholders could express their views despite differences in social power. This made for better understanding within and across stakeholder groups. For instance a doctor changed her view on the use of interpreters after a migrant explained why this was important. Negative experiences were rare: some doctors and healthcare workers thought the PLA sessions took a lot of time; and despite the good dialogue, there was disappointment that very few migrants used the new interpreting service. Background In order to be effective, primary healthcare must understand the health needs, values and expectations of the population it serves. Recent research has shown that the involvement of service users and other stakeholders and gathering information on their perspectives can contribute positively to many

  9. Using Participatory Design to design and develop mHealth for women with osteoporosis

    DEFF Research Database (Denmark)

    Jakobsen, Pernille; Kock Wiil, Uffe; Søndergaard, Jens

    2017-01-01

    and sick, and the women should be aided in learning to live with osteoporosis and how to prevent fractures (2). The effects of mHealth on self-care and self-management appear to be promising (3). Involvement of users in health care research is important, especially when developing new technologies...... The design and development of mHealth is based on a participatory design process. In the first phase, needs among the users are identified using qualitative methods as participant observations (10 hours), semi structured interviews (n=17) and focus groups (n=3). In the second phase, ideas and concepts...

  10. KESEHATAN SEKSUAL DAN REPRODUKSI SERTA FASILITAS KESEHATAN DI LOKASI PROSTITUSI: COMMUNITY BASED PARTICIPATORY RESEARCH DENGAN PHOTOVOICE PADA PEKERJA SEKSUAL DI GUNUNG LAWU, BALI

    Directory of Open Access Journals (Sweden)

    Made Diah Lestari

    2017-01-01

    Full Text Available Sex workers are victims of prostitution because prostitution endangers their physical, social, and psychological health; therefore, a movement/action that empowers the community in protecting the physical, social, and psychological health of sex workers is needed. This study tries to see the views of sex workers on reproductive health and the support of health facilities in their community. The research subjects were female sex workers who work within the scope of localization (complexes in Bali. The research approach used was a community - based participatory research (CBPR using the photovoice method as a media to answer the research questions. Participants were 11 sex workers and social workers in Gunung Lawu. The data were analyzed using a participatory analysis and coding system. The results show stigma and discrimination were still exsist. Reproductive health is important for sex workers, but they realize that the control of their health conditions is on the external side namely the customers, pimps, and the availability of health facilities in their environment. Unfortunately, health facilities are also still limited.

  11. Applying community-based participatory research to better understand and improve kinship care practices

    DEFF Research Database (Denmark)

    Chukwudozie, Oge; Feinstein, Clare; Jensen, Celina

    2015-01-01

    While the principles behind community-based participatory research are firmly established, the process of taking community-based participatory research with children and youth to scale and integrating it into the programming of non-governmental organizations has been scarcely documented. This art...... and highlights how the research process enabled action and advocacy initiatives at different levels-leading to an increase in support and policy attention for children living in kinship care....

  12. Community based needs assessment in an urban area; A participatory action research project

    Directory of Open Access Journals (Sweden)

    Ahari Saeid

    2012-03-01

    Full Text Available Abstract Background Community assessment is a core function of public health. In such assessments, a commitment to community participation and empowerment is at the heart of the WHO European Healthy Cities Network, reflecting its origins in health for all and the Ottawa Charter for Health Promotion. This study employs a participation and empowerment plan in order to conduct community assessment. Methods The method of participatory action research (PAR was used. The study was carried out in an area of high socio-economic deprivation in Ardabil, a city in the northwest of Iran, which is currently served by a branch of the Social Development Center (SDC. The steering committee of the project was formed by some university faculty members, health officials and delegates form Farhikhteh non-governmental organization and representatives from twelve blocks or districts of the community. Then, the representatives were trained and then conducted focus groups in their block. The focus group findings informed the development of the questionnaire. About six hundred households were surveyed and study questionnaires were completed either during face-to-face interviews by the research team (in case of illiteracy or via self-completion. The primary question for the residents was: 'what is the most important health problem in your community? Each health problem identified by the community was weighted based on the frequency it was selected on the survey, and steering committee perception of the problem's seriousness, urgency, solvability, and financial load. Results The main problems of the area appeared to be the asphalt problem, lack of easy access to medical centers, addiction among relatives and unemployment of youth. High participation rates of community members in the steering committee and survey suggest that the PAR approach was greatly appreciated by the community and that problems identified through this research truly reflect community opinion

  13. Practical Solutions for Pesticide Safety: A Farm and Research Team Participatory Model.

    Science.gov (United States)

    Galvin, Kit; Krenz, Jen; Harrington, Marcy; Palmández, Pablo; Fenske, Richard A

    2016-01-01

    Development of the Practical Solutions for Pesticide Safety guide used participatory research strategies to identify and evaluate solutions that reduce pesticide exposures for workers and their families and to disseminate these solutions. Project principles were (1) workplace chemicals belong in the workplace, and (2) pesticide handlers and farm managers are experts, with direct knowledge of production practices. The project's participatory methods were grounded in self-determination theory. Practical solutions were identified and evaluated based on five criteria: practicality, adaptability, health and safety, novelty, and regulatory compliance. Research activities that had more personal contact provided better outcomes. The Expert Working Group, composed of farm managers and pesticide handlers, was key to the identification of solutions, as were farm site visits. Audience participation, hands-on testing, and orchard field trials were particularly effective in the evaluation of potential solutions. Small work groups in a Regional Advisory Committee provided the best direction and guidance for a "user-friendly" translational document that provided evidence-based practical solutions. The "farmer to farmer" format of the guide was endorsed by both the Expert Working Group and the Regional Advisory Committee. Managers and pesticide handlers wanted to share their solutions in order to "help others stay safe," and they appreciated attribution in the guide. The guide is now being used in educational programs across the region. The fundamental concept that farmers and farmworkers are innovators and experts in agricultural production was affirmed by this study. The success of this process demonstrates the value of participatory industrial hygiene in agriculture.

  14. Supporting the use of theory in cross-country health services research: a participatory qualitative approach using Normalisation Process Theory as an example.

    Science.gov (United States)

    O'Donnell, Catherine A; Mair, Frances S; Dowrick, Christopher; Brún, Mary O'Reilly-de; Brún, Tomas de; Burns, Nicola; Lionis, Christos; Saridaki, Aristoula; Papadakaki, Maria; Muijsenbergh, Maria van den; Weel-Baumgarten, Evelyn van; Gravenhorst, Katja; Cooper, Lucy; Princz, Christine; Teunissen, Erik; Mareeuw, Francine van den Driessen; Vlahadi, Maria; Spiegel, Wolfgang; MacFarlane, Anne

    2017-08-21

    To describe and reflect on the process of designing and delivering a training programme supporting the use of theory, in this case Normalisation Process Theory (NPT), in a multisite cross-country health services research study. Participatory research approach using qualitative methods. Six European primary care settings involving research teams from Austria, England, Greece, Ireland, The Netherlands and Scotland. RESTORE research team consisting of 8 project applicants, all senior primary care academics, and 10 researchers. Professional backgrounds included general practitioners/family doctors, social/cultural anthropologists, sociologists and health services/primary care researchers. Views of all research team members (n=18) were assessed using qualitative evaluation methods, analysed qualitatively by the trainers after each session. Most of the team had no experience of using NPT and many had not applied theory to prospective, qualitative research projects. Early training proved didactic and overloaded participants with information. Drawing on RESTORE's methodological approach of Participatory Learning and Action, workshops using role play, experiential interactive exercises and light-hearted examples not directly related to the study subject matter were developed. Evaluation showed the study team quickly grew in knowledge and confidence in applying theory to fieldwork.Recommendations applicable to other studies include: accepting that theory application is not a linear process, that time is needed to address researcher concerns with the process, and that experiential, interactive learning is a key device in building conceptual and practical knowledge. An unanticipated benefit was the smooth transition to cross-country qualitative coding of study data. A structured programme of training enhanced and supported the prospective application of a theory, NPT, to our work but raised challenges. These were not unique to NPT but could arise with the application of any

  15. Partnership readiness for community-based participatory research.

    Science.gov (United States)

    Andrews, Jeannette O; Newman, Susan D; Meadows, Otha; Cox, Melissa J; Bunting, Shelia

    2012-08-01

    The use of a dyadic lens to assess and leverage academic and community partners' readiness to conduct community-based participatory research (CBPR) has not been systematically investigated. With a lack of readiness to conduct CBPR, the partnership and its products are vulnerable. The purpose of this qualitative study was to explore the dimensions and key indicators necessary for academic and community partnership readiness to conduct CBPR. Key informant interviews and focus groups (n = 36 participants) were conducted with academic and community participants who had experiences with CBPR partnerships. A 'framework analysis' approach was used to analyze the data and generate a new model, CBPR Partnership Readiness Model. Antecedents of CBPR partnership readiness are a catalyst and mutual interest. The major dimensions of the CBPR Partnership Readiness Model are (i) goodness of fit, (ii) capacity, and (iii) operations. Preferred outcomes are sustainable partnership and product, mutual growth, policy and social and health impact on the community. CBPR partnership readiness is an iterative and dynamic process, partnership and issue specific, influenced by a range of environmental and contextual factors, amenable to change and essential for sustainability and promotion of health and social change in the community.

  16. Using community-based participatory research in parish nursing: a win-win situation!

    Science.gov (United States)

    Maitlen, Lynn A; Bockstahler, Amie M; Belcher, Anne E

    2012-01-01

    Parish nurses contribute to community health through the expertise and programming they provide to and through faith communities. Application of community-based participatory research (CBPR) principles helps develop, implement, and evaluate effective community interventions. University graduate students partnered with a Hospital Parish Nurse Program (HPNP) in an urban community to provide assessment data in a CBPR project that led the HPNP to focus resources and interventions on high obesity rates. The HPNP utilized data to write grant proposals to expand community services to impact obesity.

  17. Caring communities as collective learning process: findings and lessons learned from a participatory research project in Austria.

    Science.gov (United States)

    Wegleitner, Klaus; Schuchter, Patrick

    2018-04-01

    By now, the public health end-of-life care approach is well established and has induced diverse initiatives-subsumed under the concept of compassionate or caring communities-to engage the community in supporting vulnerable, dying people and their beloved ones. In the light of a participatory research project our paper examines the question: what are the deeper ideas behind caring communities and what constitutes a caring community? A multi-level analysis based on (I) qualitative research with focus groups and interviews with community members within the project; (II) the reflection of the role of participatory research in caring community initiatives, and (III) the meta-analysis of an international expert workshop, which allowed to discuss our experiences and insights in the light of international caring community models and expertise. Our analysis of qualities ("ingredients") of a caring community, from the perspective of community members, highlighted the importance of the co-creation of supportive care relationships in the local care web, through everyday life solidarity in the neighbourhood, appreciating and exchanging the wisdom of care, and also marked the role of professionals as enablers. Participatory research in caring community developments has the potential to engage and empower citizens, and to interlink existential care-stories with questions about the structural and political environments of appropriate end-of-life care. The caring community movement and public health end-of-life care has to maintain their critical potential against the commercialization and fragmentation of care (services), but also without "romanticizing" communities. Prospective caring community progresses need (I) an ecological health-promotion framework for action and (II) social learning processes along the existential experiences and the wisdom of community members, complementing each other. Organizing existential-political care dialogues can contribute to an ethic of caring

  18. Witness for Wellness: preliminary findings from a community-academic participatory research mental health initiative.

    Science.gov (United States)

    Bluthenthal, Ricky N; Jones, Loretta; Fackler-Lowrie, Nicole; Ellison, Marcia; Booker, Theodore; Jones, Felica; McDaniel, Sharon; Moini, Moraya; Williams, Kamau R; Klap, Ruth; Koegel, Paul; Wells, Kenneth B

    2006-01-01

    Quality improvement programs promoting depression screening and appropriate treatment can significantly reduce racial and ethnic disparities in mental-health care and outcomes. However, promoting the adoption of quality-improvement strategies requires more than the simple knowledge of their potential benefits. To better understand depression issues in racial and ethnic minority communities and to discover, refine, and promote the adoption of evidence-based interventions in these communities, a collaborative academic-community participatory partnership was developed and introduced through a community-based depression conference. This partnership was based on the community-influenced model used by Healthy African-American Families, a community-based agency in south Los Angeles, and the Partners in Care model developed at the UCLA/RAND NIMH Health Services Research Center. The integrated model is described in this paper as well as the activities and preliminary results based on multimethod program evaluation techniques. We found that combining the two models was feasible. Significant improvements in depression identification, knowledge about treatment options, and availability of treatment providers were observed among conference participants. In addition, the conference reinforced in the participants the importance of community mobilization for addressing depression and mental health issues in the community. Although the project is relatively new and ongoing, already substantial gains in community activities in the area of depression have been observed. In addition, new applications of this integrated model are underway in the areas of diabetes and substance abuse. Continued monitoring of this project should help refine the model as well as assist in the identification of process and outcome measures for such efforts.

  19. Contextual Exploration of a New Family Caregiver Support Concept for Geriatric Settings Using a Participatory Health Research Strategy.

    Science.gov (United States)

    Dorant, Elisabeth; Krieger, Theresia

    2017-11-28

    Family caregivers are the backbone of the long-term care support system within the home environment. Comprehensive caregiver support programs require collaboration and coordination within the system. A new public health concept, Vade Mecum, aims to harmonize and professionalize family caregiver support initiatives in geriatric care settings in the Euregion Maas-Rhine. Exploration of the new concept recently started in Germany to gain in-depth insight into current support and the needs of the geriatric care team and family caregivers. Within the context of an exploratory qualitative study, a participatory health research (PHR) strategy was applied to make optimal use of experience and knowledge from the system. Care professionals, engaged as co-researchers, were responsible for decisions about the research question, data collection methods and procedures of engaging family caregivers. A research team representing all professions within the geriatric department was formed. Research objectives were formulated and an appropriate mix of qualitative data collection methods consisting of interviews, focus groups and story-telling was chosen. Needs and expectations of the new concept, and practical solutions for involving family caregivers were discussed. A PHR strategy resulted in initiating a qualitative study in a geriatric care setting carried out by care professionals from the department. Knowledge was generated in a co-creative manner, and co-researchers were empowered. A comprehensive understanding of the system serves as a starting point for advancement of the new family caregiver concept.

  20. Peer-led Aboriginal parent support: Program development for vulnerable populations with participatory action research.

    Science.gov (United States)

    Munns, Ailsa; Toye, Christine; Hegney, Desley; Kickett, Marion; Marriott, Rhonda; Walker, Roz

    2017-10-01

    Participatory action research (PAR) is a credible, culturally appropriate methodology that can be used to effect collaborative change within vulnerable populations. This PAR study was undertaken in a Western Australian metropolitan setting to develop and evaluate the suitability, feasibility and effectiveness of an Aboriginal peer-led home visiting programme. A secondary aim, addressed in this paper, was to explore and describe research methodology used for the study and provide recommendations for its implementation in other similar situations. PAR using action learning sets was employed to develop the parent support programme and data addressing the secondary, methodological aim were collected through focus groups using semi-structured and unstructured interview schedules. Findings were addressed throughout the action research process to enhance the research process. The themes that emerged from the data and addressed the methodological aim were the need for safe communication processes; supportive engagement processes and supportive organisational processes. Aboriginal peer support workers (PSWs) and community support agencies identified three important elements central to their capacity to engage and work within the PAR methodology. This research has provided innovative data, highlighting processes and recommendations for child health nurses to engage with the PSWs, parents and community agencies to explore culturally acceptable elements for an empowering methodology for peer-led home visiting support. There is potential for this nursing research to credibly inform policy development for Aboriginal child and family health service delivery, in addition to other vulnerable population groups. Child health nurses/researchers can use these new understandings to work in partnership with Aboriginal communities and families to develop empowering and culturally acceptable strategies for developing Aboriginal parent support for the early years. Impact Statement Child

  1. Data analysis in participatory research with adults with Asperger’s syndrome

    OpenAIRE

    Robinson, Jacqueline

    2015-01-01

    This chapter explores how data analysis was conducted in a participatory methodology involving adults with Asperger's syndrome as co-researchers. It also explores the findings of the research and discusses how this can inform the research process.

  2. Building Capacity in the Sikh Asian Indian Community to Lead Participatory Oral Health Projects.

    Science.gov (United States)

    Kavathe, Rucha; Islam, Nadia; Zanowiak, Jennifer; Wyatt, Laura; Singh, Hardayal; Northridge, Mary E

    2018-01-01

    Lack of access to oral health care is a significant burden for disadvantaged populations, yet rarely draws the attention of policymakers or community leaders. To understand how UNITED SIKHS identified oral health care as a priority need through its involvement in community-based participatory research (CBPR) initiatives and local data collection, thereby building its capacity to lead participatory oral health projects. The foundation for the partnership between UNITED SIKHS and the New York University (NYU) Prevention Research Center (PRC) was the joint implementation of a CBPR project to prevent diabetes in the Sikh Asian Indian community. Project partners also included a community coalition composed of religious leaders, health providers, members of the media, and dental students and faculty at the NYU College of Dentistry (NYU Dentistry). A community needs and resources assessment survey was jointly developed and conducted in 2010 to better understand health needs in the Sikh community. Fewer than one-half of the Sikh participants (43.0%) reported ever receiving a check-up or screening by a dentist, and of those who did, only one-half (50.0%) reported that it occurred in the past 12 months. Upon clinical assessment, more than one-half of Sikh adults (58.2%) had untreated dental decay. The collection and analysis of local data motivated UNITED SIKHS to develop new priorities based upon the findings. UNITED SIKHS applied for and received external funding to lead a CBPR project that developed, implemented, evaluated, and disseminated a culturally tailored oral health and healthy living curriculum for the Sikh Asian Indian community.

  3. Cooking for One or Two: Applying Participatory Action Research to improve community-dwelling older adults' health and well-being.

    Science.gov (United States)

    Chojenta, Catherine; Mingay, Edwina; Gresham, Ellie; Byles, Julie

    2018-04-01

    This paper describes the process of the redevelopment and expansion of Cooking for One or Two, a community-based nutrition education program for older adults. This project took place in a large regional city in NSW Australia from September 2011 to September 2013. Previous Cooking for One or Two participants and Hunter Medical Research Institute Research Register members were recruited for focus groups (n = 37), recipe testing (n = 19) and telephone interviews (n = 55) to aid in the development and expansion of the program. Participant's experiences and preferences informed the development of a supplementary cookbook and add-on education modules. Through a variety of methods, the research team sought ongoing feedback on the content and direction of the program. Content experts also reviewed the health promotion information for appropriateness. Utilising the Participatory Action Research process resulted in an expanded set of materials for Cooking for One or Two that can enable older people to engage in peer-to-peer education and to take care of their nutritional and social health. The process is a valuable example of the success of ongoing collaboration between researchers and program developers with the target population. SO WHAT?: While the research team developed evidence-based content for the expanded program, the key to success was the continued engagement with the target population. This engagement fostered a sense of ownership over the program by participants and has led to continued support by the target population. © 2018 Australian Health Promotion Association.

  4. Mentoring and Training of Cancer-Related Health Disparities Researchers Committed to Community-Based Participatory Research.

    Science.gov (United States)

    Felder, Tisha M; Braun, Kathryn L; Brandt, Heather M; Khan, Samira; Tanjasiri, Sora; Friedman, Daniela B; Armstead, Cheryl A; Okuyemi, Kolawole S; Hébert, James R

    2015-01-01

    The National Cancer Institute's (NCI) Community Networks Program Centers (CNPCs) provide community-based participatory research (CBPR)-oriented mentoring and training to prepare early-stage/midcareer investigators and student trainees (trainees) in disparities reduction. This paper describes the academic, mentoring, training, and work-life balance experiences of CNPC-affiliated trainees. We used a collaborative and iterative process to develop a 57-item, web-based questionnaire completed by trainees from the 23 CNPCs between August 2012 and February 2013. Their CNPC mentors completed a 47-item questionnaire. Descriptive statistics were calculated. The final analytic sample included 189 of 269 individuals (70%) identified as active participants in CNPC research or training/mentoring. Mentors (n=45) were mostly non-Hispanic White (77.8%) and 48.9% were male. Mentors published a median of 6 (interquartile range [IQR], 3-12) first-authored and 15 (IQR, 6-25) senior authored manuscripts, and secured 15 (IQR, 11-29) grants from the National Institutes of Health (NIH) and other sources in the previous 5 years. Most trainees (n=144) were female (79.2%), 43.7% were underrepresented racial/ethnic minorities, and 36.8% were first-generation college graduates. Over the previous 5 years, trainees reported a median of 4 (IQR, 1-6) publications as first author and 4 (IQR, 2-8) as co-author; 27.1% reported having one or more NIH R01s. Trainees reported satisfaction with their CNPC mentor (79.1%) and confidence in demonstrating most CBPR competencies. The CNPC training program consists of a scientifically productive pool of mentors and trainees. Trainees reported rates of scholarly productivity comparable to other national training programs and provided insights into relationships with mentors, academic pressures, and professional-personal life balance.

  5. Mentoring and Training of Cancer-Related Health Disparities Researchers Committed to Community-Based Participatory Research

    Science.gov (United States)

    Felder, Tisha M.; Braun, Kathryn L.; Brandt, Heather M.; Khan, Samira; Tanjasiri, Sora; Friedman, Daniela B.; Armstead, Cheryl A.; Okuyemi, Kolawole S.; Hébert, James R.

    2015-01-01

    Background and Objective The National Cancer Institute’s (NCI) Community Networks Program Centers (CNPCs) provide community-based participatory research (CBPR)-oriented mentoring and training to prepare early-stage/midcareer investigators and student trainees (trainees) in disparities reduction. This paper describes the academic, mentoring, training, and work–life balance experiences of CNPC-affiliated trainees. Methods We used a collaborative and iterative process to develop a 57-item, web-based questionnaire completed by trainees from the 23 CNPCs between August 2012 and February 2013. Their CNPC mentors completed a 47-item questionnaire. Descriptive statistics were calculated. Results The final analytic sample included 189 of 269 individuals (70%) identified as active participants in CNPC research or training/mentoring. Mentors (n = 45) were mostly non-Hispanic White (77.8%) and 48.9% were male. Mentors published a median of 6 (interquartile range [IQR], 3–12) first-authored and 15 (IQR, 6–25) senior authored manuscripts, and secured 15 (IQR, 11–29) grants from the National Institutes of Health (NIH) and other sources in the previous 5 years. Most trainees (n = 144) were female (79.2%), 43.7% were underrepresented racial/ethnic minorities, and 36.8% were first-generation college graduates. Over the previous 5 years, trainees reported a median of 4 (IQR, 1–6) publications as first author and 4 (IQR, 2–8) as co-author; 27.1% reported having one or more NIH R01s. Trainees reported satisfaction with their CNPC mentor (79.1%) and confidence in demonstrating most CBPR competencies. Conclusion The CNPC training program consists of a scientifically productive pool of mentors and trainees. Trainees reported rates of scholarly productivity comparable to other national training programs and provided insights into relationships with mentors, academic pressures, and professional–personal life balance. PMID:26213409

  6. Process evaluation of two participatory approaches: Implementing total worker health® interventions in a correctional workforce.

    Science.gov (United States)

    Dugan, Alicia G; Farr, Dana A; Namazi, Sara; Henning, Robert A; Wallace, Kelly N; El Ghaziri, Mazen; Punnett, Laura; Dussetschleger, Jeffrey L; Cherniack, Martin G

    2016-10-01

    Correctional Officers (COs) have among the highest injury rates and poorest health of all the public safety occupations. The HITEC-2 (Health Improvement Through Employee Control-2) study uses Participatory Action Research (PAR) to design and implement interventions to improve health and safety of COs. HITEC-2 compared two different types of participatory program, a CO-only "Design Team" (DT) and "Kaizen Event Teams" (KET) of COs and supervisors, to determine differences in implementation process and outcomes. The Program Evaluation Rating Sheet (PERS) was developed to document and evaluate program implementation. Both programs yielded successful and unsuccessful interventions, dependent upon team-, facility-, organizational, state-, facilitator-, and intervention-level factors. PAR in corrections, and possibly other sectors, depends upon factors including participation, leadership, continuity and timing, resilience, and financial circumstances. The new PERS instrument may be useful in other sectors to assist in assessing intervention success. Am. J. Ind. Med. 59:897-918, 2016. © 2016 Wiley Periodicals, Inc. © 2016 Wiley Periodicals, Inc.

  7. Process Evaluation of Two Participatory Approaches: Implementing Total Worker Health® Interventions in a Correctional Workforce

    Science.gov (United States)

    Dugan, Alicia G.; Farr, Dana A.; Namazi, Sara; Henning, Robert A.; Wallace, Kelly N.; El Ghaziri, Mazen; Punnett, Laura; Dussetschleger, Jeffrey L.; Cherniack, Martin G.

    2018-01-01

    Background Correctional Officers (COs) have among the highest injury rates and poorest health of all the public safety occupations. The HITEC-2 (Health Improvement Through Employee Control-2) study uses Participatory Action Research (PAR) to design and implement interventions to improve health and safety of COs. Method HITEC-2 compared two different types of participatory program, a CO-only “Design Team” (DT) and “Kaizen Event Teams” (KET) of COs and supervisors, to determine differences in implementation process and outcomes. The Program Evaluation Rating Sheet (PERS) was developed to document and evaluate program implementation. Results Both programs yielded successful and unsuccessful interventions, dependent upon team-, facility-, organizational, state-, facilitator-, and intervention-level factors. Conclusions PAR in corrections, and possibly other sectors, depends upon factors including participation, leadership, continuity and timing, resilience, and financial circumstances. The new PERS instrument may be useful in other sectors to assist in assessing intervention success. PMID:27378470

  8. Community Empowerment for School Health: Action Research

    Directory of Open Access Journals (Sweden)

    Thomas Mathew

    2018-01-01

    Full Text Available Background: One of the authors living in Yelagiri Hills incidentally noticed that the one government school and two hostels there, were facing acute issues with performance and multiple student health issues. Hence the action research was undertaken to address the problem and simultaneously to empower the local community. Methods: It was a mixed-method action research study comprising of quantitative surveys (before- after design and qualitative approach (participatory intervention. At baseline survey 177 children in two residential hostels and one government school were examined using a locally adapted Global School based Student Health Survey questionnaire. The hemoglobin level was estimated using WHO hemoglobin color scale. The participatory interventions were carried out through School Health Committee. Periodic health checkup with hemoglobin levels and school performance were examined. After one year, 230 children were examined in the follow up survey using the same questionnaire. Results: There was significant improvement in the personal hygiene and reduction in related morbidity among the children. The number of students of hemoglobin level less than 12gm% decreased from 31.4% to 11.3%.The number of students of hemoglobin level more than or equal to 12gm% increased from 68.6% to 88.7%. There was significant decline in anemia from 31.4% from baseline to 11.3% at follow up survey. There was also significant decrease in the malnutrition. Conclusion: The need based participatory health promoting school initiative for tribal children at Yelagiri hills led to a significant improvement in the school performance and general health conditions of the children. The school health committee has played a vital role in the sustainability of the project. The action research could bring positive improvements in health status of school children through active participation of students, parents, teachers and community members.

  9. Engaging Adolescents Through Participatory and Qualitative Research Methods to Develop a Digital Communication Intervention to Reduce Adolescent Obesity.

    Science.gov (United States)

    Livingood, William C; Monticalvo, David; Bernhardt, Jay M; Wells, Kelli T; Harris, Todd; Kee, Kadra; Hayes, Johnathan; George, Donald; Woodhouse, Lynn D

    2017-08-01

    The complexity of the childhood obesity epidemic requires the application of community-based participatory research (CBPR) in a manner that can transcend multiple communities of stakeholders, including youth, the broader community, and the community of health care providers. To (a) describe participatory processes for engaging youth within context of CBPR and broader community, (b) share youth-engaged research findings related to the use of digital communication and implications for adolescent obesity intervention research, and (c) describe and discuss lessons learned from participatory approaches. CBPR principles and qualitative methods were synergistically applied in a predominantly African American part of the city that experiences major obesity-related issues. A Youth Research Advisory Board was developed to deeply engage youth in research that was integrated with other community-based efforts, including an academic-community partnership, a city-wide obesity coalition, and a primary care practice research network. Volunteers from the youth board were trained to apply qualitative methods, including facilitating focus group interviews and analyzing and interpreting data with the goal of informing a primary care provider-based obesity reduction intervention. The primary results of these efforts were the development of critical insights about adolescent use of digital communication and the potential importance of messaging, mobile and computer apps, gaming, wearable technology, and rapid changes in youth communication and use of digital technology in developing adolescent nutrition and physical activity health promotion. The youth led work helped identify key elements for a digital communication intervention that was sensitive and responsive to urban youth. Many valuable lessons were also learned from 3 years of partnerships and collaborations, providing important insights on applying CBPR with minority youth populations.

  10. Promoting group empowerment and self-reliance through participatory research: a case study of people with physical disability.

    Science.gov (United States)

    Stewart, R; Bhagwanjee, A

    1999-07-01

    Despite the growing popularity of the empowerment construct among social scientists, relatively few empowerment studies involving groupwork with people with physical disabilities exist. This article accordingly describes and analyses the organic development of the empowerment process within a spinal cord injury self-help group, set against the backdrop of policy imperatives for disability in post-apartheid South Africa. The treatise on the group empowerment process is located within the context of a group evaluation conducted within a participatory research framework. Key variables informing the research approach included: quality of participation, control over resources and decision-making, shift in critical consciousness and understanding, malleability of roles within the group and role of the health professional. Group members assumed ownership of group management and decision-making and shifted from a professionally-led to a peer-led self-help group. Group objectives changed from providing mutual support to community education and outreach activities. The role of the health professional shifted from group facilitator to invited consultant. This case study demonstrates how group participation, promoted by a critically informed therapeutic and research praxis, can unlock the inherent potential for self-reliance and empowerment of socially marginalized collectives. It offers important insights with regard to group process, participatory research and the role of the health professional in creating opportunities for empowerment and self-reliance of people with disability.

  11. Through Their Eyes: Lessons Learned Using Participatory Methods in Health Care Quality Improvement Projects.

    Science.gov (United States)

    Balbale, Salva N; Locatelli, Sara M; LaVela, Sherri L

    2016-08-01

    In this methodological article, we examine participatory methods in depth to demonstrate how these methods can be adopted for quality improvement (QI) projects in health care. We draw on existing literature and our QI initiatives in the Department of Veterans Affairs to discuss the application of photovoice and guided tours in QI efforts. We highlight lessons learned and several benefits of using participatory methods in this area. Using participatory methods, evaluators can engage patients, providers, and other stakeholders as partners to enhance care. Participant involvement helps yield actionable data that can be translated into improved care practices. Use of these methods also helps generate key insights to inform improvements that truly resonate with stakeholders. Using participatory methods is a valuable strategy to harness participant engagement and drive improvements that address individual needs. In applying these innovative methodologies, evaluators can transcend traditional approaches to uniquely support evaluations and improvements in health care. © The Author(s) 2015.

  12. Reconciling research and community priorities in participatory trials: application to Padres Informados/Jovenes Preparados.

    Science.gov (United States)

    Allen, Michele L; Garcia-Huidobro, Diego; Bastian, Tiana; Hurtado, G Ali; Linares, Roxana; Svetaz, María Veronica

    2017-06-01

    Participatory research (PR) trials aim to achieve the dual, and at times competing, demands of producing an intervention and research process that address community perspectives and priorities, while establishing intervention effectiveness. To identify research and community priorities that must be reconciled in the areas of collaborative processes, study design and aim and study implementation quality in order to successfully conduct a participatory trial. We describe how this reconciliation was approached in the smoking prevention participatory trial Padres Informados/Jovenes Preparados (Informed Parents/Prepared Youth) and evaluate the success of our reconciled priorities. Data sources to evaluate success of the reconciliations included a survey of all partners regarding collaborative group processes, intervention participant recruitment and attendance and surveys of enrolled study participants assessing intervention outcomes. While we successfully achieved our reconciled collaborative processes and implementation quality goals, we did not achieve our reconciled goals in study aim and design. Due in part to the randomized wait-list control group design chosen in the reconciliation process, we were not able to demonstrate overall efficacy of the intervention or offer timely services to families in need of support. Achieving the goals of participatory trials is challenging but may yield community and research benefits. Innovative research designs are needed to better support the complex goals of participatory trials. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  13. Learning through Participatory Action Research for Community Ecotourism Planning.

    Science.gov (United States)

    Guevara, Jose Roberto Q.

    1996-01-01

    Ecologically sound tourism planning and policy require an empowering community participation. The participatory action research model helps a community gain understanding of its social reality, learn how to learn, initiate dialog, and discover new possibilities for addressing its situation. (SK)

  14. Can Participatory Action Research Create Value for Business Model Innovation?

    DEFF Research Database (Denmark)

    Sparre, Mogens; Rasmussen, Ole Horn; Fast, Alf Michael

    Innovation (BMI)?” – has been investigated from five different perspectives based upon The Business Model Cube and The Where to Look Model. Using both established and newly developed tools the paper presents how. Theory and data from two cases are presented and it is demonstrated how industry increase......Abstract: Participatory Action Research (PAR) has a longer academic history compared with the idea of business models (BMs). This paper indicates how industries gain by using the combined methodology. The research question "Can participatory action research create value for Business Model...... their monetary and/or non-monetary value creation doing BMI based upon PAR. The process is essential and using the methodology of PAR creates meaning. Behind the process, the RAR methodology and its link to BM and BMI may contribute to theory construction and creation of a common language in academia around...

  15. The Preconception Stress and Resiliency Pathways Model: a multi-level framework on maternal, paternal, and child health disparities derived by community-based participatory research.

    Science.gov (United States)

    Ramey, Sharon Landesman; Schafer, Peter; DeClerque, Julia L; Lanzi, Robin G; Hobel, Calvin; Shalowitz, Madeleine; Chinchilli, Vern; Raju, Tonse N K

    2015-04-01

    Emerging evidence supports the theoretical and clinical importance of the preconception period in influencing pregnancy outcomes and child health. Collectively, this evidence affirms the need for a novel, integrative theoretical framework to design future investigations, integrate new findings, and identify promising, evidence-informed interventions to improve intergenerational health and reduce disparities. This article presents a transdisciplinary framework developed by the NIH Community Child Health Network (CCHN) through community-based participatory research processes. CCHN developed a Preconception Stress and Resiliency Pathways (PSRP) model by building local and multi-site community-academic participatory partnerships that established guidelines for research planning and decision-making; reviewed relevant findings diverse disciplinary and community perspectives; and identified the major themes of stress and resilience within the context of families and communities. The PSRP model focuses on inter-relating the multiple, complex, and dynamic biosocial influences theoretically linked to family health disparities. The PSRP model borrowed from and then added original constructs relating to developmental origins of lifelong health, epigenetics, and neighborhood and community influences on pregnancy outcome and family functioning (cf. MCHJ 2014). Novel elements include centrality of the preconception/inter-conception period, role of fathers and the parental relationship, maternal allostatic load (a composite biomarker index of cumulative wear-and-tear of stress), resilience resources of parents, and local neighborhood and community level influences (e.g., employment, housing, education, health care, and stability of basic necessities). CCHN's integrative framework embraces new ways of thinking about how to improve outcomes for future generations, by starting before conception, by including all family members, and by engaging the community vigorously at multiple

  16. Engaging the Deaf American Sign Language Community: Lessons From a Community-Based Participatory Research Center

    Science.gov (United States)

    McKee, Michael; Thew, Denise; Starr, Matthew; Kushalnagar, Poorna; Reid, John T.; Graybill, Patrick; Velasquez, Julia; Pearson, Thomas

    2013-01-01

    Background Numerous publications demonstrate the importance of community-based participatory research (CBPR) in community health research, but few target the Deaf community. The Deaf community is understudied and underrepresented in health research despite suspected health disparities and communication barriers. Objectives The goal of this paper is to share the lessons learned from the implementation of CBPR in an understudied community of Deaf American Sign Language (ASL) users in the greater Rochester, New York, area. Methods We review the process of CBPR in a Deaf ASL community and identify the lessons learned. Results Key CBPR lessons include the importance of engaging and educating the community about research, ensuring that research benefits the community, using peer-based recruitment strategies, and sustaining community partnerships. These lessons informed subsequent research activities. Conclusions This report focuses on the use of CBPR principles in a Deaf ASL population; lessons learned can be applied to research with other challenging-to-reach populations. PMID:22982845

  17. Determinants of Child Health Behaviors in a Disadvantaged Area from a Community Perspective: A Participatory Needs Assessment

    Directory of Open Access Journals (Sweden)

    Manou Anselma

    2018-03-01

    Full Text Available Children from disadvantaged areas are hard to reach for interventions aimed at promoting healthy lifestyles. We conducted a participatory needs assessment, in which researchers collaborated with a community in a disadvantaged area in Amsterdam to gain an understanding of the health-related issues of children within this community. Qualitative data was collected through: three to four participatory group meetings with three groups of 9–12-year-old children (n = 5–9 per group; nine interviews with professionals working with youth; two interviews with parents and their children; and informal meetings including 31 parents. All transcriptions or summaries were coded and analyzed. Childhood overweight/obesity was indicated as the main health issue. A lack of physical activity and unhealthy dietary behavior were identified as the main risk factors, with underlying determinants such as culture, habits, finances, and social norms. Identified needs included more supervised, low-priced sports activities at a nearby location and more education on adopting a healthy diet. Our participatory health needs assessment resulted in a comprehensive overview of the most relevant risk factors and determinants of childhood overweight/obesity and needs from the community’s perspective. This knowledge aids in the development of better tailored, and thereby potentially more effective, interventions.

  18. Building Capacity in Community-Based Participatory Research Partnerships Through a Focus on Process and Multiculturalism.

    Science.gov (United States)

    Corbie-Smith, Giselle; Bryant, Angela R; Walker, Deborah J; Blumenthal, Connie; Council, Barbara; Courtney, Dana; Adimora, Ada

    2015-01-01

    In health research, investigators and funders are emphasizing the importance of collaboration between communities and academic institutions to achieve health equity. Although the principles underlying community-academic partnered research have been well-articulated, the processes by which partnerships integrate these principles when working across cultural differences are not as well described. We present how Project GRACE (Growing, Reaching, Advocating for Change and Empowerment) integrated participatory research principles with the process of building individual and partnership capacity. We worked with Vigorous Interventions In Ongoing Natural Settings (VISIONS) Inc., a process consultant and training organization, to develop a capacity building model. We present the conceptual framework and multicultural process of change (MPOC) that was used to build individual and partnership capacity to address health disparities. The process and capacity building model provides a common language, approach, and toolset to understand differences and the dynamics of inequity. These tools can be used by other partnerships in the conduct of research to achieve health equity.

  19. Photography and Social Media Use in Community-Based Participatory Research with Youth: Ethical Considerations.

    Science.gov (United States)

    Kia-Keating, Maryam; Santacrose, Diana; Liu, Sabrina

    2017-12-01

    Community-based participatory researchers increasingly incorporate photography and social media into their work. Despite its relative infancy, social media has created a powerful network that allows individuals to convey messages quickly to a widespread audience. In addition to its potential benefits, the use of social media in research also carries risk, given the fast pace of exchanges, sharing of personal images and ideas in high accessibility, low privacy contexts and continually shifting options and upgrades. This article contributes to the literature examining ethical considerations for photography and social media use in community-based participatory research. We describe three key ethical dilemmas that we encountered during our participatory photography project with Latina/o youth: (a) use and content of images and risk; (b) incentives and coercion; and (c) social media activity and confidentiality. We provide our responses to these challenges, contextualized in theory and practice, and share lessons learned. We raise the question of how to contend with cultural shifts in boundaries and privacy. We propose that evaluating participant vulnerability versus potential empowerment may be more fitting than the standard approach of assessing risks and benefits. Finally, we recommend upholding the principles of participatory research by co-producing ethical practices with one's participants. © Society for Community Research and Action 2017.

  20. Being useful: achieving indigenous youth involvement in a community-based participatory research project in Alaska

    Directory of Open Access Journals (Sweden)

    Tara Ford

    2012-05-01

    Full Text Available Objectives. To report on a participatory research process in southwest Alaska focusing on youth involvement as a means to facilitate health promotion. We propose youth-guided community-based participatory research (CBPR as way to involve young people in health promotion and prevention strategizing as part of translational science practice at the community-level. Study design. We utilized a CBPR approach that allowed youth to contribute at all stages. Methods. Implementation of the CBPR approach involved the advancement of three key strategies including: (a the local steering committee made up of youth, tribal leaders, and elders, (b youth-researcher partnerships, and (c youth action-groups to translate findings. Results. The addition of a local youth-action and translation group to the CBPR process in the southwest Alaska site represents an innovative strategy for disseminating findings to youth from a research project that focuses on youth resilience and wellbeing. This strategy drew from two community-based action activities: (a being useful by helping elders and (b being proud of our village. Conclusions. In our study, youth informed the research process at every stage, but most significantly youth guided the translation and application of the research findings at the community level. Findings from the research project were translated by youth into serviceable action in the community where they live. The research created an experience for youth to spend time engaged in activities that, from their perspectives, are important and contribute to their wellbeing and healthy living. Youth-guided CBPR meant involving youth in the process of not only understanding the research process but living through it as well.

  1. Reflections on Researcher Identity and Power: The Impact of Positionality on Community Based Participatory Research (CBPR) Processes and Outcomes.

    Science.gov (United States)

    Muhammad, Michael; Wallerstein, Nina; Sussman, Andrew L; Avila, Magdalena; Belone, Lorenda; Duran, Bonnie

    2015-11-01

    The practice of community based participatory research (CBPR) has evolved over the past 20 years with the recognition that health equity is best achieved when academic researchers form collaborative partnerships with communities. This article theorizes the possibility that core principles of CBPR cannot be realistically applied unless unequal power relations are identified and addressed. It provides theoretical and empirical perspectives for understanding power, privilege, researcher identity and academic research team composition, and their effects on partnering processes and health disparity outcomes. The team's processes of conducting seven case studies of diverse partnerships in a national cross-site CBPR study are analyzed; the multi-disciplinary research team's self-reflections on identity and positionality are analyzed, privileging its combined racial, ethnic, and gendered life experiences, and integrating feminist and post-colonial theory into these reflections. Findings from the inquiry are shared, and incorporating academic researcher team identity is recommended as a core component of equalizing power distribution within CBPR.

  2. Community-based participatory research (CBPR) in South Africa: engaging multiple constituents to shape the research question.

    Science.gov (United States)

    Mosavel, Maghboeba; Simon, Christian; van Stade, Debbie; Buchbinder, Mara

    2005-12-01

    Community engagement is an on-going, arduous, and necessary process for developing effective health promotion programs. The challenges are amplified when the particular health issue or research question is not prominent in the consciousness of the targeted community. In this paper, we explore the community-based participatory research (CBPR) model as a means to negotiate a mutual agenda between communities and researchers. The paper is focused on the (perceived) need for cervical cancer screening in an under-resourced community in Cape Town, South Africa. Cervical cancer is a significant health problem in this community and elsewhere in South Africa. Unlike HIV-AIDS, however, many Black South Africans have not been educated about cervical cancer and the importance of obtaining screening. Many may not consider screening a priority in their lives. Our research included extensive consultations and informal interviews with diverse community and regional stakeholders. Following these, we conducted 27 focus groups and 106 demographic surveys with randomly selected youth, parents, local health care personnel, educators and school staff. Focus group data were summarized and analyzed cross-sectionally. Community stakeholders were involved throughout this research. Our consultations, interviews, and focus group data were key in identifying the concerns and priorities of the community. By engaging community stakeholders, we developed a research framework that incorporated the community's concerns and priorities, and stressed the intersecting roles of poverty, violence, and other cultural forces in shaping community members' health and wellbeing. Community members helped to refocus our research from cervical cancer to 'cervical health,' a concept that acknowledged the impact on women's bodies and lives of HIV-AIDS and STDs, sexual violence, poverty, and multiple social problems. We conclude that the research agenda and questions in community-based health research should not be

  3. Sustainability and power in health promotion: community-based participatory research in a reproductive health policy case study in New Mexico.

    Science.gov (United States)

    Mendes, Rosilda; Plaza, Veronica; Wallerstein, Nina

    2016-03-01

    Health promotion programs are commonly viewed as value-free initiatives which seek to improve health, often through behavior change. An opposing view has begun to emerge that health promotion efforts, especially ones seeking to impact health policy and social determinants of health, are vulnerable to political contexts and may depend on who is in power at the time. This community-based participatory research study attempts to understand these interactions by applying a conceptual model focused on the power context, diverse stakeholder roles within this context, and the relationship of political levers and other change strategies to the sustainability of health promotion interventions aimed at health policy change. We present a case study of a health promotion coalition, New Mexico for Responsible Sex Education (NMRSE), as an example of power dynamics and change processes. Formed in 2005 in response to federal policies mandating abstinence-only education, NMRSE includes community activists, health promotion staff from the New Mexico Department of Health, and policy-maker allies. Applying an adapted Mayer's 'power analysis' instrument, we conducted semi-structured stakeholder interviews and triangulated political-context analyses from the perspective of the stakeholders.We identified multiple understandings of sustainability and health promotion policy change, including: the importance of diverse stakeholders working together in coalition and social networks; their distinct positions of power within their political contexts; the role of science versus advocacy in change processes; the particular challenges for public sector health promotion professionals; and other facilitators versus barriers to action. One problem that emerged consisted of the challenges for state employees to engage in health promotion advocacy due to limitations imposed on their activities by state and federal policies. This investigation's results include a refined conceptual model, a power

  4. Pokémon Go: Ubiquitous Computing Delivering Better Health or Co-Incidental Health Benefits from Technology Use? A Participatory Observational Study.

    Science.gov (United States)

    Yee, Kwang Chien; Wong, Ming Chao; Turner, Paul

    2017-01-01

    Stimulating sustained behavioural change through information and technology has been an aim of much health informatics research. Traditional approaches use technology to mediate communications between health professionals and patients. More recent lifestyle technologies engage the patient directly with information and advice - but what of the phenomena that is Pokémon Go - does it point to another way of achieving health benefits through fun? This paper aims to explore some of the conceptual questions for health informatics stimulated by the phenomenal popularity of Pokémon Go. The paper is grounded analysis of data generated through a preliminary participatory observational study in Australia.

  5. Some considerations on the attractiveness of participatory processes for researchers from natural science

    Science.gov (United States)

    Barthel, Roland

    2013-04-01

    Participatory modeling and participatory scenario development have become an essential part of environmental impact assessment and planning in the field of water resources management. But even if most people agree that participation is required to solve environmental problems in a way that satisfies both the environmental and societal needs, success stories are relatively rare, while many attempts to include stakeholders in the development of models are still reported to have failed. This paper proposes the hypothesis, that the lack of success in participatory modeling can partly be attributed to a lack of attractiveness of participatory approaches for researchers from natural sciences (subsequently called 'modelers'). It has to be pointed out that this discussion is mainly concerned with natural scientists in academia and not with modelers who develop models for commercial purposes or modelers employed by public agencies. The involvement of modelers and stakeholders in participatory modeling has been intensively studied during recent years. However, such analysis is rarely made from the viewpoint of the modelers themselves. Modelers usually don't see participatory modeling and scenario development as scientific targets as such, because the theoretical foundations of such processes usually lie far outside their own area of expertise. Thus, participatory processes are seen mainly as a means to attract funding or to facilitate the access to data or (relatively rarely) as a way to develop a research model into a commercial product. The majority of modelers very likely do not spend too much time on reflecting whether or not their new tools are helpful to solve real world problems or if the results are understandable and acceptable for stakeholders. They consider their task completed when the model they developed satisfies the 'scientific requirements', which are essentially different from the requirements to satisfy a group of stakeholders. Funding often stops before a

  6. Effectiveness of participatory training on improving occupational health in small and medium enterprises in China.

    Science.gov (United States)

    Fu, Chuandong; Zhu, Meifeng; Yu, Tak Sun Ignatius; He, Yonghua

    2013-01-01

    Participatory training on occupational health is widely used in the world. Evaluations of local experiences are necessary to its successful performance. The project evaluated the effectiveness of participatory training on occupational health improvement in small and medium enterprises of China, and explored local practice experiences. Participatory training was provided to 525 welding workers from 25 small and medium enterprises in ship building and machinery manufacturing industries. This training consisted of interactive learning, worksite assessment and group discussion on laws/regulations, safety of machine operation, prevention of slips and trips, fire/explosion prevention, ergonomics, and recognition and prevention of other workplace hazards. Workers completed knowledge, attitude, and practice and worksite assessment questionnaires before and 3 months after intervention. Knowledge, attitude, and practice scores were significantly increased through the training. An inventory of workplace safety modifications was proposed by participants and many were fixed by workers and employers. Health management and personal protective equipment provision/use were most often improved, but improvements in engineering control and health-related accommodations remained unsatisfactory. Workers could recognize and fix workplace hazards after the participatory training. More efficient measures in China are to be explored to improve implementing solutions, especially on preventive engineering and human ergonomics.

  7. Using the critical incident technique in community-based participatory research: a case study.

    Science.gov (United States)

    Belkora, Jeffrey; Stupar, Lauren; O'Donnell, Sara

    2011-01-01

    Successful community-based participatory research involves the community partner in every step of the research process. The primary study for this paper took place in rural, Northern California. Collaborative partners included an academic researcher and two community based resource centers that provide supportive services to people diagnosed with cancer. This paper describes our use of the Critical Incident Technique (CIT) to conduct Community-based Participatory Research. We ask: Did the CIT facilitate or impede the active engagement of the community in all steps of the study process? We identified factors about the Critical Incident Technique that were either barriers or facilitators to involving the community partner in every step of the research process. Facilitators included the CIT's ability to accommodate involvement from a large spectrum of the community, its flexible design, and its personal approach. Barriers to community engagement included training required to conduct interviews, depth of interview probes, and time required. Overall, our academic-community partners felt that our use of the CIT facilitated community involvement in our Community-Based Participatory Research Project, where we used it to formally document the forces promoting and inhibiting successful achievement of community aims.

  8. Community–University Partnerships: Using Participatory Action Learning and Action Research (PALAR

    Directory of Open Access Journals (Sweden)

    Judith Kearney

    2013-09-01

    Full Text Available This article positions participatory action learning and action research (PALAR as a preferred methodology for community-university partnerships to achieve a holistic outcome that benefits the common interest. Evidence for this claim is illustrated through case studies of two community engagement programs, one in South Africa and the other in Australia. The South African study explains how relationships, reflection and recognition (the three R’s of PALAR are important elements that promote a truly participatory approach to knowledge creation and practical improvement in social circumstances. The Australian study then highlights what can be achieved. It does this by showing the potential for PALAR participants to learn how to design and implement a community engagement program, and how to cascade their own learning into their community to improve educational opportunities. Both studies demonstrate PALAR’s potential to disrupt traditional understandings of the research process, particularly in terms of researcher–participant relationships. At the same time, both studies identify the challenges arising from the theoretical and practical implications of PALAR as an approach to community development. This article is therefore significant for universities and funding organisations engaging in community-based research and development through partnerships, specifically in contexts of disadvantage. Keywords: Participatory action learning and action research, PALAR, community development, community engagement, community partnerships, disadvantaged communities, higher education.

  9. Uncovering the benefits of participatory research: implications of a realist review for health research and practice.

    Science.gov (United States)

    Jagosh, Justin; Macaulay, Ann C; Pluye, Pierre; Salsberg, Jon; Bush, Paula L; Henderson, Jim; Sirett, Erin; Wong, Geoff; Cargo, Margaret; Herbert, Carol P; Seifer, Sarena D; Green, Lawrence W; Greenhalgh, Trisha

    2012-06-01

    Participatory research (PR) is the co-construction of research through partnerships between researchers and people affected by and/or responsible for action on the issues under study. Evaluating the benefits of PR is challenging for a number of reasons: the research topics, methods, and study designs are heterogeneous; the extent of collaborative involvement may vary over the duration of a project and from one project to the next; and partnership activities may generate a complex array of both short- and long-term outcomes. Our review team consisted of a collaboration among researchers and decision makers in public health, research funding, ethics review, and community-engaged scholarship. We identified, selected, and appraised a large-variety sample of primary studies describing PR partnerships, and in each stage, two team members independently reviewed and coded the literature. We used key realist review concepts (middle-range theory, demi-regularity, and context-mechanism-outcome configurations [CMO]) to analyze and synthesize the data, using the PR partnership as the main unit of analysis. From 7,167 abstracts and 591 full-text papers, we distilled for synthesis a final sample of twenty-three PR partnerships described in 276 publications. The link between process and outcome in these partnerships was best explained using the middle-range theory of partnership synergy, which demonstrates how PR can (1) ensure culturally and logistically appropriate research, (2) enhance recruitment capacity, (3) generate professional capacity and competence in stakeholder groups, (4) result in productive conflicts followed by useful negotiation, (5) increase the quality of outputs and outcomes over time, (6) increase the sustainability of project goals beyond funded time frames and during gaps in external funding, and (7) create system changes and new unanticipated projects and activities. Negative examples illustrated why these outcomes were not a guaranteed product of PR

  10. Participatory design in Parkinson's research with focus on the symptomatic domains to be measured.

    Science.gov (United States)

    Serrano, J Artur; Larsen, Frank; Isaacs, Tom; Matthews, Helen; Duffen, Joy; Riggare, Sara; Capitanio, Fulvio; Ferreira, Joaquim J; Domingos, Josefa; Maetzler, Walter; Graessner, Holm

    2015-01-01

    There is a growing interest in the objective assessment of health related outcomes using technology providing quality measurements to be applied not only in daily clinical practice, but also in scientific research. Differences in the understandings of the condition and the terminology used between people with Parkinson's (PwPs), clinicians and technical developers may influence the progress of a participatory design process. This paper reports on a participatory design process to achieve a consensus among PwPs, clinicians and technologists over the selection of a set of symptomatic domains to be continuously assessed, in order to provide results relevant to both PwPs and clinicians. The methods used were a Web based user survey, end-user focus groups, ranking by combined methods, a Delphi process performed among clinicians and scientists, and prioritization of the results in a concertation workshop for PwPs, clinicians and technologists. The following symptomatic domains were commonly agreed by PwPs and clinicians to be of central importance in a system of continuous assessment: hypokinesia/bradykinesia, tremor, sway, gait, sleep and cognition. This list satisfied both the needs of the PwPs and the concerns of the clinicians regarding the means of advancing new strategies in assessment and interventions in PD. A participatory design strategy allowed the definition of a consensual list of symptomatic domains. Both the strategy and the achieved results may be of relevance for similar interdisciplinary approaches in the field of PD using a participatory design involving patients, clinicians and technologists.

  11. Improving community health through marketing exchanges: A participatory action research study on water, sanitation, and hygiene in three Melanesian countries.

    Science.gov (United States)

    Barrington, D J; Sridharan, S; Saunders, S G; Souter, R T; Bartram, J; Shields, K F; Meo, S; Kearton, A; Hughes, R K

    2016-12-01

    Diseases related to poor water, sanitation and hygiene (WaSH) are major causes of mortality and morbidity. While pursuing marketing approaches to WaSH to improve health outcomes is often narrowly associated with monetary exchange, marketing theory recognises four broad marketing exchange archetypes: market-based, non-market-based, command-based and culturally determined. This diversity reflects the need for parameters broader than monetary exchange when improving WaSH. This study applied a participatory action research process to investigate how impoverished communities in Melanesian urban and peri-urban informal settlements attempt to meet their WaSH needs through marketing exchange. Exchanges of all four archetypes were present, often in combination. Motivations for participating in the marketing exchanges were based on social relationships alongside WaSH needs, health aspirations and financial circumstances. By leveraging these motivations and pre-existing, self-determined marketing exchanges, WaSH practitioners may be able to foster WaSH marketing exchanges consistent with local context and capabilities, in turn improving community physical, mental and social health. Copyright © 2016 Elsevier Ltd. All rights reserved.

  12. Social Experiments and Participatory Research as Method

    DEFF Research Database (Denmark)

    Dirckinck-Holmfeld, Lone

    2007-01-01

    Interdisciplinary research with stakeholders and users challenge the research methodologies to be used. These have to provide a shared language for all the participants, to build up trust, and to offer insights into the diverse perspectives of the participants. Further more it challenge ways to d...... practice-based methods where "social experiments with technology" and "dialogue research" are the key-words. ...... to discuss and validate contributions from each others - across different criteria for each discipline, and crosswise different agendas for stakeholders, politicians, practitioners and researchers. Participatory research and social experiments are methodologies which have been developed to cope......Interdisciplinary research with stakeholders and users challenge the research methodologies to be used. These have to provide a shared language for all the participants, to build up trust, and to offer insights into the diverse perspectives of the participants. Further more it challenge ways...

  13. Participatory Action Research Experiences for Undergraduates

    Science.gov (United States)

    Sample McMeeking, L. B.; Weinberg, A. E.

    2013-12-01

    Research experiences for undergraduates (REU) have been shown to be effective in improving undergraduate students' personal/professional development, ability to synthesize knowledge, improvement in research skills, professional advancement, and career choice. Adding to the literature on REU programs, a new conceptual model situating REU within a context of participatory action research (PAR) is presented and compared with data from a PAR-based coastal climate research experience that took place in Summer 2012. The purpose of the interdisciplinary Participatory Action Research Experiences for Undergraduates (PAREU) model is to act as an additional year to traditional, lab-based REU where undergraduate science students, social science experts, and community members collaborate to develop research with the goal of enacting change. The benefits to traditional REU's are well established and include increased content knowledge, better research skills, changes in attitudes, and greater career awareness gained by students. Additional positive outcomes are expected from undergraduate researchers (UR) who participate in PAREU, including the ability to better communicate with non-scientists. With highly politicized aspects of science, such as climate change, this becomes especially important for future scientists. Further, they will be able to articulate the relevance of science research to society, which is an important skill, especially given the funding climate where agencies require broader impacts statements. Making science relevant may also benefit URs who wish to apply their science research. Finally, URs will gain social science research skills by apprenticing in a research project that includes science and social science research components, which enables them to participate in future education and outreach. The model also positively impacts community members by elevating their voices within and outside the community, particularly in areas severely underserved

  14. A participatory systems approach to design for safer integrated medicine management.

    Science.gov (United States)

    Jun, Gyuchan Thomas; Canham, Aneurin; Altuna-Palacios, Ander; Ward, James R; Bhamra, Ran; Rogers, Stephen; Dutt, Amalin; Shah, Priyal

    2018-01-01

    It is recognised that whole systems approaches are required in the design and development of complex health care services. Application of a systems approach benefits from the involvement of key stakeholders. However, participation in the context of community based health care is particularly challenging due to busy and geographically distributed stakeholders. This study used action research to investigate what processes and methods were needed to successfully employ a participatory systems approach. Three participatory workshops planned and facilitated by method experts were held with 30 representative stakeholders. Various methods were used with them and evaluated through an audit of workshop outputs and a qualitative questionnaire. Findings on the method application and participation are presented and methodological challenges are discussed with reference to further research. Practitioner Summary: This study provides practical insights on how to apply a participatory systems approach to complex health care service design. Various template-based methods for systems thinking and risk-based thinking were efficiently and effectively applied with stakeholders.

  15. Using participatory action research to develop an HIV and Aids ...

    African Journals Online (AJOL)

    this participatory action research (PAR) project (Ebersöhn & Ferreira, 2011; ..... giving them information on HIV and Aids” (focus group 2, teacher participant 7). .... under their care and to give them the best possible advice when necessary: “ ...

  16. Unintentional Power Plays: Interpersonal Contextual Impacts in Child-Centred Participatory Research

    Science.gov (United States)

    Gillett-Swan, Jenna K.; Sargeant, Jonathon

    2018-01-01

    Background: Approaches to conducting research with children afford them varying degrees of participatory power. Despite children's varying roles within research, more needs to be understood about the influences of unintentional power plays and, in particular, interactions between participant and non-participants on children's participation in…

  17. Challenges of youth participation in participatory action research

    DEFF Research Database (Denmark)

    Wattar, Laila; Fanous, Sandrine; Berliner, Peter

    2012-01-01

    Paamiut Youth Voice (PYV) is a Participatory Action Research (PAR) project, exploring youth perceptions, experiences, and the promotion of well-being in Paamiut, Greenland. Active youth participation remained a key challenge in the development of the local community through the locally initiated...... community mobilisation programme Paamiut Asasara. The challenges of youth participation in PYV are investigated in order to explore the implications of youth participation in PAR projects. The discussion of challenges is based on a methodological account of experiences from the research process clarifying...

  18. Participatory quantitative health impact assessment of urban and transport planning in cities: A review and research needs.

    Science.gov (United States)

    Nieuwenhuijsen, Mark J; Khreis, Haneen; Verlinghieri, Ersilia; Mueller, Natalie; Rojas-Rueda, David

    2017-06-01

    Urban and transport planning have large impacts on public health, but these are generally not explicitly considered and/or quantified, partly because there are no comprehensive models, methods and tools readily available. Air pollution, noise, temperature, green space, motor vehicle crashes and physical activity are important pathways linking urban and transport planning and public health. For policy decision-making, it is important to understand and be able to quantify the full-chain from source through pathways to health effects and impacts to substantiate and effectively target actions. In this paper, we aim to provide an overview of recent studies on the health impacts related to urban and transport planning in cities, describe the need for novel participatory quantitative health impact assessments (HIA) and provide recommendations. To devise our searches and narrative, we were guided by a recent conceptual framework linking urban and transport planning, environmental exposures, behaviour and health. We searched PubMed, Web of Science, Science Direct, and references from relevant articles in English language from January 1, 1980, to November 1, 2016, using pre-defined search terms. The number of HIA studies is increasing rapidly, but there is lack of participatory integrated and full-chain HIA models, methods and tools. These should be based on the use of a systemic multidisciplinary/multisectorial approach and state-of-the-art methods to address questions such as what are the best, most feasible and needed urban and transport planning policy measures to improve public health in cities? Active citizen support and new forms of communication between experts and citizens and the involvement of all major stakeholders are crucial to find and successfully implement health promoting policy measures. We provided an overview of the current state-of-the art of HIA in cities and made recommendations for further work. The process on how to get there is as important and

  19. Ethics and Community-Based Participatory Research: Perspectives From the Field

    OpenAIRE

    Bastida, Elena M.; Tseng, Tung-Sung; McKeever, Corliss; Jack, Leonard

    2010-01-01

    Exploring the importance of ethical issues in the conduct of community-based participatory research (CBPR) continues to be an important topic for researchers and practitioners. This article uses the Beyond Sabor Project, a CBPR project implemented in the Lower Rio Grande Valley, as a case example to discuss ethical issues such as the importance of increasing community involvement in research, ensuring that communities benefit from the research, sharing leadership roles, and sensitive issues r...

  20. Hearing Voices: Participatory Research with Preschool Children with and without Disabilities

    Science.gov (United States)

    Gray, Colette; Winter, Eileen

    2011-01-01

    The present study seeks to extend current thinking on participatory research by actively engaging 36 young children with and without a known disability in all aspects of a research project. Matched according to age and gender, six dyads of children attending four early years settings in Northern Ireland chose the research question, selected the…

  1. The Use of Participatory Action Research within Education--Benefits to Stakeholders

    Science.gov (United States)

    Jacobs, Steven

    2016-01-01

    This paper offers a brief history and the characteristics of the research methodology known as Participatory Action Research (PAR). This paper also states how PAR can be utilized within an educational environment and describes the benefits to all stakeholders such as teachers and students when they are involved in a research project using PAR as…

  2. Engagement strategies that foster community self-determination in participatory research: Insider ownership through outsider championship.

    Science.gov (United States)

    Salsberg, Jon; Macridis, Soultana; Garcia Bengoechea, Enrique; Macaulay, Ann C; Moore, Spencer

    2017-06-01

    In order to maximize the benefits of community-based participatory research, effective ownership over the research process must be at least equally in the hands of the community. A previous social network analysis documented that the participatory research process shifted ownership from academic to community partners, but did not show what actions and strategies fostered this shift. This study follows the trajectory of a community-academic partnership and asks, from the perspective of the project stakeholders, which actions and strategies over the lifespan of the research led to the observed shift in ownership and decision-making from the original external academics to the community stakeholders? Qualitative description using inductive thematic analysis. One academic and five community stakeholders identified as central in a previous social network analysis, participated in retrospective, semi-structured interviews. Actions deemed to have fostered the observed shift in ownership included: existence of a strong champion; stimulating 'outside' ideas; emergence of core people; alignment of project goals with stakeholders' professional roles; involving the right people; personal qualities of the champion; trust-building; and active use of participatory engagement strategies. Although communities must take ownership over the research process to assure sustained action and change, a strong, trusted and accepted outside champion who actively enacts participatory engagement strategies can facilitate the participatory process and provide community stakeholders the time and support they need to achieve meaningful and sustained leadership roles. These findings have implications for how partnership research is designed and implemented, both in community and in clinical organisational settings. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  3. The technique of participatory research in community development.

    Science.gov (United States)

    Anyanwu, C N

    1988-01-01

    The technique of participatory research in community development is based on the involvement of the beneficiaries of the research in the entire research process, including the formulation of the research design, the collection of data, interpretation of information collected, and the analysis of findings. Thus, research teams utilizing this approach are composed of villagers, farmers, unemployed people, local leaders, and educators. The research process thus offers an educational experience that helps to identify community needs and motivate community members to become committed to the solution of their own problems. Moreover, this approach challenges the prevalent notion that only professional researchers can generate knowledge for meaningful social reform. A participatory research technique, based on the concept of citizen enlightenment for community development, was adopted by the Department of Adult Education at the University of Ibadan in a study of rural poverty in Oyo State's Apasan villages. The research team, comprised of local leaders, peasant farmers, teachers, local students, and university students, identified the villages' isolation and food scarcity as major causes of poverty. 2 actions were taken in response to these findings: 1) the construction of a road linking the Apasan communities with the State capital, enabling villagers to travel to the town, sell their goods, and purchase needed items; and 2) formation of a primary cooperative society for multipurpose farming. These actions have solved the food problem, improved the villagers' earning capacity, and resulted in the return of numerous villagers who had migrated to towns to find wage employment. Because the villagers were directly involved in the study of their problems, they were able to become more aware of their social reality and make the changes needed to lift them out of poverty.

  4. Overcoming diabetes-related stigma in Iran: A participatory action research.

    Science.gov (United States)

    Doosti-Irani, Mehri; Abdoli, Samereh; Parvizy, Soroor; Fatemi, Naimeh Seyed

    2017-08-01

    The study aimed to overcome diabetes-related stigma in individuals living with type 1 Diabetes Mellitus (T1DM) in Iran. The study proposed that if individuals with T1DM and the community work together to develop and implement an anti-stigma program, diabetes-related stigma in individuals with T1DM can be reduced. This study was conducted as a participatory action research study based on Kemmis and McTaggert's (2000) Model to design and implement an anti-stigma program for T1DM. Participants were selected among individuals with T1DM, their family members, health care providers, and residents without diabetes in Isfahan, Iran. Data collection was conducted using interviews, focus groups, emails, and text messages. Content analysis was used to analyze the data to develop anti-stigma interventions. Interventions were prioritized based on the Suitability, Feasibility and Flexibility (SFF) Matrix. Anti-stigma interventions were implemented in different levels in Isfahan, Iran, from 2011 to 2014. The effect of the program was evaluated based on interviews, feedback, and focus groups at the individual level. However, interventions were implemented in different levels including community, organization, family, and individual. Participants with T1DM experienced significant empowerment during the project to overcome diabetes-related stigma. The three main themes indicating this feeling of empowerment are "from doubt to trust", "from shadow to light", and "from me to us". Participatory action research can be an effective way to reduce diabetes-related stigma in individuals living with T1DM. It integrates the voices of the marginalized group reducing stigma and discrimination against diabetes. Copyright © 2017. Published by Elsevier Inc.

  5. Agroecology and sustainable food systems: Participatory research to improve food security among HIV-affected households in northern Malawi.

    Science.gov (United States)

    Nyantakyi-Frimpong, Hanson; Mambulu, Faith Nankasa; Bezner Kerr, Rachel; Luginaah, Isaac; Lupafya, Esther

    2016-09-01

    This article shares results from a long-term participatory agroecological research project in northern Malawi. Drawing upon a political ecology of health conceptual framework, the paper explores whether and how participatory agroecological farming can improve food security and nutrition among HIV-affected households. In-depth interviews were conducted with 27 farmers in HIV-affected households in the area near Ekwendeni Trading Centre in northern Malawi. The results show that participatory agroecological farming has a strong potential to meet the food, dietary, labour and income needs of HIV-affected households, whilst helping them to manage natural resources sustainably. As well, the findings reveal that place-based politics, especially gendered power imbalances, are imperative for understanding the human impacts of the HIV/AIDS epidemic. Overall, the study adds valuable insights into the literature on the human-environment dimensions of health. It demonstrates that the onset of disease can radically transform the social relations governing access to and control over resources (e.g., land, labour, and capital), and that these altered social relations in turn affect sustainable disease management. The conclusion highlights how the promotion of sustainable agroecology could help to partly address the socio-ecological challenges associated with HIV/AIDS. Copyright © 2016 Elsevier Ltd. All rights reserved.

  6. Ethical challenges and opportunities for nurses in HIV and AIDS community-based participatory research in Jamaica.

    Science.gov (United States)

    Davison, Colleen M; Kahwa, Eulalia; Atkinson, Uki; Hepburn-Brown, Cerese; Aiken, Joyette; Dawkins, Pauline; Rae, Tania; Edwards, Nancy; Roelofs, Susan; MacFarlane, Denise

    2013-02-01

    As part of a multinational program of research, we undertook a community-based participatory research project in Jamaica to strengthen nurses' engagement in HIV and AIDS policy. Three leadership hubs were purposefully convened and included small groups of people (6-10) from diverse HIV and AIDS stakeholder groups in Jamaica: frontline nurses and nurse managers in primary and secondary care settings; researchers; health care decision makers; and other community members. People living with HIV or AIDS were among the hub members. Using a relational public health ethics framework, we outline some of the ethical challenges and opportunities experienced by the research team and the leadership hubs. Data included research assistant field notes and hub progress reports. Emerging ethical concerns were associated with relational personhood, social justice, relational autonomy, relational solidarity, and sustainability of the hub activities.

  7. Academics and Advocates: Using Participatory Action Research To Influence Welfare Policy.

    Science.gov (United States)

    Quoss, Bernita; Cooney, Margaret; Longhurst, Terri

    2000-01-01

    Participatory action research is a useful technique for helping low income groups access postsecondary education. Conducting research involving analysis of the use of surplus welfare funds and federal regulations and advocating policy changes by explaining the benefits of public investment in postsecondary education are two roles for consumer…

  8. Finding ergonomic solutions--participatory approaches.

    Science.gov (United States)

    Hignett, Sue; Wilson, John R; Morris, Wendy

    2005-05-01

    This paper gives an overview of the theory of participatory ergonomics interventions and summary examples from a range of industries, including health care, military, manufacturing, production and processing, services, construction and transport. The definition of participatory approaches includes interventions at macro (organizational, systems) levels as well as micro (individual), where workers are given the opportunity and power to use their knowledge to address ergonomic problems relating to their own working activities. Examples are given where a cost-effective benefit has been measured using musculoskeletal sickness absence and compensation costs. Other examples, using different outcome measures, also showed improvements, for example, an increase in productivity, improved communication between staff and management, reduction in risk factors, the development of new processes and new designs for work environments and activities. Three cases are described from Canada and Japan where the participatory project was led by occupational health teams, suggesting that occupational health practitioners can have an important role to play in participatory ergonomics projects.

  9. Lessons from the Labor Organizing Community and Health Project: Meeting the Challenges of Student Engagement in Community Based Participatory Research

    Science.gov (United States)

    Allison, Juliann Emmons; Khan, Tabassum; Reese, Ellen; Dobias, Becca Spence; Struna, Jason

    2015-01-01

    Community Based Participatory Research (CBPR) provides opportunities for scholars and students to respond directly to community needs; students also practice critical thinking, problem-solving, and conflict-resolution skills necessary for professional life and engaged citizenship. The challenges of involving undergraduate students in CBPR include…

  10. Social media for health promotion in diabetes: study protocol for a participatory public health intervention design.

    Science.gov (United States)

    Gabarron, E; Bradway, M; Fernandez-Luque, L; Chomutare, T; Hansen, A H; Wynn, R; Årsand, E

    2018-06-05

    Participatory health approaches are increasingly drawing attention among the scientific community, and could be used for health promotion programmes on diabetes through social media. The main aim of this project is to research how to best use social media to promote healthy lifestyles with and within the Norwegian population. The design of the health promotion intervention (HPI) will be participatory, and will involve both a panel of healthcare experts and social media users following the Norwegian Diabetes Association. The panel of experts will agree on the contents by following the Delphi method, and social media users will participate in the definition of the HPI by expressing their opinions through an adhoc online questionnaire. The agreed contents between both parties to be used in the HPI will be posted on three social media channels (Facebook, Twitter and Instagram) along 24 months. The 3 months before starting the HPI, and the 3 months after the HPI will be used as control data. The effect of the HPI will be assessed by comparing formats, frequency, and reactions to the published HPI messages, as well as comparing potential changes in five support-intended communication behaviours expressed on social media, and variations in sentiment analysis before vs during and after the HPI. The HPI's effect on social media users' health-related lifestyles, online health behaviours, and satisfaction with the intervention will be assessed every 6 months through online questionnaires. A separate questionnaire will be used to assess the panel of experts' satisfaction and perceptions of the benefits for health professionals of a HPI as this one. The time constraints of today's medical practice combined with the piling demand of chronic conditions such as diabetes make any additional request of extra time used by health care professionals a challenge. Social media channels provide efficient, ubiquitous and user-friendly platforms that can encourage participation

  11. Design Anthropology in Participatory Design

    DEFF Research Database (Denmark)

    Smith, Rachel Charlotte; Kjærsgaard, Mette Gislev

    2015-01-01

    This focus section explores the opportunities of design anthropology in participatory design as an approach to research and design in an increasingly global and digital world. Traditionally, ethnography has been used in Participatory design to research real-life contexts and challenges, and as ways...... opportunities of using design anthropology as a holistic and critical approach to addressing societal challenges and change, and a way for anthropologists and designers to engage in participatory research and design that extend beyond the empirical....

  12. Participatory Action Research in Marginalised Communities : safe drinking water in rural Bangladesh

    NARCIS (Netherlands)

    Rammelt, Crelis

    This paper provides an example of an application of participatory action research (PAR) to the current crisis of arsenic poisoning in rural Bangladesh. The approach was used to link the author’s doctoral research with the work of the Arsenic Mitigation and Research Foundation (AMRF), a small group

  13. Multidisciplinary and participatory workshops with stakeholders in a community of extreme poverty in the Peruvian Amazon: development of priority concerns and potential health, nutrition and education interventions.

    Science.gov (United States)

    Casapia, Martin; Joseph, Serene A; Gyorkos, Theresa W

    2007-07-10

    Communities of extreme poverty suffer disproportionately from a wide range of adverse outcomes, but are often neglected or underserved by organized services and research attention. In order to target the first Millennium Development Goal of eradicating extreme poverty, thereby reducing health inequalities, participatory research in these communities is needed. Therefore, the purpose of this study was to determine the priority problems and respective potential cost-effective interventions in Belen, a community of extreme poverty in the Peruvian Amazon, using a multidisciplinary and participatory focus. Two multidisciplinary and participatory workshops were conducted with important stakeholders from government, non-government and community organizations, national institutes and academic institutions. In Workshop 1, participants prioritized the main health and health-related problems in the community of Belen. Problem trees were developed to show perceived causes and effects for the top six problems. In Workshop 2, following presentations describing data from recently completed field research in school and household populations of Belen, participants listed potential interventions for the priority problems, including associated barriers, enabling factors, costs and benefits. The top ten priority problems in Belen were identified as: 1) infant malnutrition; 2) adolescent pregnancy; 3) diarrhoea; 4) anaemia; 5) parasites; 6) lack of basic sanitation; 7) low level of education; 8) sexually transmitted diseases; 9) domestic violence; and 10) delayed school entry. Causes and effects for the top six problems, proposed interventions, and factors relating to the implementation of interventions were multidisciplinary in nature and included health, nutrition, education, social and environmental issues. The two workshops provided valuable insight into the main health and health-related problems facing the community of Belen. The participatory focus of the workshops ensured the

  14. Troubling Futures: Can Participatory Design Research provide a Constitutive Anthropology for the 21st Century?

    Directory of Open Access Journals (Sweden)

    Ann Light

    2015-10-01

    Full Text Available This paper argues there is value in considering participatory design as a form of anthropology at a time when we recognise that we need not only to understand cultures but to change them towards sustainable living. Holding up the democratically-oriented practices of some participatory design research to definitions of anthropology allows the essay to explore the role of intervention in social process. And, challenging definitional boundaries, it examines design as a participatory tool for cultural change, creating and interrogating futures (and the idea of futures. In analysing how designing moves towards change in the world, the paper brings together design research and anthropological concepts to help us better understand and operationalise our interventions and pursue them in a fair and sustainable manner.

  15. Children's perspectives on cyberbullying: insights based on participatory research.

    Science.gov (United States)

    Baas, Niels; de Jong, Menno D T; Drossaert, Constance H C

    2013-04-01

    Cyberbullying is an emerging problem among youngsters. Although the current body of knowledge about cyberbullying is expanding rapidly, it lacks a more in-depth research approach honoring adolescents' perspectives on the problem. Moreover, very few studies have focused on cyberbullying among elementary school children. The purpose of this study therefore, was to explore children's perspectives on the problem of cyberbullying. A participatory research design was used in which 28 children (aged 11-12 from four elementary schools) actively participated for 6 weeks in weekly scheduled group sessions. In these sessions, different aspects of cyberbullying were discussed using various enabling techniques. Between sessions, the children were given preparation assignments. The research revealed several ambiguities that should be addressed in interventions against cyberbullying. First, it appears difficult for all parties involved to distinguish cyberbullying from innocent pranks. Frequency and intention are key variables, but these are ambiguous in the context of cyberbullying. Second, cyberbullies may have very different motives, not all of which have to do with their relationship with the victim. Third, the expectations children have of the way their parents or teachers will react to incidents of cyberbullying are an obstacle for seeking help. Children are particularly afraid of overreaction and the subsequent loss of their Internet privileges. These results confirm earlier insights from research on cyberbullying, and examine the ambiguities in more detail. In addition, the research demonstrates the usefulness of participatory research to investigate cyberbullying among younger children and demonstrates that the research led to mutual learning.

  16. Participatory Research for Adaptive Water Management in a Transition Country - a Case Study from Uzbekistan

    Directory of Open Access Journals (Sweden)

    Darya Hirsch

    2010-09-01

    Full Text Available Participatory research has in recent years become a popular approach for problem-oriented scientific research that aims to tackle complex problems in a real management context. Within the European Union project NeWater, stakeholder processes were initiated in seven case studies to develop approaches for adaptive water management. The Uzbek part of the Amudarya River basin was one of the studied river basins. However, given the current political and cultural context in Uzbekistan, which provides little room for stakeholder participation, it was unclear to what extent participation could be realized there. In this paper, we present an evaluation of the participatory research carried out in the Amudarya case study with respect to (i the choice and application of different participatory methods and their adaptation to the given political, socioeconomic, and cultural environment, (ii their usefulness in improving system understanding and developing strategies and measures to improve water management and monitoring, and (iii their acceptance and suitability for enhancing policy-making processes in the Amudarya River basin context. The main lessons learned from the comparison of the different participatory methods were (1 the stakeholder process provided an opportunity for meetings and discussions among stakeholders from different organizational levels and thus promoted communication between different levels and organizations, and (2 in a context where most stakeholders are not generally involved in policy-making, there is a danger of raising expectations that a research project cannot meet, e.g., of transferring local interests to higher levels. Our experience shows that in order to choose participatory methods and adapt them to the Uzbek cultural and political setting (and most likely this applies to other post-Soviet transition countries as well, four aspects should be taken into account: the time required to prepare and apply the method, good

  17. Perspectives on past and Present Waste Disposal Practices: A community-Based Participatory Research Project in Three Saskatchewan First Nations Communities

    OpenAIRE

    Rebecca Zagozewski; Ian Judd-Henrey; Suzie Nilson; Lalita Bharadwaj

    2011-01-01

    The impact of current and historical waste disposal practices on the environment and human health of Indigenous people in First Nations communities has yet to be adequately addressed. Solid waste disposal has been identified as a major environmental threat to First Nations Communities. A community-based participatory research project (CBPR) was initiated by the Saskatoon Tribal Council Health and Family Services Incorporated to investigate concerns related to waste disposal in three Saskatche...

  18. Perspectives on Past and Present Waste Disposal Practices: A Community-Based Participatory Research Project in Three Saskatchewan First Nations Communities

    OpenAIRE

    Rebecca Zagozewski; Ian Judd-Henrey; Suzie Nilson; Lalita Bharadwaj

    2011-01-01

    The impact of current and historical waste disposal practices on the environment and human health of Indigenous people in First Nations communities has yet to be adequately addressed. Solid waste disposal has been identified as a major environmental threat to First Nations Communities. A community-based participatory research project (CBPR) was initiated by the Saskatoon Tribal Council Health and Family Services Incorporated to investigate concerns related to waste disposal in three Saskatche...

  19. A Signature Pedagogy for Leadership Education: Preparing Principals through Participatory Action Research

    Science.gov (United States)

    Sappington, Neil; Baker, Paul J.; Gardner, Dianne; Pacha, Joe

    2010-01-01

    This study proposes participatory action research as a signature pedagogy for principal preparation programs. Signature pedagogies bring professional knowledge and core values together in distinctive teaching and learning arrangements. A rationale and learning results are presented that describe key components of action research intended to help…

  20. Participatory Budgeting: Could It Diminish Health Disparities in the United States?

    Science.gov (United States)

    Hagelskamp, Carolin; Schleifer, David; Rinehart, Chloe; Silliman, Rebecca

    2018-05-07

    , technical assistance providers, and many elected officials who have adopted it emphasize that PB must focus on engaging underrepresented and marginalized communities [2, 4, 5]. PB steering committees have specified equity and inclusiveness goals in PB rule books [6, 7]. The most conclusive research so far on PB's potential to reduce social inequalities, however, comes from Brazil, where PB started in 1989. In Brazil, PB has been associated with a reduction in extreme poverty, better access to public services, greater spending on sanitation and health services, and, most notably, a reduction in child and infant mortality [8, 9].In this paper, we outline three mechanisms by which PB could affect health disparities in US municipalities: First, by strengthening residents' psychological empowerment; second, by strengthening civic sector alliances; and third, by (re)distributing resources to areas of greatest need. We summarize the theoretical argument for these impacts, discuss the existent empirical evidence, and highlight promising avenues for further research.

  1. Using Digital Participatory Research to Foster Glocal Competence: Constructing Multimedia Projects as a Form of Global and Civic Citizenship

    Science.gov (United States)

    Mathews, Sarah A.

    2016-01-01

    Digital Participatory Research (DPR) combines grass-roots participatory research and photojournalism, asks students to investigate assets and issues within their community, and facilitates civic participation by using problem-posing and praxis-orientated methods. Although there is a vast amount of research documenting the impact of DPR at the…

  2. Developing and Conducting a Dissertation Study through the Community-Based Participatory Research Approach.

    Science.gov (United States)

    Nadimpalli, S B; Van Devanter, N; Kavathe, R; Islam, N

    2016-06-01

    The community-based participatory research (CBPR) approach has been shown to be innovative and effective in conducting research with communities experiencing health disparities. Doctoral nursing students, and other doctoral students in the health sciences, who are interested in this approach can benefit through structured CBPR training experiences in learning how to engage with communities, build community capacity, share resources, implement CBPR study plans, and disseminate results of CBPR-focused studies. The objectives of this case-study are to demonstrate ways in which one doctoral student aligned with academic mentors and a funded CBPR project to build a relationship with the Sikh Asian Indian (AI) community of New York City to develop and implement a CBPR-focused doctoral dissertation study. The purpose of the research was to examine the relationship between the experience of perceived discrimination and health outcomes in this community. CBPR methods utilized in developing the study entailed the author partaking in formal and informal CBPR learning experiences, building relationships with community and academic partners early on through volunteering, developing a research plan in collaboration with members of the community and academic partners, identifying an appropriate setting and methods for recruitment and data collection, increasing capacity and resources for all partners (the author, community, and academic), and presenting dissertation study findings to the community. In conclusion, CBPR-focused doctoral experiences are novel pedagogical and professional approaches for nursing and health science students which can lead to mutual benefits for all involved, and ultimately successful and effective community-based health research.

  3. Using participatory methods to design an mHealth intervention for a low income country, a case study in Chikwawa, Malawi.

    Science.gov (United States)

    Laidlaw, Rebecca; Dixon, Diane; Morse, Tracy; Beattie, Tara K; Kumwenda, Save; Mpemberera, Grant

    2017-07-05

    mHealth holds the potential to educate rural communities in developing countries such as Malawi, on issues which over-burdened and under staffed health centres do not have the facilities to address. Previous research provides support that mHealth could be used as a vehicle for health education campaigns at a community level; however the limited involvement of potential service users in the research process endangers both user engagement and intervention effectiveness. This two stage qualitative study used participatory action research to inform the design and development of an mHealth education intervention. First, secondary analysis of 108 focus groups (representing men, women, leadership, elderly and male and female youth) identified four topics where there was a perceived health education need. Second, 10 subsequent focus groups explored details of this perceived need and the acceptability and feasibility of mHealth implementation in Chikwawa, Malawi. Stage 1 and Stage 2 informed the design of the intervention in terms of target population, intervention content, intervention delivery and the frequency and timing of the intervention. This has led to the design of an SMS intervention targeting adolescents with contraceptive education which they will receive three times per week at 4 pm and will be piloted in the next phase of this research. This study has used participatory methods to identify a need for contraception education in adolescents and inform intervention design. The focus group discussions informed practical considerations for intervention delivery, which has been significantly influenced by the high proportion of users who share mobile devices and the intervention has been designed to allow for message sharing as much as possible.

  4. Turning Participatory Microbiome Research into Usable Data: Lessons from the American Gut Project.

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    Debelius, Justine W; Vázquez-Baeza, Yoshiki; McDonald, Daniel; Xu, Zhenjiang; Wolfe, Elaine; Knight, Rob

    2016-03-01

    The role of the human microbiome is the subject of continued investigation resulting in increased understanding. However, current microbiome research has only scratched the surface of the variety of healthy microbiomes. Public participation in science through crowdsourcing and crowdfunding microbiome research provides a novel opportunity for both participants and investigators. However, turning participatory science into publishable data can be challenging. Clear communication with the participant base and among researchers can ameliorate some challenges. Three major aspects need to be considered: recruitment and ongoing interaction, sample collection, and data analysis. Usable data can be maximized through diligent participant interaction, careful survey design, and maintaining an open source pipeline. While participatory science will complement rather than replace traditional avenues, it presents new opportunities for studies in the microbiome and beyond.

  5. Turning Participatory Microbiome Research into Usable Data: Lessons from the American Gut Project

    Directory of Open Access Journals (Sweden)

    Justine W. Debelius

    2015-10-01

    Full Text Available The role of the human microbiome is the subject of continued investigation resulting in increased understanding. However, current microbiome research has only scratched the surface of the variety of healthy microbiomes. Public participation in science through crowdsourcing and crowdfunding microbiome research provides a novel opportunity for both participants and investigators. However, turning participatory science into publishable data can be challenging. Clear communication with the participant base and among researchers can ameliorate some challenges. Three major aspects need to be considered: recruitment and ongoing interaction, sample collection, and data analysis. Usable data can be maximized through diligent participant interaction, careful survey design, and maintaining an open source pipeline. While participatory science will complement rather than replace traditional avenues, it presents new opportunities for studies in the microbiome and beyond.

  6. Participatory Research Into Inclusive Practice: Improving Services for People With Long Term Neurological Conditions

    Directory of Open Access Journals (Sweden)

    Tina Cook

    2017-11-01

    Full Text Available People with long-term conditions are intensive users of health services as well as being long term users of social care and community services. In the UK, the Department of Health has suggested that the development of a more inclusive approach to services could furnish benefits to people with long-term conditions and financial savings for service providers. Researchers with a varied set of expertise and experience (users of neuro-rehabilitation services, staff working in services, people working with third sector agencies and university academics adopted a participatory research approach to work together to explore what inclusion might look and feel like for people who are long term users of health services. The element of critique and mutual challenge, developed within the research process, disturbed current presentations of inclusion and inclusive practice. It revealed that the more usually expected components of inclusion (trust, respect and shared responsibility whilst necessary for inclusive practice, are not necessarily sufficient. Inclusion is revealed as a complex and challenging process that requires the active construction of a critical communicative space for dialectical and democratic learning for service development.

  7. Roles of Participatory Action-oriented Programs in Promoting Safety and Health at Work

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    Kogi Kazutaka

    2012-09-01

    Full Text Available Reflecting the current international trends toward proactive risk assessment and control at work with practical procedures, participatory action-oriented approaches are gaining importance in various sectors. The roles of these approaches in promoting the safety and health at work are discussed based on their recent experiences in preventing work-related risks and improving the quality of work life, particularly in small-scale workplaces. The emphasis placed on the primary prevention at the initiative of workers and managers is commonly notable. Participatory steps, built on local good practices, can lead to many workplace improvements when the focus is on locally feasible low-cost options in multiple aspects. The design and use of locally adjusted action toolkits play a key role in facilitating these improvements in each local situation. The effectiveness of participatory approaches relying on these toolkits is demonstrated by their spread to many sectors and by various intervention studies. In the local context, networks of trainers are essential in sustaining the improvement activities. With the adequate support of networks of trainers trained in the use of these toolkits, participatory approaches will continue to be the key factor for proactive risk management in various work settings.

  8. INTERNALISASI NILAI KERJASAMA PADA KULIAH KERJA MAHASISWA BERBASIS PARTICIPATORY ACTION RESEARCH SEBAGAI UPAYA MEWUJUDKAN KEPEDULIAN SOSIAL

    Directory of Open Access Journals (Sweden)

    Deden Sudirman

    2018-02-01

    Full Text Available This research evelop teamwork internalization model through internship which is based on Participatory Action Research. Participants are students at IAIN Syekh Nurjati Cirebon involved in qualitative deasign. Result shows that internship based on Participatory Action Research has been conducted in group from preparation, implementation, until evaluation. Internalization process of cooperative values in internship occurs when the students have dinamic, participative and collaborative learning making process in making Mapping, Seasonal Calender, Diagram Venn, Time Line, Trend and Change, Matrix ranking and flowchart. Partisipative model can be developed on purpose, content, method, and evaluation

  9. Increasing Community Research Capacity to Address Health Disparities.

    Science.gov (United States)

    Komaie, Goldie; Ekenga, Christine C; Sanders Thompson, Vetta L; Goodman, Melody S

    2017-02-01

    The Community Research Fellows Training program is designed to enhance capacity for community-based participatory research; program participants completed a 15-week, Master of Public Health curriculum. We conducted qualitative, semistructured interviews with 81 participants from two cohorts to evaluate the learning environment and how the program improved participants' knowledge of public health research. Key areas that provided a conducive learning environment included the once-a-week schedule, faculty and participant diversity, and community-focused homework assignments. Participants discussed how the program enhanced their understanding of the research process and raised awareness of public health-related issues for application in their personal lives, professional occupations, and in their communities. These findings highlight key programmatic elements of a successful public health training program for community residents.

  10. Multidisciplinary and participatory workshops with stakeholders in a community of extreme poverty in the Peruvian Amazon: Development of priority concerns and potential health, nutrition and education interventions

    Directory of Open Access Journals (Sweden)

    Gyorkos Theresa W

    2007-07-01

    Full Text Available Abstract Background Communities of extreme poverty suffer disproportionately from a wide range of adverse outcomes, but are often neglected or underserved by organized services and research attention. In order to target the first Millennium Development Goal of eradicating extreme poverty, thereby reducing health inequalities, participatory research in these communities is needed. Therefore, the purpose of this study was to determine the priority problems and respective potential cost-effective interventions in Belen, a community of extreme poverty in the Peruvian Amazon, using a multidisciplinary and participatory focus. Methods Two multidisciplinary and participatory workshops were conducted with important stakeholders from government, non-government and community organizations, national institutes and academic institutions. In Workshop 1, participants prioritized the main health and health-related problems in the community of Belen. Problem trees were developed to show perceived causes and effects for the top six problems. In Workshop 2, following presentations describing data from recently completed field research in school and household populations of Belen, participants listed potential interventions for the priority problems, including associated barriers, enabling factors, costs and benefits. Results The top ten priority problems in Belen were identified as: 1 infant malnutrition; 2 adolescent pregnancy; 3 diarrhoea; 4 anaemia; 5 parasites; 6 lack of basic sanitation; 7 low level of education; 8 sexually transmitted diseases; 9 domestic violence; and 10 delayed school entry. Causes and effects for the top six problems, proposed interventions, and factors relating to the implementation of interventions were multidisciplinary in nature and included health, nutrition, education, social and environmental issues. Conclusion The two workshops provided valuable insight into the main health and health-related problems facing the community of

  11. Participatory design of mass health communication in three languages for seniors and people with disabilities on Medicaid.

    Science.gov (United States)

    Neuhauser, Linda; Rothschild, Beccah; Graham, Carrie; Ivey, Susan L; Konishi, Susana

    2009-12-01

    We used participatory design methods to develop and test guidebooks about health care choices intended for 600 000 English-, Spanish-, and Chinese-speaking seniors and people with disabilities receiving Medicaid in California. Design and testing processes were conducted with consumers and professionals; they included 24 advisory group interviews, 36 usability tests, 18 focus groups (105 participants), 51 key informant interviews, guidebook readability and suitability testing, linguistic adaptation, and iterative revisions of 4 prototypes. Participatory design processes identified preferences of intended audiences for guidebook content, linguistic adaptation, and format; guidebook readability was scored at the sixth- to eighth-grade level and suitability at 95%. These findings informed the design of a separate efficacy study that showed high guidebook usage and satisfaction, and better gains in knowledge, confidence, and intended behaviors among intervention participants than among control participants. Participatory design can be used effectively in mass communication to inform vulnerable audiences of health care choices. The techniques described can be adapted for a broad range of health communication interventions.

  12. Participatory approach to identify interventions to improve the health, safety, and work productivity of smallholder women vegetable farmers in the Gambia.

    Science.gov (United States)

    Vanderwal, Londa; Rautiainen, Risto; Ramirez, Marizen; Kuye, Rex; Peek-Asa, Corinne; Cook, Thomas; Culp, Kennith; Donham, Kelley

    2011-03-01

    This paper describes the qualitative, community-based participatory approach used to identify culturally-acceptable and sustainable interventions to improve the occupational health, safety, and productivity of smallholder women vegetable farmers in The Gambia (West Africa). This approach was used to conduct: 1) analysis of the tasks and methods traditionally used in vegetable production, and 2) selection of interventions. The most arduous garden tasks that were amenable to interventions were identified, and the interventions were selected through a participatory process for further evaluation. Factors contributing to the successful implementation of the participatory approach used in this study included the following: 1) ensuring that cultural norms were respected and observed; 2) working closely with the existing garden leadership structure; and 3) research team members working with the subjects for an extended period of time to gain first-hand understanding of the selected tasks and to build credibility with the subjects.

  13. Participatory Action Research for Development of Prospective Teachers' Professionality during Their Pedagogical Practice

    Science.gov (United States)

    Strode, Aina

    2015-01-01

    Implementation of participatory action research during pedagogical practice facilitates sustainable education because its objective is to understand professional practice, enrich the capacity of involved participants and an opportunity to make inquiries for the improvement of quality. In the research of professional practice, subjects explore…

  14. Motivation Matters: Lessons for REDD+ Participatory Measurement, Reporting and Verification from Three Decades of Child Health Participatory Monitoring in Indonesia.

    Science.gov (United States)

    Ekowati, Dian; Hofstee, Carola; Praputra, Andhika Vega; Sheil, Douglas

    2016-01-01

    Participatory Measurement, Reporting and Verification (PMRV), in the context of reducing emissions from deforestation and forest degradation with its co-benefits (REDD+) requires sustained monitoring and reporting by community members. This requirement appears challenging and has yet to be achieved. Other successful, long established, community self-monitoring and reporting systems may provide valuable lessons. The Indonesian integrated village healthcare program (Posyandu) was initiated in the 1980s and still provides effective and successful participatory measurement and reporting of child health status across the diverse, and often remote, communities of Indonesia. Posyandu activities focus on the growth and development of children under the age of five by recording their height and weight and reporting these monthly to the Ministry of Health. Here we focus on the local Posyandu personnel (kaders) and their motivations and incentives for contributing. While Posyandu and REDD+ measurement and reporting activities differ, there are sufficient commonalities to draw useful lessons. We find that the Posyandu kaders are motivated by their interests in health care, by their belief that it benefits the community, and by encouragement by local leaders. Recognition from the community, status within the system, training opportunities, competition among communities, and small payments provide incentives to sustain participation. We examine these lessons in the context of REDD+.

  15. Identifying consumer's needs of health information technology through an innovative participatory design approach among English- and Spanish-speaking urban older adults.

    Science.gov (United States)

    Lucero, R; Sheehan, B; Yen, P; Velez, O; Nobile-Hernandez, D; Tiase, V

    2014-01-01

    We describe an innovative community-centered participatory design approach, Consumer-centered Participatory Design (C2PD), and the results of applying C2PD to design and develop a web-based fall prevention system. We conducted focus groups and design sessions with English- and Spanish-speaking community-dwelling older adults. Focus group data were summarized and used to inform the context of the design sessions. Descriptive content analysis methods were used to develop categorical descriptions of design session informant's needs related to information technology. The C2PD approach enabled the assessment and identification of informant's needs of health information technology (HIT) that informed the development of a falls prevention system. We learned that our informants needed a system that provides variation in functions/content; differentiates between actionable/non-actionable information/structures; and contains sensory cues that support wide-ranging and complex tasks in a varied, simple, and clear interface to facilitate self-management. The C2PD approach provides community-based organizations, academic researchers, and commercial entities with a systematic theoretically informed approach to develop HIT innovations. Our community-centered participatory design approach focuses on consumer's technology needs while taking into account core public health functions.

  16. Participatory workplace wellness programs: reward, penalty, and regulatory conflict.

    Science.gov (United States)

    Pomeranz, Jennifer L

    2015-06-01

    POLICY POINTS: Workplace wellness programs that provide incentives for completing a health risk assessment are a form of participatory programs. There are legal and ethical concerns when employers assess penalties for not completing a health risk assessment, raising questions about the voluntariness of such a program. The Departments of Treasury, Labor, and Health and Human Services' 2013 regulations for participatory programs and employers' current practices conflict with the Equal Employment Opportunity Commission's prevailing interpretation of the Americans with Disabilities Act of 1990. In keeping with the Patient Protection and Affordable Care Act, Congress revised the law related to workplace wellness programs. In June 2013, the Departments of Treasury, Labor, and Health and Human Services passed the final regulations, updating their 2006 regulatory framework. Participatory programs that reward the completion of a health risk assessment are now the most common type of wellness program in the United States. However, legal and ethical concerns emerge when employers utilize incentives that raise questions about the voluntariness of such programs. At issue is that under the Americans with Disabilities Act (ADA) of 1990, employers cannot require health-related inquiries and exams. To analyze the current interpretation of the ADA, I conducted research on both LexisNexis and federal agency websites. The resulting article evaluates the differences in the language of Congress's enabling legislation and the federal departments' regulations and how they may conflict with the ADA. It also reviews the federal government's authority to address both the legal conflict and ethical concerns related to nonvoluntary participatory programs. Employers' practices and the federal departments' regulations conflict with the current interpretation of the ADA by permitting employers to penalize employees who do not complete a health risk assessment. The departments' regulations may be

  17. Perceptions That Influence the Maintenance of Scientific Integrity in Community-Based Participatory Research

    Science.gov (United States)

    Kraemer Diaz, Anne E.; Spears Johnson, Chaya R.; Arcury, Thomas A.

    2015-01-01

    Scientific integrity is necessary for strong science; yet many variables can influence scientific integrity. In traditional research, some common threats are the pressure to publish, competition for funds, and career advancement. Community-based participatory research (CBPR) provides a different context for scientific integrity with additional and…

  18. Effect of Participatory Research on Farmers' Knowledge and Practice of IPM: The Case of Cotton in Benin

    Science.gov (United States)

    Togbé, Codjo Euloge; Haagsma, Rein; Aoudji, Augustin K. N.; Vodouhê, Simplice D.

    2015-01-01

    Purpose: This study assesses the effect of participatory research on farmers' knowledge and practice of Integrated Pest Management (IPM) in Benin. The participatory field experiments were carried out during the 2011-2012 cotton growing season, and focused on the development and application of pest management knowledge. Methodology: A…

  19. Non-Participatory Intervention in a Traditional Participatory Organization

    DEFF Research Database (Denmark)

    Jønsson, Thomas; Jeppesen, Hans Jeppe

    2009-01-01

    The aim of the present study is to investigate employee attitudes to non-participatory (topdown) changes in an organizational environment that has hitherto been participatory.Until now, research has traditionally investigated the effects of increased organizational influence on employee attitudes...... and behaviour. This study takes the opposite approach by looking at a decrease in influence. The study was undertaken in a production company with 480 employees. The work was organized in production lines and semi-autonomous working groups. Data was compiled via interviews with selected employees from three...... kinds of production areas: Areas that had implemented 1) all of the  planned changes; 2) some of the changes; or 3) only a few of the changes. The results show that the employees’ reactions to the non-participatory change process addressed the decrease of influence and the consequences thereof; i...

  20. Community action research track: Community-based participatory research and service-learning experiences for medical students.

    Science.gov (United States)

    Gimpel, Nora; Kindratt, Tiffany; Dawson, Alvin; Pagels, Patti

    2018-04-01

    Community-based participatory research (CBPR) and service-learning are unique experiential approaches designed to train medical students how to provide individualized patient care from a population perspective. Medical schools in the US are required to provide support for service-learning and community projects. Despite this requirement, few medical schools offer structured service-learning. We developed the Community Action Research Track (CART) to integrate population medicine, health promotion/disease prevention and the social determinants of health into the medical school curriculum through CBPR and service-learning experiences. This article provides an overview of CART and reports the program impact based on students' participation, preliminary evaluations and accomplishments. CART is an optional 4‑year service-learning experience for medical students interested in community health. The curriculum includes a coordinated longitudinal program of electives, community service-learning and lecture-based instruction. From 2009-2015, 146 CART students participated. Interests in public health (93%), community service (73%), primary care (73%), CBPR (60%) and community medicine (60%) were the top reasons for enrolment. Significant improvements in mean knowledge were found when measuring the principles of CBPR, levels of prevention, determining health literacy and patient communication strategies (all p's Projects were disseminated by at least 65 posters and four oral presentations at local, national and international professional meetings. Six manuscripts were published in peer-reviewed journals. CART is an innovative curriculum for training future physicians to be community-responsive physicians. CART can be replicated by other medical schools interested in offering a longitudinal CBPR and service-learning track in an urban metropolitan setting.

  1. Relational Accountability in Indigenizing Visual Research for Participatory Communication

    Directory of Open Access Journals (Sweden)

    Verena Thomas

    2016-02-01

    Full Text Available This article argues that an indigenous approach to communication research allows us to re-think academic approaches of engaging in and evaluating participatory communication research. It takes as its case study the Komuniti Tok Piksa project undertaken in the Highlands of Papua New Guinea. The project explores ways in which visual methods when paired with a community action approach embedded within an indigenous framework can be used to facilitate social change through meaningful participation. It involves communities to narrate their experiences in regard to HIV and AIDS and assists them in designing and recording their own messages. Local researchers are trained in using visual tools to facilitate this engagement with the communities.

  2. Using CBPR Methods in College Health Research: Exploring Excessive Alcohol Consumption

    Science.gov (United States)

    Bulmer, Sandra M.; Barton, Barbara A.; Liefeld, Julie; Montauti, Sara; Santos, Stephanie; Richard, Melissa; Hnath, Laura; Pelletier, Kara; Lalanne, Jude

    2016-01-01

    Community-based participatory research (CBPR) is a collaborative methodology that uniquely involves stakeholders in all stages of the research process. CBPR has been widely utilized in the field of public health, but not widely employed with college populations. This study utilized CBPR methods within a college community to gain insight into…

  3. Participatory design methods in telemedicine research

    DEFF Research Database (Denmark)

    Clemensen, Jane; Rothmann, Mette Juel; Smith, Anthony C.

    2017-01-01

    Healthcare systems require a paradigm shift in the way healthcare services are delivered to counteract demographic changes in patient populations, expanding technological developments and the increasing complexity of healthcare. Participatory design (PD) is a methodology that promotes the partici...

  4. Reflection on an interprofessional communitybased participatory research project

    Directory of Open Access Journals (Sweden)

    A Rhoda

    2016-11-01

    Full Text Available Background. A collaborative interprofessional research project that involved community members was beneficial to community development.Objective. To draw upon the experiences of academics relating to their involvement in an interprofessional community-based participatory research(CBPR project.Methods. A Delphi study was applied as a self-reflective evaluation process to reach consensus on the lessons learnt from participation in a CBPR project. Round one of the Delphi employed closed-ended questions and the responses were analysed descriptively using Microsoft Excel (USA. The second round consisted mainly of open-ended questions and responses, and was analysed qualitatively. Ethical clearance was obtained from the University of the Western Cape research committee.Results. Based on round one of the Delphi study, it became evident that recognition of the community as a unit of identity, addressing health from physical, emotional and social perspectives and formation of long-term commitments were the CBPR principles most applied. Disseminating information to all partners and facilitation of the collaborative equitable involvement of all partners in all phases of the research were the principles least applied. Themes that emerged from the second round of the Delphi included the identification of clear objectives based on the needs of the community, a shift from identification of the needs of the community to the implementation of strategies, and the creation of capacity-building opportunities for all stakeholders.Conclusion. In a reflection on the research process, the interprofessional team of academics found that the basics of CBPR should be attended to first. A focus on clear objectives, implementation strategies and capacity building is important in CBPR.

  5. Learning from doing: the case for combining normalisation process theory and participatory learning and action research methodology for primary healthcare implementation research.

    Science.gov (United States)

    de Brún, Tomas; O'Reilly-de Brún, Mary; O'Donnell, Catherine A; MacFarlane, Anne

    2016-08-03

    The implementation of research findings is not a straightforward matter. There are substantive and recognised gaps in the process of translating research findings into practice and policy. In order to overcome some of these translational difficulties, a number of strategies have been proposed for researchers. These include greater use of theoretical approaches in research focused on implementation, and use of a wider range of research methods appropriate to policy questions and the wider social context in which they are placed. However, questions remain about how to combine theory and method in implementation research. In this paper, we respond to these proposals. Focussing on a contemporary social theory, Normalisation Process Theory, and a participatory research methodology, Participatory Learning and Action, we discuss the potential of their combined use for implementation research. We note ways in which Normalisation Process Theory and Participatory Learning and Action are congruent and may therefore be used as heuristic devices to explore, better understand and support implementation. We also provide examples of their use in our own research programme about community involvement in primary healthcare. Normalisation Process Theory alone has, to date, offered useful explanations for the success or otherwise of implementation projects post-implementation. We argue that Normalisation Process Theory can also be used to prospectively support implementation journeys. Furthermore, Normalisation Process Theory and Participatory Learning and Action can be used together so that interventions to support implementation work are devised and enacted with the expertise of key stakeholders. We propose that the specific combination of this theory and methodology possesses the potential, because of their combined heuristic force, to offer a more effective means of supporting implementation projects than either one might do on its own, and of providing deeper understandings of

  6. Participatory health councils and good governance: healthy democracy in Brazil?

    Science.gov (United States)

    Kohler, Jillian Clare; Martinez, Martha Gabriela

    2015-02-19

    The Brazilian Government created Participatory Health Councils (PHCs) to allow citizen participation in the public health policy process. PHCs are advisory bodies that operate at all levels of government and that bring together different societal groups to monitor Brazil's health system. Today they are present in 98% of Brazilian cities, demonstrating their popularity and thus their potential to help ensure that health policies are in line with citizen preferences. Despite their expansive reach, their real impact on health policies and health outcomes for citizens is uncertain. We thus ask the following question: Do PHCs offer meaningful opportunities for open participation and influence in the public health policy process? Thirty-eight semi-structured interviews with health council members were conducted. Data from these interviews were analyzed using a qualitative interpretive content analysis approach. A quantitative analysis of PHC data from the Sistema de Acompanhamento dos Conselhos de Saude (SIACS) database was also conducted to corroborate findings from the interviews. We learned that PHCs fall short in many of the categories of good governance. Government manipulation of the agenda and leadership of the PHCs, delays in the implementation of PHC decision making, a lack of training of council members on relevant technical issues, the largely narrow interests of council members, the lack of transparency and monitoring guidelines, a lack of government support, and a lack of inclusiveness are a few examples that highlight why PHCs are not as effective as they could be. Although PHCs are intended to be inclusive and participatory, in practice they seem to have little impact on the health policymaking process in Brazil. PHCs will only be able to fulfil their mandate when we see good governance largely present. This will require a rethinking of their governance structures, processes, membership, and oversight. If change is resisted, the PHCs will remain largely

  7. Multiple Methodologies: Using Community-Based Participatory Research and Decolonizing Methodologies in Kenya

    Science.gov (United States)

    Elder, Brent C.; Odoyo, Kenneth O.

    2018-01-01

    In this project, we examined the development of a sustainable inclusive education system in western Kenya by combining community-based participatory research (CBPR) and decolonizing methodologies. Through three cycles of qualitative interviews with stakeholders in inclusive education, participants explained what they saw as foundational components…

  8. Organizational participatory research: a systematic mixed studies review exposing its extra benefits and the key factors associated with them.

    Science.gov (United States)

    Bush, Paula L; Pluye, Pierre; Loignon, Christine; Granikov, Vera; Wright, Michael T; Pelletier, Jean-François; Bartlett-Esquilant, Gillian; Macaulay, Ann C; Haggerty, Jeannie; Parry, Sharon; Repchinsky, Carol

    2017-10-10

    In health, organizational participatory research (OPR) refers to health organization members participating in research decisions, with university researchers, throughout a study. This non-academic partner contribution to the research may take the form of consultation or co-construction. A drawback of OPR is that it requires more time from all those involved, compared to non-participatory research approaches; thus, understanding the added value of OPR, if any, is important. Thus, we sought to assess whether the OPR approach leads to benefits beyond what could be achieved through traditional research. We identified, selected, and appraised OPR health literature, and at each stage, two team members independently reviewed and coded the literature. We used quantitative content analysis to transform textual data into reliable numerical codes and conducted a logistic regression to test the hypothesis that a co-construction type OPR study yields extra benefits with a greater likelihood than consultation-type OPR studies. From 8873 abstracts and 992 full text papers, we distilled a sample of 107 OPR studies. We found no difference between the type of organization members' participation and the likelihood of exhibiting an extra benefit. However, the likelihood of an OPR study exhibiting at least one extra benefit is quadrupled when the impetus for the study comes from the organization, rather than the university researcher(s), or the organization and the university researcher(s) together (OR = 4.11, CI = 1.12-14.01). We also defined five types of extra benefits. This review describes the types of extra benefits OPR can yield and suggests these benefits may occur if the organization initiates the OPR. Further, this review exposes a need for OPR authors to more clearly describe the type of non-academic partner participation in key research decisions throughout the study. Detailed descriptions will benefit others conducting OPR and allow for a re-examination of the

  9. Discovering Voice: A Participatory Action Research Study with Nurses in Uganda

    Directory of Open Access Journals (Sweden)

    Bonnie Fournier

    2007-06-01

    Full Text Available In this article the authors present findings from a qualitative research study carried out with Ugandan nurses from September 2003 until June 2004. They highlight the process and philosophical basis of participatory action research (PAR by reflecting on the challenges, opportunities, outcomes, and ethical issues encountered during the conduct of the research. In this study PAR fostered a climate in which nurses could engage in collective reflection on their practice, make sense of their experiences, and thereby change their understanding of their work.

  10. Developing participatory research in radiology: the use of a graffiti wall, cameras and a video box in a Scottish radiology department

    International Nuclear Information System (INIS)

    Mathers, Sandra A.; Anderson, Helen; McDonald, Sheila; Chesson, Rosemary A.

    2010-01-01

    Participatory research is increasingly advocated for use in health and health services research and has been defined as a 'process of producing new knowledge by systematic enquiry, with the collaboration of those being studied'. The underlying philosophy of participatory research is that those recruited to studies are acknowledged as experts who are 'empowered to truly participate and have their voices heard'. Research methods should enable children to express themselves. This has led to the development of creative approaches of working with children that offer alternatives to, for instance, the structured questioning of children by researchers either through questionnaires or interviews. To examine the feasibility and potential of developing participatory methods in imaging research. We employed three innovative methods of data collection sequentially, namely the provision of: 1) a graffiti wall; 2) cameras, and 3) a video box for children's use. While the graffiti wall was open to all who attended the department, for the other two methods children were allocated to each 'arm' consecutively until our target of 20 children for each was met. The study demonstrated that it was feasible to use all three methods of data collection within the context of a busy radiology department. We encountered no complaints from staff, patients or parents. Children were willing to participate but we did not collect data to establish if they enjoyed the activities, were pleased to have the opportunity to make comments or whether anxieties about their treatment inhibited their participation. The data yield was disappointing. In particular, children's contributions to the graffiti wall were limited, but did reflect the nature of graffiti, and there may have been some 'copycat' comments. Although data analysis was relatively straightforward, given the nature of the data (short comments and simple drawings), the process proved to be extremely time-consuming. This was despite the modest

  11. Developing participatory research in radiology: the use of a graffiti wall, cameras and a video box in a Scottish radiology department

    Energy Technology Data Exchange (ETDEWEB)

    Mathers, Sandra A. [Aberdeen Royal Infirmary, Department of Radiology, Aberdeen (United Kingdom); The Robert Gordon University, Faculty of Health and Social Care, Aberdeen (United Kingdom); Anderson, Helen [Royal Aberdeen Children' s Hospital, Department of Radiology, Aberdeen (United Kingdom); McDonald, Sheila [Royal Aberdeen Children' s Hospital, Aberdeen (United Kingdom); Chesson, Rosemary A. [University of Aberdeen, School of Medicine and Dentistry, Aberdeen (United Kingdom)

    2010-03-15

    Participatory research is increasingly advocated for use in health and health services research and has been defined as a 'process of producing new knowledge by systematic enquiry, with the collaboration of those being studied'. The underlying philosophy of participatory research is that those recruited to studies are acknowledged as experts who are 'empowered to truly participate and have their voices heard'. Research methods should enable children to express themselves. This has led to the development of creative approaches of working with children that offer alternatives to, for instance, the structured questioning of children by researchers either through questionnaires or interviews. To examine the feasibility and potential of developing participatory methods in imaging research. We employed three innovative methods of data collection sequentially, namely the provision of: 1) a graffiti wall; 2) cameras, and 3) a video box for children's use. While the graffiti wall was open to all who attended the department, for the other two methods children were allocated to each 'arm' consecutively until our target of 20 children for each was met. The study demonstrated that it was feasible to use all three methods of data collection within the context of a busy radiology department. We encountered no complaints from staff, patients or parents. Children were willing to participate but we did not collect data to establish if they enjoyed the activities, were pleased to have the opportunity to make comments or whether anxieties about their treatment inhibited their participation. The data yield was disappointing. In particular, children's contributions to the graffiti wall were limited, but did reflect the nature of graffiti, and there may have been some 'copycat' comments. Although data analysis was relatively straightforward, given the nature of the data (short comments and simple drawings), the process proved to be

  12. Tobacco control recommendations identified by LGBT Atlantans in a community-based participatory research project.

    Science.gov (United States)

    Bryant, Lawrence; Damarin, Amanda K; Marshall, Zack

    2014-01-01

    Lesbian, gay, bisexual, and transgender (LGBT) people are increasingly aware that disproportionately high smoking rates severely impact the health of their communities. Motivated to make a change, a group of LGBT community members, policymakers, and researchers from Atlanta carried out a community-based participatory research (CBPR) project. This formative research study sought to identify recommendations for culturally relevant smoking prevention and cessation interventions that could improve the health of Atlanta's LGBT communities. Data presented here come from four focus groups with 36 participants and a community meeting with 30 participants. Among study participants, the most favored interventions were providing LGBT-specific cessation programs, raising awareness about LGBT smoking rates, and getting community venues to go smoke-free. Participants also suggested providing reduced-cost cessation products for low-income individuals, using LGBT "role models" to promote cessation, and ensuring that interventions reach all parts of the community. Findings reinforce insights from community-based research with other marginalized groups. Similarities include the importance of tailoring cessation programs for specific communities, the need to acknowledge differences within communities, and the significance of community spaces in shaping discussions of cessation. Further, this study highlights the need for heightened awareness. The Atlanta LGBT community is largely unaware that high smoking rates affect its health, and is unlikely to take collective action to address this problem until it is understood.

  13. Exploring and Implementing Participatory Action Synthesis

    Science.gov (United States)

    Wimpenny, Katherine; Savin-Baden, Maggi

    2012-01-01

    This article presents participatory action synthesis as a new approach to qualitative synthesis which may be used to facilitate the promotion and use of qualitative research for policy and practice. The authors begin by outlining different forms of qualitative research synthesis and then present participatory action synthesis, a collaborative…

  14. Participatory Innovation

    DEFF Research Database (Denmark)

    Buur, Jacob; Matthews, Ben

    In this paper we discuss the potential for Participatory Design (PD) to make a fundamental contribution to the business-oriented field of user-driven innovation, taking note of where we find PD can best benefit from interaction with this other field. We examine some of the challenges that must...... be addressed if PD is to contribute to innovation processes in companies. We conclude by presenting a research agenda comprising of six promising topics to shape a new discipline of Participatory Innovation....

  15. A community based participatory approach to improving health in a Hispanic population

    Directory of Open Access Journals (Sweden)

    Urquieta de Hernandez Brisa

    2011-04-01

    Full Text Available Abstract Background The Charlotte-Mecklenburg region has one of the fastest growing Hispanic communities in the country. This population has experienced disparities in health outcomes and diminished ability to access healthcare services. This city is home to an established practice-based research network (PBRN that includes community representatives, health services researchers, and primary care providers. The aims of this project are: to use key principles of community-based participatory research (CBPR within a practice-based research network (PBRN to identify a single disease or condition that negatively affects the Charlotte Hispanic community; to develop a community-based intervention that positively impacts the chosen condition and improves overall community health; and to disseminate findings to all stakeholders. Methods/design This project is designed as CBPR. The CBPR process creates new social networks and connections between participants that can potentially alter patterns of healthcare utilization and other health-related behaviors. The first step is the development of equitable partnerships between community representatives, providers, and researchers. This process is central to the CBPR process and will occur at three levels -- community members trained as researchers and outreach workers, a community advisory board (CAB, and a community forum. Qualitative data on health issues facing the community -- and possible solutions -- will be collected at all three levels through focus groups, key informant interviews and surveys. The CAB will meet monthly to guide the project and oversee data collection, data analysis, participant recruitment, implementation of the community forum, and intervention deployment. The selection of the health condition and framework for the intervention will occur at the level of a community-wide forum. Outcomes of the study will be measured using indicators developed by the participants as well as geospatial

  16. Reducing Disparities in Cancer Screening and Prevention through Community-Based Participatory Research Partnerships with Local Libraries: A Comprehensive Dynamic Trial.

    Science.gov (United States)

    Rapkin, Bruce D; Weiss, Elisa; Lounsbury, David; Michel, Tamara; Gordon, Alexis; Erb-Downward, Jennifer; Sabino-Laughlin, Eilleen; Carpenter, Alison; Schwartz, Carolyn E; Bulone, Linda; Kemeny, Margaret

    2017-09-01

    Reduction of cancer-related disparities requires strategies that link medically underserved communities to preventive care. In this community-based participatory research project, a public library system brought together stakeholders to plan and undertake programs to address cancer screening and risk behavior. This study was implemented over 48 months in 20 large urban neighborhoods, selected to reach diverse communities disconnected from care. In each neighborhood, Cancer Action Councils were organized to conduct a comprehensive dynamic trial, an iterative process of program planning, implementation and evaluation. This process was phased into neighborhoods in random, stepped-wedge sequence. Population-level outcomes included self-reported screening adherence and smoking cessation, based on street intercept interviews. Event-history regressions (n = 9374) demonstrated that adherence outcomes were associated with program implementation, as were mediators such as awareness of screening programs and cancer information seeking. Findings varied by ethnicity, and were strongest among respondents born outside the U.S. or least engaged in care. This intervention impacted health behavior in diverse, underserved and vulnerable neighborhoods. It has been sustained as a routine library system program for several years after conclusion of grant support. In sum, participatory research with the public library system offers a flexible, scalable approach to reduce cancer health disparities. © Society for Community Research and Action 2017.

  17. Poetics of Justice: Using Art as Action and Analysis in Participatory Action Research

    Science.gov (United States)

    Ayala, Jennifer; Zaal, Mayida

    2016-01-01

    This article explores the use of art as a form of communication and meaning-making in participatory action research (PAR). The authors, researchers and educators, contemplate this concept through a pedagogical lens, and consider the role that visual and performing arts can play in social action. Based on the work of a youth-adult participatory…

  18. Medical Surveillance, Continuous Health Promotion and a Participatory Intervention in a Small Company.

    Science.gov (United States)

    Magnavita, Nicola

    2018-04-02

    The workplace is an ideal setting for health promotion. The regular medical examination of workers enables us to screen for numerous diseases, spread good practices and correct lifestyles, and obtain a favourable risk/benefit ratio. The continuous monitoring of the level of workers' wellbeing using a holistic approach during medical surveillance enables us to promptly identify problems in work organisation and the company climate. Problems of this kind can be adequately managed by using a participatory approach. The aim of this paper is twofold: to signal this way of proceeding with medical surveillance, and to describe an organisational development intervention. Participatory groups were used to improve occupational life in a small company. After intervention we observed a reduction in levels of perceived occupational stress measured with the Effort/Reward Imbalance questionnaire, and an improvement in psychological wellbeing assessed by means of the Goldberg Anxiety/Depression scale. Although the limited size of the sample and the lack of a control group call for a cautious evaluation of this study, the participatory strategy proved to be a useful tool due to its cost-effectiveness.

  19. Human Securitability: A Participatory Action Research Study Involving Novice Teachers and Youngsters

    Science.gov (United States)

    Kravale-Paulina, Marite; Olehnovica, Eridiana

    2015-01-01

    Civic participation, initiative and interest in current events can bridge the alienation felt towards national and municipal institutions, thereby enabling individuals to improve their quality of life and contribute to all-round sustainable development of their resident state. This paper reports on a participatory action research study into civic…

  20. Ethics and community-based participatory research: perspectives from the field.

    Science.gov (United States)

    Bastida, Elena M; Tseng, Tung-Sung; McKeever, Corliss; Jack, Leonard

    2010-01-01

    Exploring the importance of ethical issues in the conduct of community-based participatory research (CBPR) continues to be an important topic for researchers and practitioners. This article uses the Beyond Sabor Project, a CBPR project implemented in the Lower Rio Grande Valley, as a case example to discuss ethical issues such as the importance of increasing community involvement in research, ensuring that communities benefit from the research, sharing leadership roles, and sensitive issues regarding data collection and sharing. Thereafter, this article concludes with a brief discussion of six principles that can inform the practice of ethical conduct when implementing CBPR studies. This article also lists additional reading resources on the importance of ethics in the conduct of CBPR.

  1. Accreditation and Participatory Design in the Health-Care Sector

    DEFF Research Database (Denmark)

    Simonsen, Jesper; Scheuer, John Damm; Hertzum, Morten

    2015-01-01

    We reconsider the role of participatory design approaches emphasizing the current context of the accreditation regime imposed on the Danish healthcare sector. We describe effects-driven IT development as an instrument supporting sustained participatory design. Effects-driven IT development includes...... specifying, realizing, and measuring effects from using an information technology. This approach aligns with much of the logic inherent in accreditation and it supports challenging parts of the accreditation process. Effects-driven IT development furthermore might support effects related to clinical evidence......-based thinking. We describe and compare effects- driven IT development with accreditation and discuss the prospects and challenges for this approach to participatory design within the healthcare domain....

  2. Ecology and Ethics in Participatory Collaborative Action Research: An Argument for the Authentic Participation of Students in Educational Research

    Science.gov (United States)

    Collins, Steve

    2004-01-01

    A conception of action research is offered that is collaborative, participatory, targets ethical issues and includes students. Collaboration is "organic" in that all members share the goal of the research and are interdependent in pursuing that goal. Participation is authentic, requiring a continuing negotiation of planning, roles, power…

  3. Inform, Perform, Transform: Modeling In-School Youth Participatory Action Research through Gameplay

    Science.gov (United States)

    Garcia, Antero

    2012-01-01

    In this article, the author explores youth participatory action research (YPAR) through gameplay. He describes Ask Anansi, an alternate reality game (ARG) played in the "real world" by weaving elements of storytelling and fiction into the environment played as part of class experience. This game which the author created drove the…

  4. From leaky pipeline to irrigation system: minority education through the lens of community-based participatory research.

    Science.gov (United States)

    James, Rosalina; Starks, Helene; Segrest, Valerie Ann; Burke, Wylie

    2012-01-01

    Higher education has long made efforts to increase underrepresented minority participation in biomedical research and health fields. However, relatively few minority trainees complete advanced degrees or proceed to independent research careers, a loss referred to as the "leaky pipeline." Minority trainees may take alternate pathways to climbing the academic ladder, exiting to pursue multiple disciplinary or community-serving roles. The authors propose a model for understanding minority departures from the education pipeline as a basis for supporting careers that align with community goals for health. Concepts of the traditional pipeline training model are compared with a model that aligns with community-based participatory research (CBPR) principles and practices. The article describes an irrigation model that incorporates informal learning from academic and community knowledge bases to prepare trainees for CBPR and interdisciplinary research. Students serve as agents that foster individual, institutional, and social change needed to address health problems while attending to root causes of disparities. Viewing minority students as agents for community engagement allows institutions to reassess the role training can play in diversifying participation in higher education and research. An irrigation model supports development of an infrastructure that optimizes success at all post-secondary levels, and enhances CBPR capacity wherever trainees live, work, and learn. Linking formal education to informal learning in context of CBPR experiences can also reduce community mistrust of research while nurturing productive research partnerships with communities to address health disparities.

  5. They [do more than] Interrupt Us from Sadness: Exploring the impact of participatory music making on social determinants of health and wellbeing for refugees in Australia

    Directory of Open Access Journals (Sweden)

    N. Sunderland

    2015-07-01

    Full Text Available This paper reports on the outcomes of an exploratory narrative study on the impact of participatory music making on social determinants of health (SDOH and wellbeing for refugees in Brisbane, Australia. A key component of this exploratory research was to map health and wellbeing outcomes of music participation using an existing SDOH framework developed by researchers in the field of health promotion (Schulz & Northridge, 2004. This paper maps reported health and wellbeing outcomes for five refugee and asylum seeker members of a participatory Brisbane-based music initiative, the Scattered People, along an SDOH continuum ranging from individual level through to macro level fundamental determinants of health.While most themes emerging from this study corresponded to distinct categories in the Schulz and Northridge SDOH framework, three key aspects, which were critical to the achievement of wellbeing for participants, did not fit any of the pre-defined categories. These were: cultural expression, music making, and consolidation of personal and social identity. The importance of those themes to participants suggests that music and wellbeing studies involving culturally diverse groups and from a SDOH perspective may need to consider broader, more relevant concepts. The paper provides recommendations for future interdisciplinary research in this field. 

  6. End-of-Life care in a community garden: Findings from a Participatory Action Research project in regional Australia.

    Science.gov (United States)

    Marsh, Pauline; Gartrell, Gabrielle; Egg, Gwen; Nolan, Andrew; Cross, Merylin

    2017-05-01

    This article presents findings from research that explored how a community garden might function as a place of end-of-life and bereavement support. Adopting Participatory Action Research (PAR) methods, and informed by Third Place theory and notions of therapeutic landscape, creative consultations were held in the Garden and people's homes. The findings provide insights into the nature of informal care as it is played out in the liminal garden space, between home and institution. The results illuminate the therapeutic landscape of community gardens, and contribute new understandings to the fields of PAR, health geography and end-of-life care. Copyright © 2017 Elsevier Ltd. All rights reserved.

  7. Participatory scenario planning in place-based social-ecological research

    DEFF Research Database (Denmark)

    Rozas, Elisa Oteros; Martín-López, Berta; Daw, Tim M.

    2015-01-01

    Participatory scenario planning (PSP) is an increasingly popular tool in place-based environmental research for evaluating alternative futures of social-ecological systems. Although a range of guidelines on PSP methods are available in the scientific and grey literature, there is a need to reflect......, hence facilitating the appropriate uptake of such scenario tools in the future. We analyzed 23 PSP case studies conducted by the authors in a wide range of social-ecological settings by exploring seven aspects: (1) the context; (2) the original motivations and objectives; (3) the methodological approach...... of PSP, particularly when tailored to shared objectives between local people and researchers, has enriched environmental management and scientific research through building common understanding and fostering learning about future planning of social-ecological systems. However, PSP still requires greater...

  8. Effect on mental health of a participatory intervention to improve psychosocial work environment: a cluster randomized controlled trial among nurses.

    Science.gov (United States)

    Uchiyama, Ayako; Odagiri, Yuko; Ohya, Yumiko; Takamiya, Tomoko; Inoue, Shigeru; Shimomitsu, Teruichi

    2013-01-01

    Improvement of psychosocial work environment has proved to be valuable for workers' mental health. However, limited evidence is available for the effectiveness of participatory interventions. The purpose of this study was to investigate the effect on mental health among nurses of a participatory intervention to improve the psychosocial work environment. A cluster randomized controlled trial was conducted in hospital settings. A total of 434 nurses in 24 units were randomly allocated to 11 intervention units (n=183) and 13 control units (n=218). A participatory program was provided to the intervention units for 6 months. Depressive symptoms as mental health status and psychosocial work environment, assessed by the Job Content Questionnaire, the Effort-Reward Imbalance Questionnaire, and the Quality Work Competence questionnaire, were measured before and immediately after the 6-month intervention by a self-administered questionnaire. No significant intervention effect was observed for mental health status. However, significant intervention effects were observed in psychosocial work environment aspects, such as Coworker Support (pwork environment, but not mental health, among Japanese nurses.

  9. Participatory Democracy, Community Organizing and the Community Assessment of Freeway Exposure and Health (CAFEH) Partnership.

    Science.gov (United States)

    Sprague Martinez, Linda; Reisner, Ellin; Campbell, Maria; Brugge, Doug

    2017-02-04

    Background: Conflicting interests, power imbalance and relationships characterized by distrust are just a few of the many challenges community-academic research partnerships face. In addition, the time it takes to build relationships is often overlooked, which further complicates matters and can leave well-intentioned individuals re-creating oppressive conditions through inauthentic partnerships. This paper presents a novel approach of using meeting minutes to explore partnership dynamics. The Community Assessment of Freeway Exposure and Health (CAFEH) partnership is used as an illustrative case study to identify how community academic partnerships overcome the challenges associated with community-based participatory research (CBPR). CAFEH is a study of ultrafine particle exposure (UFP) near highways in the Boston, MA area. Methods: Qualitative analysis was applied to meeting minutes and process evaluation reports from the first three years of the CAFEH study ( n = 73 files). In addition, a group meeting was held with project partners in order to contextualize the findings from the document analysis. Results: The three most commonly referenced challenges included language barriers, the overall project structure and budgetary constraints. Meanwhile, a heavy emphasis on process and an approach steeped in participatory democracy facilitated CAFEH's ability to overcome these challenges, as well as sustain and augment strong partnership ties. Conclusions: This experience suggests that leadership that incorporates an organizing approach and a transformational style facilitates CBPR processes and helps teams surmount challenges.

  10. Evaluation in health: participatory methodology and involvement of municipal managers.

    Science.gov (United States)

    Almeida, Cristiane Andrea Locatelli de; Tanaka, Oswaldo Yoshimi

    2016-08-04

    To analyze scopes and limits of the use of participatory methodology of evaluation with municipal health managers and administrators. Qualitative research with health policymakers and managers of the Comissão Intergestores Regional (CIR - Regional Interagency Commission) of a health region of the state of Sao Paulo in Brazil. Representatives from seven member cities participated in seven workshops facilitated by the researchers, with the aim of assessing a specific problem of the care line, which would be used as a tracer of the system integrality. The analysis of the collected empirical material was based on the hermeneutic-dialectic methodology and aimed at the evaluation of the applied participatory methodology, according to its capacity of promoting a process of assessment capable to be used as a support for municipal management. With the participatory approach of evaluation, we were able to promote in-depth discussions with the group, especially related to the construction of integral care and to the inclusion of the user's perspective in decision-making, linked to the search for solution to concrete problems of managers. By joint exploration, the possibility of using data from electronic information systems was opened, as well as information coming directly from the users of the services, to enhance discussions and negotiations between partners. The participants were disbelievers of the replication potential of this type of evaluation without the direct monitoring of the academy, given the difficulty of organizing the process in everyday life, already taken by emergency and political issues. Evaluations of programs and services carried out within the Regional Interagency Commission, starting from the local interest and facilitating the involvement of its members by the use of participatory methodologies, can contribute to the construction of integral care. To the extent that the act of evaluating stay invested with greater significance to the local actors

  11. Human ergology that promotes participatory approach to improving safety, health and working conditions at grassroots workplaces: achievements and actions.

    Science.gov (United States)

    Kawakami, Tsuyoshi

    2011-12-01

    Participatory approaches are increasingly applied to improve safety, health and working conditions of grassroots workplaces in Asia. The core concepts and methods in human ergology research such as promoting real work life studies, relying on positive efforts of local people (daily life-technology), promoting active participation of local people to identify practical solutions, and learning from local human networks to reach grassroots workplaces, have provided useful viewpoints to devise such participatory training programmes. This study was aimed to study and analyze how human ergology approaches were applied in the actual development and application of three typical participatory training programmes: WISH (Work Improvement for Safe Home) with home workers in Cambodia, WISCON (Work Improvement in Small Construction Sites) with construction workers in Thailand, and WARM (Work Adjustment for Recycling and Managing Waste) with waste collectors in Fiji. The results revealed that all the three programmes, in the course of their developments, commonly applied direct observation methods of the work of target workers before devising the training programmes, learned from existing local good examples and efforts, and emphasized local human networks for cooperation. These methods and approaches were repeatedly applied in grassroots workplaces by taking advantage of their the sustainability and impacts. It was concluded that human ergology approaches largely contributed to the developments and expansion of participatory training programmes and could continue to support the self-help initiatives of local people for promoting human-centred work.

  12. 4Ps medicine of the fatty liver: the research model of predictive, preventive, personalized and participatory medicine-recommendations for facing obesity, fatty liver and fibrosis epidemics.

    Science.gov (United States)

    Trovato, Francesca Maria; Catalano, Daniela; Musumeci, Giuseppe; Trovato, Guglielmo M

    2014-01-01

    Relationship between adipose tissue and fatty liver, and its possible evolution in fibrosis, is supported by clinical and research experience. Given the multifactorial pathogenesis of non-alcoholic fatty liver disease (NAFLD), treatments for various contributory risk factors have been proposed; however, there is no single validated therapy or drug association recommended for all cases which can stand alone. Mechanisms, diagnostics, prevention and treatment of obesity, fatty liver and insulin resistance are displayed along with recommendations and position points. Evidences and practice can get sustainable and cost-benefit valuable outcomes by participatory interventions. These recommendations can be enhanced by comprehensive research projects, addressed to societal issues and innovation, market appeal and industry development, cultural acceptance and sustainability. The basis of participatory medicine is a greater widespread awareness of a condition which is both a disease and an easy documented and inclusive clue for associated diseases and unhealthy lifestyle. This model is suitable for addressing prevention and useful for monitoring improvement, worsening and adherence with non-invasive imaging tools which allow targeted approaches. The latter include health psychology and nutritional and physical exercise prescription expertise disseminated by continuous medical education but, more important, by concrete curricula for training undergraduate and postgraduate students. It is possible and recommended to do it by early formal teaching of ultrasound imaging procedures and of practical lifestyle intervention strategies, including approaches aimed to healthier fashion suggestions. Guidelines and requirements of research project funding calls should be addressed also to NAFLD and allied conditions and should encompass the goal of training by research and the inclusion of participatory medicine topics. A deeper awareness of ethics of competences in health professionals

  13. What can a participatory approach to evaluation contribute to the field of integrated care?

    Science.gov (United States)

    Eyre, Laura; Farrelly, Michael; Marshall, Martin

    2017-07-01

    Better integration of care within the health sector and between health and social care is seen in many countries as an essential way of addressing the enduring problems of dwindling resources, changing demographics and unacceptable variation in quality of care. Current research evidence about the effectiveness of integration efforts supports neither the enthusiasm of those promoting and designing integrated care programmes nor the growing efforts of practitioners attempting to integrate care on the ground. In this paper we present a methodological approach, based on the principles of participatory research, that attempts to address this challenge. Participatory approaches are characterised by a desire to use social science methods to solve practical problems and a commitment on the part of researchers to substantive and sustained collaboration with relevant stakeholders. We describe how we applied an emerging practical model of participatory research, the researcher-in-residence model, to evaluate a large-scale integrated care programme in the UK. We propose that the approach added value to the programme in a number of ways: by engaging stakeholders in using established evidence and with the benefits of rigorously evaluating their work, by providing insights for local stakeholders that they were either not familiar with or had not fully considered in relation to the development and implementation of the programme and by challenging established mindsets and norms. While there is still much to learn about the benefits and challenges of applying participatory approaches in the health sector, we demonstrate how using such approaches have the potential to help practitioners integrate care more effectively in their daily practice and help progress the academic study of integrated care. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  14. Participatory Research and Development for Sustainable Agriculture ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    60 Participatory On-Farm Technology Testing: The Suitability of Different Types .... the phases or types of activities that are specifically covered by existing method- ...... from then on becomes responsible for system operation and maintenance.

  15. Participatory Design Research as a Practice for Systemic Repair: Doing Hand-in-Hand Math Research with Families

    Science.gov (United States)

    Booker, Angela; Goldman, Shelley

    2016-01-01

    Success and failure in formal mathematics education has been used to legitimize stratification. We describe participatory design research as a methodology for systemic repair. The analysis describes epistemic authority--exercising the right or the power to know--as a form of agency in processes of mathematical problem solving and learning. We…

  16. Ethical dilemmas in community-based participatory research: recommendations for institutional review boards.

    Science.gov (United States)

    Flicker, Sarah; Travers, Robb; Guta, Adrian; McDonald, Sean; Meagher, Aileen

    2007-07-01

    National and international codes of research conduct have been established in most industrialized nations to ensure greater adherence to ethical research practices. Despite these safeguards, however, traditional research approaches often continue to stigmatize marginalized and vulnerable communities. Community-based participatory research (CBPR) has evolved as an effective new research paradigm that attempts to make research a more inclusive and democratic process by fostering the development of partnerships between communities and academics to address community-relevant research priorities. As such, it attempts to redress ethical concerns that have emerged out of more traditional paradigms. Nevertheless, new and emerging ethical dilemmas are commonly associated with CBPR and are rarely addressed in traditional ethical reviews. We conducted a content analysis of forms and guidelines commonly used by institutional review boards (IRBs) in the USA and research ethics boards (REBs) in Canada. Our intent was to see if the forms used by boards reflected common CBPR experience. We drew our sample from affiliated members of the US-based Association of Schools of Public Health and from Canadian universities that offered graduate public health training. This convenience sample (n = 30) was garnered from programs where application forms were available online for download between July and August, 2004. Results show that ethical review forms and guidelines overwhelmingly operate within a biomedical framework that rarely takes into account common CBPR experience. They are primarily focused on the principle of assessing risk to individuals and not to communities and continue to perpetuate the notion that the domain of "knowledge production" is the sole right of academic researchers. Consequently, IRBs and REBs may be unintentionally placing communities at risk by continuing to use procedures inappropriate or unsuitable for CBPR. IRB/REB procedures require a new framework more

  17. Developing a Mental Health eClinic to Improve Access to and Quality of Mental Health Care for Young People: Using Participatory Design as Research Methodologies.

    Science.gov (United States)

    Ospina-Pinillos, Laura; Davenport, Tracey A; Ricci, Cristina S; Milton, Alyssa C; Scott, Elizabeth M; Hickie, Ian B

    2018-05-28

    Each year, many young Australians aged between 16 and 25 years experience a mental health disorder, yet only a small proportion access services and even fewer receive timely and evidence-based treatments. Today, with ever-increasing access to the Internet and use of technology, the potential to provide all young people with access (24 hours a day, 7 days a week) to the support they require to improve their mental health and well-being is promising. The aim of this study was to use participatory design (PD) as research methodologies with end users (young people aged between 16 and 25 years and youth health professionals) and our research team to develop the Mental Health eClinic (a Web-based mental health clinic) to improve timely access to, and better quality, mental health care for young people across Australia. A research and development (R&D) cycle for the codesign and build of the Mental Health eClinic included several iterative PD phases: PD workshops; translation of knowledge and ideas generated during workshops to produce mockups of webpages either as hand-drawn sketches or as wireframes (simple layout of a webpage before visual design and content is added); rapid prototyping; and one-on-one consultations with end users to assess the usability of the alpha build of the Mental Health eClinic. Four PD workshops were held with 28 end users (young people n=18, youth health professionals n=10) and our research team (n=8). Each PD workshop was followed by a knowledge translation session. At the conclusion of this cycle, the alpha prototype was built, and one round of one-on-one end user consultation sessions was conducted (n=6; all new participants, young people n=4, youth health professionals n=2). The R&D cycle revealed the importance of five key components for the Mental Health eClinic: a home page with a visible triage system for those requiring urgent help; a comprehensive online physical and mental health assessment; a detailed dashboard of results; a

  18. Participatory ergonomics: co-developing interventions to reduce the risk of musculoskeletal symptoms in business drivers.

    Science.gov (United States)

    Gyi, Diane; Sang, Katherine; Haslam, Cheryl

    2013-01-01

    The participatory process within four case study organisations with a target population of high mileage business drivers is described. The aim was to work with drivers and their managers to co-develop intervention activities to raise awareness of musculoskeletal health in drivers, including use of the car as a mobile office and manual handling from the car. Train-the-trainer sessions were delivered in each organisation, along with the co-production of training materials. The effectiveness of these activities were evaluated using three sources of data: post-intervention questionnaires, interviews with organisation 'champions' and observations from the research team's diaries. The approach raised management awareness of the risks to drivers and was successful in affecting change, and as such, participatory research should consider the early stages of a project as part of any intervention activities. The research team also reflect on conducting applied longitudinal research in the field. Raising awareness of the risks of musculoskeletal disorders in drivers who work from their vehicle is important. This paper reflects on research in the field and provides guidance on the participatory process and evaluating intervention activities. The participatory process was successful in affecting change at management level.

  19. Medical Surveillance, Continuous Health Promotion and a Participatory Intervention in a Small Company

    Directory of Open Access Journals (Sweden)

    Nicola Magnavita

    2018-04-01

    Full Text Available The workplace is an ideal setting for health promotion. The regular medical examination of workers enables us to screen for numerous diseases, spread good practices and correct lifestyles, and obtain a favourable risk/benefit ratio. The continuous monitoring of the level of workers’ wellbeing using a holistic approach during medical surveillance enables us to promptly identify problems in work organisation and the company climate. Problems of this kind can be adequately managed by using a participatory approach. The aim of this paper is twofold: to signal this way of proceeding with medical surveillance, and to describe an organisational development intervention. Participatory groups were used to improve occupational life in a small company. After intervention we observed a reduction in levels of perceived occupational stress measured with the Effort/Reward Imbalance questionnaire, and an improvement in psychological wellbeing assessed by means of the Goldberg Anxiety/Depression scale. Although the limited size of the sample and the lack of a control group call for a cautious evaluation of this study, the participatory strategy proved to be a useful tool due to its cost-effectiveness.

  20. Children as ethnobotanists: methods and local impact of a participatory research project with children on wild plant gathering in the Grosses Walsertal Biosphere Reserve, Austria.

    Science.gov (United States)

    Grasser, Susanne; Schunko, Christoph; Vogl, Christian R

    2016-10-10

    Ethically sound research in applied ethnobiology should benefit local communities by giving them full access to research processes and results. Participatory research may ensure such access, but there has been little discussion on methodological details of participatory approaches in ethnobiological research. This paper presents and discusses the research processes and methods developed in the course of a three-year research project on wild plant gathering, the involvement of children as co-researchers and the project's indications for local impact. Research was conducted in the Grosses Walsertal Biosphere Reserve, Austria, between 2008 and 2010 in four research phases. In phase 1, 36 freelist interviews with local people and participant observation was conducted. In phase 2 school workshops were held in 14 primary school classes and their 189 children interviewed 506 family members with structured questionnaires. In phase 3, 27 children and two researchers co-produced participatory videos. In phase 4 indications for the impact of the project were investigated with questionnaires from ten children and with participant observation. Children participated in various ways in the research process and the scientific output and local impact of the project was linked to the phases, degrees and methods of children's involvement. Children were increasingly involved in the project, from non-participation to decision-making. Scientific output was generated from participatory and non-participatory activities whereas local impact - on personal, familial, communal and institutional levels - was mainly generated through the participatory involvement of children as interviewers and as co-producers of videos. Creating scientific outputs from participatory video is little developed in ethnobiology, whereas bearing potential. As ethnobotanists and ethnobiologists, if we are truly concerned about the impact and benefits of our research processes and results to local communities, the

  1. [Functions of participatory ergonomics programs in reducing work-related musculoskeletal disorders].

    Science.gov (United States)

    Guo, M J; Liu, J J; Yao, H Y

    2016-08-10

    Work-related musculoskeletal disorders (MSDs) are most commonly seen in all the occupational non-fatal injuries and illnesses for workers, especially those who are involved in labor-intensive industries. Participatory ergonomics is frequently used to prevent musculoskeletal disorders. This paper gives an overview of a historical perspective on the use of participatory ergonomics approach in reducing the health effects of labor-intensive industries. Progress, barriers and facilitators on the organization, implementation and evaluation of participatory ergonomics programs are studied. Participatory ergonomics seems a successful method to develop, prioritize measures to prevent MSDs. Participatory ergonomics can help industries reduce musculoskeletal injuries and disorders, improve workplace condition and promote health conditions of the workers.

  2. Framing Young Childrens Oral Health: A Participatory Action Research Project.

    Directory of Open Access Journals (Sweden)

    Chimere C Collins

    Full Text Available Despite the widespread acknowledgement of the importance of childhood oral health, little progress has been made in preventing early childhood caries. Limited information exists regarding specific daily-life and community-related factors that impede optimal oral hygiene, diet, care, and ultimately oral health for children. We sought to understand what parents of young children consider important and potentially modifiable factors and resources influencing their children's oral health, within the contexts of the family and the community.This qualitative study employed Photovoice among 10 English-speaking parents of infants and toddlers who were clients of an urban WIC clinic in North Carolina. The primary research question was: "What do you consider as important behaviors, as well as family and community resources to prevent cavities among young children?" Five group sessions were conducted and they were recorded, transcribed verbatim and analyzed using qualitative research methodology. Inductive analyses were based on analytical summaries, double-coding, and summary matrices and were done using Atlas.ti.7.5.9 software.Good oral health was associated with avoidance of problems or restorations for the participants. Financial constraints affected healthy food and beverage choices, as well as access to oral health care. Time constraints and occasional frustration related to children's oral hygiene emerged as additional barriers. Establishment of rules/routines and commitment to them was a successful strategy to promote their children's oral health, as well as modeling of older siblings, cooperation among caregivers and peer support. Community programs and organizations, social hubs including playgrounds, grocery stores and social media emerged as promising avenues for gaining support and sharing resources.Low-income parents of young children are faced with daily life struggles that interfere with oral health and care. Financial constraints are

  3. Framing Young Childrens Oral Health: A Participatory Action Research Project.

    Science.gov (United States)

    Collins, Chimere C; Villa-Torres, Laura; Sams, Lattice D; Zeldin, Leslie P; Divaris, Kimon

    2016-01-01

    Despite the widespread acknowledgement of the importance of childhood oral health, little progress has been made in preventing early childhood caries. Limited information exists regarding specific daily-life and community-related factors that impede optimal oral hygiene, diet, care, and ultimately oral health for children. We sought to understand what parents of young children consider important and potentially modifiable factors and resources influencing their children's oral health, within the contexts of the family and the community. This qualitative study employed Photovoice among 10 English-speaking parents of infants and toddlers who were clients of an urban WIC clinic in North Carolina. The primary research question was: "What do you consider as important behaviors, as well as family and community resources to prevent cavities among young children?" Five group sessions were conducted and they were recorded, transcribed verbatim and analyzed using qualitative research methodology. Inductive analyses were based on analytical summaries, double-coding, and summary matrices and were done using Atlas.ti.7.5.9 software. Good oral health was associated with avoidance of problems or restorations for the participants. Financial constraints affected healthy food and beverage choices, as well as access to oral health care. Time constraints and occasional frustration related to children's oral hygiene emerged as additional barriers. Establishment of rules/routines and commitment to them was a successful strategy to promote their children's oral health, as well as modeling of older siblings, cooperation among caregivers and peer support. Community programs and organizations, social hubs including playgrounds, grocery stores and social media emerged as promising avenues for gaining support and sharing resources. Low-income parents of young children are faced with daily life struggles that interfere with oral health and care. Financial constraints are pervasive, but parents

  4. Experiences in Conducting Participatory Communication Research for HIV Prevention Globally: Translating Critical Dialog into Action through Action Media.

    Science.gov (United States)

    Parker, Warren Martin; Becker-Benton, Antje

    2016-01-01

    Developing communication to support health and well-being of vulnerable communities requires a multifaceted understanding of local perspectives of contextual challenges and potentials for change. While participatory research enhances understanding, robust methodologies are necessary to translate emerging concepts into viable communication approaches. Communicators and change agents need to clarify pathways for change, barriers and enablers for change, as well as the role, orientation, and content of communication to support change. While various approaches to participatory action research with vulnerable communities have been developed, there is a dearth of methodologies that address the formulation of communication concepts that can be applied at scale. The Action Media methodology has been refined over a period of two decades, being applied to addressing HIV, related aspects such as gender-based violence, as well as broader issues, such as maternal and child health, sanitation, and malaria in Africa, The Caribbean, and Asia. The approach employs a sequence of interactive sessions involving communicator researchers and participants from one or more communities that face social or health challenges. Sessions focus on understanding audiences through their engagement with these challenges and leading to shaping of relevant communication concepts that can be linked to mobilization for change. The Action Media methodology contributes to processes of shared learning linked to addressing social and health challenges. This includes determining priorities, identifying barriers and facilitators for change, understanding processes of mobilizing knowledge in relation to context, determining appropriate communication approaches, and integrating indigenous language and cultural perspectives into communication concepts. Emerging communication strategies include support to systematic action and long-term mobilization. Communication to address public health concerns is typically

  5. A Participatory Model for Multi-Document Health Information Summarisation

    Directory of Open Access Journals (Sweden)

    Dinithi Nallaperuma

    2017-03-01

    Full Text Available Increasing availability and access to health information has been a paradigm shift in healthcare provision as it empowers both patients and practitioners alike. Besides awareness, significant time savings and process efficiencies can be achieved through effective summarisation of healthcare information. Relevance and accuracy are key concerns when generating summaries for such documents. Despite advances in automated summarisation approaches, the role of participation has not been explored. In this paper, we propose a new model for multi-document health information summarisation that takes into account the role of participation. The updated IS user participation theory was extended to explicate these roles. The proposed model integrates both extractive and abstractive summarisation processes with continuous participatory inputs to each phase. The model was implemented as a client-server application and evaluated by both domain experts and health information consumers. Results from the evaluation phase indicates the model is successful in generating relevant and accurate summaries for diverse audiences.

  6. Improving eye safety in citrus harvest crews through the acceptance of personal protective equipment, community-based participatory research, social marketing, and community health workers.

    Science.gov (United States)

    Tovar-Aguilar, J Antonio; Monaghan, Paul F; Bryant, Carol A; Esposito, Andrew; Wade, Mark; Ruiz, Omar; McDermott, Robert J

    2014-01-01

    For the last 10 years, the Partnership for Citrus Workers Health (PCWH) has been an evidence-based intervention program that promotes the adoption of protective eye safety equipment among Spanish-speaking farmworkers of Florida. At the root of this program is the systematic use of community-based preventive marketing (CBPM) and the training of community health workers (CHWs) among citrus harvester using popular education. CBPM is a model that combines the organizational system of community-based participatory research (CBPR) and the strategies of social marketing. This particular program relied on formative research data using a mixed-methods approach and a multilevel stakeholder analysis that allowed for rapid dissemination, effective increase of personal protective equipment (PPE) usage, and a subsequent impact on adoptive workers and companies. Focus groups, face-to-face interviews, surveys, participant observation, Greco-Latin square, and quasi-experimental tests were implemented. A 20-hour popular education training produced CHWs that translated results of the formative research to potential adopters and also provided first aid skills for eye injuries. Reduction of injuries is not limited to the use of safety glasses, but also to the adoption of timely intervention and regular eye hygiene. Limitations include adoption in only large companies, rapid decline of eye safety glasses without consistent intervention, technological limitations of glasses, and thorough cost-benefit analysis.

  7. Community-based participatory research and user-centered design in a diabetes medication information and decision tool.

    Science.gov (United States)

    Henderson, Vida A; Barr, Kathryn L; An, Lawrence C; Guajardo, Claudia; Newhouse, William; Mase, Rebecca; Heisler, Michele

    2013-01-01

    Together, community-based participatory research (CBPR), user-centered design (UCD), and health information technology (HIT) offer promising approaches to improve health disparities in low-resource settings. This article describes the application of CBPR and UCD principles to the development of iDecide/Decido, an interactive, tailored, web-based diabetes medication education and decision support tool delivered by community health workers (CHWs) to African American and Latino participants with diabetes in Southwest and Eastside Detroit. The decision aid is offered in English or Spanish and is delivered on an iPad in participants' homes. The overlapping principles of CBPR and UCD used to develop iDecide/Decido include a user-focused or community approach, equitable academic and community partnership in all study phases, an iterative development process that relies on input from all stakeholders, and a program experience that is specified, adapted, and implemented with the target community. Collaboration between community members, researchers, and developers is especially evident in the program's design concept, animations, pictographs, issue cards, goal setting, tailoring, and additional CHW tools. The principles of CBPR and UCD can be successfully applied in developing health information tools that are easy to use and understand, interactive, and target health disparities.

  8. Involving People with Lived Experience of Homelessness in Electronic Health Records Research

    Directory of Open Access Journals (Sweden)

    Serena Luchenski

    2017-04-01

    Using a participatory and dynamic approach to involve people with lived experience of homelessness and exclusion is an effective public engagement methodology for complex topics such as EHR research and data linkage. Information provided in the workshop was useful for interpreting findings, identifying strengths and gaps in health and social services, and developing research and practice recommendations.

  9. Community-based participatory research and integrated knowledge translation: advancing the co-creation of knowledge.

    Science.gov (United States)

    Jull, Janet; Giles, Audrey; Graham, Ian D

    2017-12-19

    Better use of research evidence (one form of "knowledge") in health systems requires partnerships between researchers and those who contend with the real-world needs and constraints of health systems. Community-based participatory research (CBPR) and integrated knowledge translation (IKT) are research approaches that emphasize the importance of creating partnerships between researchers and the people for whom the research is ultimately meant to be of use ("knowledge users"). There exist poor understandings of the ways in which these approaches converge and diverge. Better understanding of the similarities and differences between CBPR and IKT will enable researchers to use these approaches appropriately and to leverage best practices and knowledge from each. The co-creation of knowledge conveys promise of significant social impacts, and further understandings of how to engage and involve knowledge users in research are needed. We examine the histories and traditions of CBPR and IKT, as well as their points of convergence and divergence. We critically evaluate the ways in which both have the potential to contribute to the development and integration of knowledge in health systems. As distinct research traditions, the underlying drivers and rationale for CBPR and IKT have similarities and differences across the areas of motivation, social location, and ethics; nevertheless, the practices of CBPR and IKT converge upon a common aim: the co-creation of knowledge that is the result of knowledge user and researcher expertise. We argue that while CBPR and IKT both have the potential to contribute evidence to implementation science and practices for collaborative research, clarity for the purpose of the research-social change or application-is a critical feature in the selection of an appropriate collaborative approach to build knowledge. CBPR and IKT bring distinct strengths to a common aim: to foster democratic processes in the co-creation of knowledge. As research

  10. Ex-ante participatory research proposal assessment conducted in Southern Togo

    Directory of Open Access Journals (Sweden)

    V. Deffo

    2011-01-01

    Full Text Available This study was conducted to showcase a participatory method for assessing technical options in Southern Togo. The aim was to address farmers’ needs with respect to soil fertility problems in situations involving mixed crop-livestock farming systems. In collaboration with various stakeholders, the scientists thus assessed the potential for adopting a crop association involving maize for food (seed and fodder (straw, i.e. a mixed function plant, and Mucuna pruriens, i.e. a long-cycle legume that is cropped to produce fodder and enhance soil fertility. The chemically fertilized crop association is here referred to as MME. Participatory action research (PAR analytical tools were implemented in the four-phase method used. The first phase included an overall description of the entire study region to identify representative sites based on published information and exploratory interviews. In the second phase, the diversity of farmers was characterized through interviews with resource people at the selected sites. The third phase involved participatory selection of a range of technical options that included the MME association as well as local practices with features similar to this association, and alternative research proposals to enhance soil fertility and ensure the production of sufficient fodder to feed livestock. This selection was carried out by farmers chosen as being representative of their diversity. They were asked to rank—using notes, or pebbles because of the high illiteracy level—the different technical options presented during visits to the test plots or using visual aids. The fourth phase included an assessment of farmers’ comments on the perceived effects of the different options on agropastoral resource management (water, soil, biodiversity, their acceptability or cost-effectiveness relative to the labor cost. This method was applied in three villages in southern Togo. Six main farmer categories were identified in these

  11. Community-University Research Partnerships for Workers' and Environmental Health in Campinas Brazil

    Science.gov (United States)

    Monteiro, Maria Ines; Siqueira, Carlos Eduardo; Filho, Heleno Rodrigues Correa

    2011-01-01

    Three partnerships between the University of Campinas, community, and public health care services are discussed in this article. A theoretical framework underpins the critical reviews of their accomplishments following criteria proposed by scholars of community-university partnerships and community-based participatory research. The article…

  12. Participatory action research: involving students in parent education.

    Science.gov (United States)

    Fowler, Cathrine; Wu, Cynthia; Lam, Winsome

    2014-01-01

    Competition for scarce clinical placements has increased requiring new and innovative models to be developed to meet the growing need. A participatory action research project was used to provide a community nursing clinical experience of involvement in parent education. Nine Hong Kong nursing students self-selected to participate in the project to implement a parenting program called Parenting Young Children in a Digital World. Three project cycles were used: needs identification, skills development and program implementation. Students were fully involved in each cycle's planning, action and reflection phase. Qualitative and quantitative data were collected to inform the project. The overall outcome of the project was the provision of a rich and viable clinical placement experience that created significant learning opportunities for the students and researchers. This paper will explore the student's participation in this PAR project as an innovative clinical practice opportunity. Copyright © 2013 Elsevier Ltd. All rights reserved.

  13. Extending Participatory Sensing to Personal Exposure Using Microscopic Land Use Regression Models

    Directory of Open Access Journals (Sweden)

    Luc Dekoninck

    2017-05-01

    Full Text Available Personal exposure is sensitive to the personal features and behavior of the individual, and including interpersonal variability will improve the health and quality of life evaluations. Participatory sensing assesses the spatial and temporal variability of environmental indicators and is used to quantify this interpersonal variability. Transferring the participatory sensing information to a specific study population is a basic requirement for epidemiological studies in the near future. We propose a methodology to reduce the void between participatory sensing and health research. Instantaneous microscopic land-use regression modeling (µLUR is an innovative approach. Data science techniques extract the activity-specific and route-sensitive spatiotemporal variability from the data. A data workflow to prepare and apply µLUR models to any mobile population is presented. The µLUR technique and data workflow are illustrated with models for exposure to traffic related Black Carbon. The example µLURs are available for three micro-environments; bicycle, in-vehicle, and indoor. Instantaneous noise assessments supply instantaneous traffic information to the µLURs. The activity specific models are combined into an instantaneous personal exposure model for Black Carbon. An independent external validation reached a correlation of 0.65. The µLURs can be applied to simulated behavioral patterns of individuals in epidemiological cohorts for advanced health and policy research.

  14. For a public sociology on participatory democracy. Reflexive feedback on research conducted in an association

    Directory of Open Access Journals (Sweden)

    Nez, Héloïse

    2012-12-01

    Full Text Available This paper develops a reflexive approach on the relations between research and action in works on participatory democracy; a topic in which bridges are numerous between academic, political and activist fields. It aims at analyzing the impact of the close links between sociologists and actors on the methods and results of research and, reciprocally, the role of sociology in developing participatory practices. Relying on Michael Burawoy’s reflection on “public sociology”, our own research experience in an association, and other research studies conducted in Europe, we define five ways sociologists carry out research on participatory democracy in collaboration with the actors. Beyond a reflection on the social reception of our research, the challenge is to develop a critical and committed sociology on participatory democracy with a view to contributing to the political debate and public action from a critical viewpoint.

    Este artículo desarrolla un enfoque reflexivo sobre las relaciones entre investigación y acción en los trabajos sobre democracia participativa, una temática en la que los vínculos entre los campos académicos, políticos y militantes son numerosos. El objetivo es analizar el impacto de las estrechas relaciones entre sociólogos y actores sociales en los métodos y resultados de la investigación y, al mismo tiempo, el papel de la sociología en el desarrollo de las prácticas participativas. Apoyándose en la reflexión de Michael Burawoy sobre la “sociología pública”, en nuestra propia experiencia de investigación en una asociación y en otras investigaciones en Europa, se definen cinco posturas de sociólogos que trabajan en colaboración con los actores sociales sobre la democracia participativa. Más allá de una reflexión sobre la receptividad social de nuestras investigaciones, el desafío consiste en desarrollar una sociología a la vez crítica y comprometida sobre la democracia participativa, para

  15. Worker Preferences for a Mental Health App Within Male-Dominated Industries: Participatory Study.

    Science.gov (United States)

    Peters, Dorian; Deady, Mark; Glozier, Nick; Harvey, Samuel; Calvo, Rafael A

    2018-04-25

    Men are less likely to seek help for mental health problems, possibly because of stigma imposed by cultural masculine norms. These tendencies may be amplified within male-dominated workplaces such as the emergency services or transport industries. Mobile apps present a promising way to provide access to mental health support. However, little is known about the kinds of mental health technologies men would be willing to engage with, and no app can be effective if the intended users do not engage with it. The goal of this participatory user research study was to explore the perceptions, preferences, and ideas of workers in male-dominated workplaces to define requirements for a mental health app that would be engaging and effective at improving psychological well-being. Workers from male-dominated workplaces in rural, suburban, and urban locations took part in an exploratory qualitative study involving participatory workshops designed to elicit their perspectives and preferences for mental health support and the design of an app for mental health. Participants generated a number of artifacts (including draft screen designs and promotional material) designed to reify their perceptions, tacit knowledge, and ideas. A total of 60 workers aged between 26 and 65 years, 92% (55/60) male, from male-dominated workplaces in rural (16/60, 27%), suburban (14/60, 23%), and urban (30/60, 50%) locations participated in one of the 6 workshops, resulting in 49 unique feature ideas and 81 participant-generated artifacts. Thematic analysis resulted in a set of feature, language, and style preferences, as well as characteristics considered important by participants for a mental health app. The term "mental health" was highly stigmatized and disliked by participants. Tools including a mood tracker, self-assessment, and mood-fix tool were highly valued, and app characteristics such as brevity of interactions, minimal on-screen text, and a solutions-oriented approach were considered

  16. Narratives of Adolescent Girls Journeying via Feminist Participatory Action Research through the Aftermath of Divorce

    Science.gov (United States)

    Botha, Carolina S.; Hay, Johnnie

    2016-01-01

    This article documents the (often counter-normative) narrative journey of four South African adolescent girls whose biological parents had divorced--and one (or both) parent(s) remarried. Through purposive sampling within a qualitative research paradigm of feminist participatory action research, they were supported in group context by the primary…

  17. What knowledge counts? Insights from an action research project using participatory video with grassroots innovation experiences

    Energy Technology Data Exchange (ETDEWEB)

    Boni, A.; Leivas, M.; Talon, A.; De La Fuente, T.; Pellicer-Sifres, V.; Belda-Miquel, S.; Lopez-Fogues, A.; Arias, B

    2016-07-01

    This paper presents a contribution on a participatory action-research process using Participatory Video (PV) methodology. Duringsix months, a group of 6 facilitators and 9 members of two grassroots innovation initiatives (Solar Dómada and Fuel Poverty Group) took part of the process and produced two videos during a five-st age PV process, from initial definition and planning to public screening and debate of the videos. We present some insightrs from that research using an original framework developed to analyze PV process: the eParc Cube. This framework examines the interaction between knowledge production, participation and communicative spaces that happen during PV. We conclude reflecting on the social relevance of that kind of research considering the impact among of the coresearchers of both process and products. (Author)

  18. From Permission to Partnership: Participatory Research to Engage School Personnel in Systems Change

    Science.gov (United States)

    Blitz, Lisa V.; Mulcahy, Candace A.

    2017-01-01

    Data collected from teachers in a racially diverse, high-poverty high school were used to inform the initial steps in developing a school-university partnership to create a culturally responsive trauma-informed community school. The project utilized community-based participatory research to explore sensitive areas of school system functioning.…

  19. Generating Knowledge in Popular Education: From Participatory Research to the Systematization of Experiences

    OpenAIRE

    Torres Carrillo, Alfonso

    2010-01-01

    "The article presents a revision of how popular education has integrated into its practices and reflections on participatory research. After a presentation of popular education as an educational movement and pedagogical current, the article develops a historical reconstruction of the relationship between these two, while offering a critique of the legacy and challenges of this kind of double education: research with an emancipatory perspective. The article ends focusing on t...

  20. Designing adverse event forms for real-world reporting: participatory research in Uganda.

    Directory of Open Access Journals (Sweden)

    Emma C Davies

    Full Text Available The wide-scale roll-out of artemisinin combination therapies (ACTs for the treatment of malaria should be accompanied by continued surveillance of their safety. Post-marketing pharmacovigilance (PV relies on adverse event (AE reporting by clinicians, but as a large proportion of treatments are provided by non-clinicians in low-resource settings, the effectiveness of such PV systems is limited. To facilitate reporting, AE forms should be easily completed; however, most are challenging for lower-level health workers and non-clinicians to complete. Through participatory research, we sought to develop user-friendly AE report forms to capture information on events associated with ACTs.Following situation analysis, we undertook workshops with community medicine distributors and health workers in Jinja, Uganda, to develop a reporting form based on experiences and needs of users, and communication and visual perception principles. Participants gave feedback for revisions of subsequent versions. We then conducted 8 pretesting sessions with 77 potential end users to test and refine passive and active versions of the form.The development process resulted in a form that included a pictorial storyboard to communicate the rationale for the information needed and facilitate rapport between the reporter and the respondent, and a diary format to record the drug administration and event details in chronological relation to each other. Successive rounds of pretesting used qualitative and quantitative feedback to refine the form, with the final round showing over 80% of the form completed correctly by potential end users.We developed novel AE report forms that can be used by non-clinicians to capture pharmacovigilance data for anti-malarial drugs. The participatory approach was effective for developing forms that are intuitive for reporters, and motivating for respondents. The forms, or their key components, could be adapted for use in other low-literacy settings

  1. Designing adverse event forms for real-world reporting: participatory research in Uganda.

    Science.gov (United States)

    Davies, Emma C; Chandler, Clare I R; Innocent, Simeon H S; Kalumuna, Charles; Terlouw, Dianne J; Lalloo, David G; Staedke, Sarah G; Haaland, Ane

    2012-01-01

    The wide-scale roll-out of artemisinin combination therapies (ACTs) for the treatment of malaria should be accompanied by continued surveillance of their safety. Post-marketing pharmacovigilance (PV) relies on adverse event (AE) reporting by clinicians, but as a large proportion of treatments are provided by non-clinicians in low-resource settings, the effectiveness of such PV systems is limited. To facilitate reporting, AE forms should be easily completed; however, most are challenging for lower-level health workers and non-clinicians to complete. Through participatory research, we sought to develop user-friendly AE report forms to capture information on events associated with ACTs.Following situation analysis, we undertook workshops with community medicine distributors and health workers in Jinja, Uganda, to develop a reporting form based on experiences and needs of users, and communication and visual perception principles. Participants gave feedback for revisions of subsequent versions. We then conducted 8 pretesting sessions with 77 potential end users to test and refine passive and active versions of the form.The development process resulted in a form that included a pictorial storyboard to communicate the rationale for the information needed and facilitate rapport between the reporter and the respondent, and a diary format to record the drug administration and event details in chronological relation to each other. Successive rounds of pretesting used qualitative and quantitative feedback to refine the form, with the final round showing over 80% of the form completed correctly by potential end users.We developed novel AE report forms that can be used by non-clinicians to capture pharmacovigilance data for anti-malarial drugs. The participatory approach was effective for developing forms that are intuitive for reporters, and motivating for respondents. The forms, or their key components, could be adapted for use in other low-literacy settings to improve quality

  2. Advances in participatory occupational health aimed at good practices in small enterprises and the informal sector.

    Science.gov (United States)

    Kogi, Kazutaka

    2006-01-01

    Participatory programmes for occupational risk reduction are gaining importance particularly in small workplaces in both industrially developing and developed countries. To discuss the types of effective support, participatory steps commonly seen in our "work improvement-Asia" network are reviewed. The review covered training programmes for small enterprises, farmers, home workers and trade union members. Participatory steps commonly focusing on low-cost good practices locally achieved have led to concrete improvements in multiple technical areas including materials handling, workstation ergonomics, physical environment and work organization. These steps take advantage of positive features of small workplaces in two distinct ways. First, local key persons are ready to accept local good practices conveyed through personal, informal approaches. Second, workers and farmers are capable of understanding technical problems affecting routine work and taking flexible actions leading to solving them. This process is facilitated by the use of locally adjusted training tools such as local good examples, action checklists and group work methods. It is suggested that participatory occupational health programmes can work in small workplaces when they utilize low-cost good practices in a flexible manner. Networking of these positive experiences is essential.

  3. Participative mental health consumer research for improving physical health care: An integrative review.

    Science.gov (United States)

    Happell, Brenda; Ewart, Stephanie B; Platania-Phung, Chris; Stanton, Robert

    2016-10-01

    People with mental illness have a significantly lower life expectancy and higher rates of chronic physical illnesses than the general population. Health care system reform to improve access and quality is greatly needed to address this inequity. The inclusion of consumers of mental health services as co-investigators in research is likely to enhance service reform. In light of this, the current paper reviews mental health consumer focussed research conducted to date, addressing the neglect of physical health in mental health care and initiatives with the aim of improving physical health care. The international literature on physical healthcare in the context of mental health services was searched for articles, including mental health consumers in research roles, via Medline, CINAHL and Google Scholar, in October 2015. Four studies where mental health consumers participated as researchers were identified. Three studies involved qualitative research on barriers and facilitators to physical health care access, and a fourth study on developing technologies for more effective communication between GPs and patients. This review found that participatory mental health consumer research in physical health care reform has only become visible in the academic literature in 2015. Heightened consideration of mental health consumer participation in research is required by health care providers and researchers. Mental health nurses can provide leadership in increasing mental health consumer research on integrated care directed towards reducing the health gap between people with and without mental illness. © 2016 Australian College of Mental Health Nurses Inc.

  4. Participatory Design

    DEFF Research Database (Denmark)

    Robertson, Toni; Simonsen, Jesper

    2012-01-01

    focus of later chapters. The target audience is identified, and the structure of the book explained. A short description of each chapter highlights its particular contributions as well as the associated challenges facing designers and researchers engaged in participatory approaches. The chapter...

  5. Exploring participatory behaviour of disability benefit claimants from an insurance physician's perspective.

    Science.gov (United States)

    Sjobbema, Christiaan; van der Mei, Sijrike; Cornelius, Bert; van der Klink, Jac; Brouwer, Sandra

    2018-08-01

    In the Dutch social security system, insurance physicians (IPs) assess participatory behaviour as part of the overall disability claim assessment. This study aims to explore the views and opinions of IPs regarding participatory behaviour as well as factors related to inadequate participatory behaviour, and to incorporate these factors in the International Classification of Functioning, Disability and Health (ICF) biopsychosocial framework. This qualitative study collected data by means of open-ended questions in 10 meetings of local peer review groups (PRGs) which included a total of 78 IPs of the Dutch Social Security Institute. In addition, a concluding discussion meeting with 8 IPs was organized. After qualitative data analyses, four major themes emerged: (1) participation as an outcome, (2) efforts of disability benefit claimants in the process of participatory behaviour, (3) beliefs of disability benefit claimants concerning participation, and (4) recovery behaviour. Identified factors of inadequate participatory behaviour covered all ICF domains, including activities, environmental, and personal factors, next to factors related to health condition and body functions or structures. Outcomes of the discussion meeting indicated the impossibility of formulating general applicable criteria for quantifying and qualifying participatory behaviour. Views of IPs on disability benefit claimants' (in)adequate participatory behaviour reflect a broad biopsychosocial perspective. IPs adopt a nuanced tailor-made approach during assessment of individual disability benefit claimants' participatory behaviour and related expected activities aimed at recovery of health and RTW. Implications for Rehabilitation Within a biopsychosocial perspective, it is not possible to formulate general criteria for the assessment of participatory behaviour for each unique case. Individual disability benefit claimant characteristics and circumstances are taken into account. To optimize the return

  6. Eliciting ethical and social values in health technology assessment: A participatory approach.

    Science.gov (United States)

    Bombard, Yvonne; Abelson, Julia; Simeonov, Dorina; Gauvin, Francois-Pierre

    2011-07-01

    Despite a growing consensus that ethical and social values should be addressed in health technology assessment (HTA) processes, there exist a variety of methods for doing so. There is growing interest in involving citizens in policy development to ensure that decisions are legitimate, and reflect the broad social values of the public. We sought to bring these issues together by employing a participatory approach to elicit ethical and social values in HTA. Our primary objective was to elicit a set of ethical and social values from citizens that could be used to guide Ontario's HTA evidentiary review and appraisal process. A secondary objective was to explore the feasibility of using participatory approaches to elicit these values. A 14-person Citizens' Reference Panel on Health Technologies was established to provide input to the Ontario Health Technology Advisory Committee in developing its recommendations. A mixed methods approach was used where informed, deliberative discussions were combined with pre- and post-questionnaires, which assessed the relative importance of various ethical and social values as well as their stability over time. Over the course of five meetings, panel members progressed toward the identification of a set of core values -universal access, choice and quality care. These values were consistently prioritized as the core values that should be considered in the evaluation of health technologies and ensuing recommendations. Sustained and deliberative methods, like a citizens' panel, offer a promising approach for eliciting ethical and social values into HTA. Copyright © 2011 Elsevier Ltd. All rights reserved.

  7. Protocol for a qualitative study of knowledge translation in a participatory research project

    OpenAIRE

    Lillehagen, Ida; V?llestad, Nina; Heggen, Kristin; Engebretsen, Eivind

    2013-01-01

    Introduction: In this article, we present a methodological design for qualitative investigation of knowledge translation (KT) between participants in a participatory research project. In spite of a vast expansion of conceptual models and frameworks for conducting KT between research and practice, few models emphasise how KTs come about. Better understanding of the actions and activities involved in a KT process is important for promoting diffusion of knowledge and improving patient care. T...

  8. Participatory Communication

    DEFF Research Database (Denmark)

    Tufte, Thomas

    This user guide on participatory communication aims to answer the following questions: What do we mean when we say participatory communication? What are the practical implications of working with participatory communication strategies in development and social change processes? What practical exp......, tools, and experiences on how to implement participatory communications strategies. It is targeted toward government officials, World Bank staff, develompent workers in the field, and civil society....

  9. Community capacity building and sustainability: outcomes of community-based participatory research.

    Science.gov (United States)

    Hacker, Karen; Tendulkar, Shalini A; Rideout, Catlin; Bhuiya, Nazmim; Trinh-Shevrin, Chau; Savage, Clara P; Grullon, Milagro; Strelnick, Hal; Leung, Carolyn; DiGirolamo, Ann

    2012-01-01

    For communities, the value of community-based participatory research (CBPR) is often manifested in the outcomes of increased capacity and sustainable adoption of evidence-based practices for social change. Educational opportunities that promote discourse between community and academic partners can help to advance CBPR and better define these outcomes. This paper describes a community-academic conference to develop shared definitions of community capacity building and sustainability related to CBPR and to identify obstacles and facilitators to both. "Taking It to the Curbside: Engaging Communities to Create Sustainable Change for Health" was planned by five Clinical Translational Science Institutes and four community organizations. After a keynote presentation, breakout groups of community and academic members met to define community capacity building and sustainability, and to identify facilitators and barriers to achieving both. Groups were facilitated by researcher-community partner teams and conversations were recorded and transcribed. Qualitative analysis for thematic content was conducted by a subset of the planning committee. Important findings included learning that (1) the concepts of capacity and sustainability were considered interconnected; (2) partnership was perceived as both a facilitator and an outcome of CBPR; (3) sustainability was linked to "transfer of knowledge" from one generation to another within a community; and (4) capacity and sustainability were enhanced when goals were shared and health outcomes were achieved. Community capacity building and sustainability are key outcomes of CBPR for communities. Co-learning opportunities that engage and mutually educate both community members and academics can be useful strategies for identifying meaningful strategies to achieve these outcomes.

  10. An evaluation of the interaction of place and community-based participatory research as a research methodology in the implementation of a sexually transmitted infection intervention for Greenlandic youth.

    Science.gov (United States)

    Rink, Elizabeth

    2016-01-01

    Newly emerging research suggests that the actual physical location of a study and the geographic context in which a study is implemented influences the types of research methods most appropriate to use in a study as well as the study's research outcomes. This article presents a reflection on the extent to which place influenced the use of community-based participatory research (CBPR) as a research methodology in the implementation of an intervention to address sexually transmitted infections in Greenland. An evaluation of the interaction between place and CBPR suggests that the physicality of place influenced the intervention's successes and challenges. Future research that uses CBPR as a research methodology in sexual and reproductive health research in the Arctic warrants situating the research design, implementation and outcomes within the context of place.

  11. The impact of participatory and non-participatory evaluations on ...

    African Journals Online (AJOL)

    ... in terms of evaluation, a participatory methodology better enabled the internalisation of those objectives, through activities such as focus group discussions. Keywords: Africa, behaviour, community empowerment, HIV/AIDS interventions, monitoring and evaluation. African Journal of AIDS Research 2005, 4(2): 103–113 ...

  12. Research workshop to research work: initial steps in establishing health research systems on Malaita, Solomon Islands

    Directory of Open Access Journals (Sweden)

    Kekuabata Esau

    2010-10-01

    Full Text Available Abstract Introduction Atoifi Adventist Hospital is a 90 bed general hospital in East Kwaio, Malaita, Solomon Islands providing services to the population of subsistence villagers of the region. Health professionals at the hospital and attached College of Nursing have considerable human capacity and willingness to undertake health research. However they are constrained by limited research experience, training opportunities, research systems, physical infrastructure and access to resources. This brief commentary describes an 'Introduction to Health Research' workshop delivered at Atoifi Adventist Hospital in September 2009 and efforts to move from 'research workshop' to 'research work'. The Approach Using a participatory-action research approach underpinned by decolonising methodologies, staff from Atoifi Adventist Hospital and James Cook University (Queensland, Australia collaboratively designed, implemented and evaluated a health research workshop. Basic health research principles and methods were presented using active learning methodologies. Following the workshop, Atoifi Adventist Hospital and Atoifi College of Nursing staff, other professionals and community members reported an increased awareness and understanding of health research. The formation of a local Research Committee, improved ethics review procedures and the identification of local research mentors followed the week long workshop. The workshop has acted as a catalyst for research activity, increasing structural and human resource capacity for local health professionals and community leaders to engage in research. Discussion and Conclusions Participants from a variety of educational backgrounds participated in, and received benefit from, a responsive, culturally and linguistically accessible health research workshop. Improving health research systems at a remote hospital and aligning these with local and national research agendas is establishing a base to strengthen public health

  13. Research Ethics Committees and Participatory Action Research With Young People: The Politics of Voice.

    Science.gov (United States)

    Yanar, Zeynep M; Fazli, Mehria; Rahman, Jahanara; Farthing, Rys

    2016-04-01

    Participatory action research (PAR) is a methodological approach that seeks to maximize the participation of people whose lives it researches. It is underpinned by an ethical concern to research "with" people, rather than "on" people. However, this ethical approach to research is often, paradoxically, problematized by universities' research ethics committees (RECs). This article explores one site of tension between PAR and RECs-the requirement for anonymity for below 18-year-olds. It explores this tension by exploring a case study of a peer-to-peer research project undertaken by young women in East London, and using our own experiences and perspectives, it argues that anonymity can be unjust, disempowering, and unnecessary, and can reduce "pride." Without wanting to develop specific recommendations, given the limited scope of our case study, this article uses firsthand experiences to add weight to the broader discussions calling for a critical rethink of REC guidelines. © The Author(s) 2016.

  14. Knowledge mobilisation for policy development: implementing systems approaches through participatory dynamic simulation modelling.

    Science.gov (United States)

    Freebairn, Louise; Rychetnik, Lucie; Atkinson, Jo-An; Kelly, Paul; McDonnell, Geoff; Roberts, Nick; Whittall, Christine; Redman, Sally

    2017-10-02

    Evidence-based decision-making is an important foundation for health policy and service planning decisions, yet there remain challenges in ensuring that the many forms of available evidence are considered when decisions are being made. Mobilising knowledge for policy and practice is an emergent process, and one that is highly relational, often messy and profoundly context dependent. Systems approaches, such as dynamic simulation modelling can be used to examine both complex health issues and the context in which they are embedded, and to develop decision support tools. This paper reports on the novel use of participatory simulation modelling as a knowledge mobilisation tool in Australian real-world policy settings. We describe how this approach combined systems science methodology and some of the core elements of knowledge mobilisation best practice. We describe the strategies adopted in three case studies to address both technical and socio-political issues, and compile the experiential lessons derived. Finally, we consider the implications of these knowledge mobilisation case studies and provide evidence for the feasibility of this approach in policy development settings. Participatory dynamic simulation modelling builds on contemporary knowledge mobilisation approaches for health stakeholders to collaborate and explore policy and health service scenarios for priority public health topics. The participatory methods place the decision-maker at the centre of the process and embed deliberative methods and co-production of knowledge. The simulation models function as health policy and programme dynamic decision support tools that integrate diverse forms of evidence, including research evidence, expert knowledge and localised contextual information. Further research is underway to determine the impact of these methods on health service decision-making.

  15. Ethical challenges and opportunities for nurses in HIV and AIDS community-based participatory research in Jamaica

    NARCIS (Netherlands)

    Davison, C.M.; Kahwa, E.; Atkinson, U.; Hepburn-Brown, C.; Aiken, J.; Dawkins, P.; Rae, T.; Edwards, N.; Roelofs, S.; MacFarlane, D.

    2013-01-01

    As part of a multinational program of research, we undertook a community-based participatory research project in Jamaica to strengthen nurses' engagement in HIV and AIDS policy. Three leadership hubs were purposefully convened and included small groups of people (6-10) from diverse HIV and AIDS

  16. Participatory Design in the Developing World

    DEFF Research Database (Denmark)

    Messeter, Jörn; Claassen, Hester; Finnan, Craig

    processes. Arguably, the appropriation of participatory design approaches and methods to developing world settings is an important priority in research cooperation between Nordic and Southern African universities. This work presents issues and opportunities for introducing participatory design in a South...... was explored in a socially challenged suburb in the Cape Flats area of Cape Town. Issues on appropriation of strategies and methods for participation are discussed, and directions for further research in the field are identified....

  17. Ethical Dilemmas in Community-Based Participatory Research: Recommendations for Institutional Review Boards

    Science.gov (United States)

    Travers, Robb; Guta, Adrian; McDonald, Sean; Meagher, Aileen

    2007-01-01

    National and international codes of research conduct have been established in most industrialized nations to ensure greater adherence to ethical research practices. Despite these safeguards, however, traditional research approaches often continue to stigmatize marginalized and vulnerable communities. Community-based participatory research (CBPR) has evolved as an effective new research paradigm that attempts to make research a more inclusive and democratic process by fostering the development of partnerships between communities and academics to address community-relevant research priorities. As such, it attempts to redress ethical concerns that have emerged out of more traditional paradigms. Nevertheless, new and emerging ethical dilemmas are commonly associated with CBPR and are rarely addressed in traditional ethical reviews. We conducted a content analysis of forms and guidelines commonly used by institutional review boards (IRBs) in the USA and research ethics boards (REBs) in Canada. Our intent was to see if the forms used by boards reflected common CBPR experience. We drew our sample from affiliated members of the US-based Association of Schools of Public Health and from Canadian universities that offered graduate public health training. This convenience sample (n = 30) was garnered from programs where application forms were available online for download between July and August, 2004. Results show that ethical review forms and guidelines overwhelmingly operate within a biomedical framework that rarely takes into account common CBPR experience. They are primarily focused on the principle of assessing risk to individuals and not to communities and continue to perpetuate the notion that the domain of “knowledge production” is the sole right of academic researchers. Consequently, IRBs and REBs may be unintentionally placing communities at risk by continuing to use procedures inappropriate or unsuitable for CBPR. IRB/REB procedures require a new framework

  18. Scandinavian Participatory Design - Beyond Design, Beyond Scandinavia

    DEFF Research Database (Denmark)

    Zander, Pär-Ola; Georgsen, Marianne; Nyvang, Tom

    2011-01-01

    This paper presents a stream of research that is relevant for development research generally and also in South Asia, but has hitherto remained outside the discourse of mainstream development research. It goes under the name "Participatory design", referring not only generally to participatory...... approaches, of which there are many in development research, but to a specific body of work that stems from Scandinavia. Within the research fields relating to design of ICT systems the Scandinavian countries have a rich history of incorporating disadvantaged groups in societies. This paper argues...

  19. Cultural background, gender, and institutional status have an effect on the evaluation of multi-disciplinary participatory action research.

    Science.gov (United States)

    Graef, Frieder; Sieber, Stefan

    2018-01-01

    Research and development increasingly apply participatory approaches that involve both stakeholders and scientists. This article presents an evaluation of German and Tanzanian researchers' perceptions during their activities as part of a large interdisciplinary research project in Tanzania. The project focused on prioritizing and implementing food-securing upgrading strategies across the components of rural food value chains. The participants involved during the course of the project were asked to provide feedback on 10 different research steps and to evaluate eight core features related to the functioning and potential shortcomings of the project. The study discriminated among evaluation differences linked to culture, gender, and institutional status. Perceptions differed between Tanzanian and German participants depending on the type and complexity of the participatory research steps undertaken and the intensity of stakeholder participation. There were differences in perception linked to gender and hierarchical status; however, those differences were not as concise and significant as those linked to nationality. These findings indicate that participatory action research of this nature requires more targeted strategies and planning tailored to the type of activity. Such planning would result in more efficient and satisfactory communication, close collaboration, and mutual feedback to avoid conflicts and other problems. We further conclude that it would be advisable to carefully incorporate training on these aspects into future project designs.

  20. Community-based participatory research projects and policy engagement to protect environmental health on St Lawrence Island, Alaska

    Directory of Open Access Journals (Sweden)

    Pamela K. Miller

    2013-08-01

    Full Text Available Objectives . This article synthesizes discussion of collaborative research results, interventions and policy engagement for St Lawrence Island (SLI, Alaska, during the years 2000–2012. Methods . As part of on-going community-based participatory research (CBPR studies on SLI, 5 discrete exposure-assessment projects were conducted: (a a biomonitoring study of human blood serum; (b–d 3 investigations of levels of contaminants in environmental media at an abandoned military site at Northeast Cape – using sediment cores and plants, semi-permeable membrane devices and blackfish, respectively; and (e a study of traditional foods. Results . Blood serum in residents of SLI showed elevated levels of polychlorinated biphenyls (PCBs with higher levels among those exposed to the military site at Northeast Cape, an important traditional subsistence-use area. Environmental studies at the military site demonstrated that the site is a continuing source of PCBs to a major watershed, and that clean-up operations at the military site generated PCB-contaminated dust on plants in the region. Important traditional foods eaten by the people of SLI showed elevated concentrations of PCBs, which are primarily derived from the long-range transport of persistent pollutants that are transported by atmospheric and marine currents from more southerly latitudes to the north. Interventions . An important task for all CBPR projects is to conduct intervention strategies as needed in response to research results. Because of the findings of the CBPR projects on SLI, the CBPR team and the people of the Island are actively engaging in interventions to ensure cleanup of the formerly used military sites; reform chemicals policy on a national level; and eliminate persistent pollutants internationally. The goal is to make the Island and other northern/Arctic communities safe for themselves and future generations. Conclusions . As part of the CBPR projects conducted from 2000 to 2012

  1. Learning from participatory design projects across industries

    DEFF Research Database (Denmark)

    Broberg, Ole; Souza da Conceição, Carolina

    2017-01-01

    Summative Statement: A preliminary framework for participatory design projects (PDP) was developed based on a retrospective analysis of five PDPs across different industries. The framework may serve as a guidance for planning and conducting PDPs. Problem statement: A growing number of experiences...... with participatory design or participatory ergonomics projects have been gained within the field of macro-ergonomics. It is suggested that the Participatory Ergonomics Framework (PEF) validated by Haines et al. (2002) needs to be updated based on these experiences and hence more focussed on design activities....... Research Objective / Question: The objective of this study was to update and design-orient the PEF based on experiences with PDPs within the last ten years. Methodology: Five participatory design projects across different industries were systematically analyzed and compared in order to develop a framework...

  2. Application of Participatory Learning and Action Methods in Educational Technology Research A Rural Bangladeshi Case

    DEFF Research Database (Denmark)

    Khalid, Md. Saifuddin; Nyvang, Tom

    2013-01-01

    This chapter examines barriers and methods to identify barriers to educational technology in a rural technical vocational education and training institute in Bangladesh. It also examines how the application of participatory learning and action methods can provide information for barrier research ...

  3. The Impact of Narrative and Participatory Drama on Social Interactions, Attitudes, and Efficacy around Health and Environmental Issues in Malawi

    Science.gov (United States)

    Young, Carrie E.

    2017-01-01

    This dissertation explores the role of creative, participatory methods of communication in response to the impacts of climate change and other environmental and social pressures in Sub- Saharan Africa. Specifically, the research seeks to understand the extent to which narrative and participatory drama influence social interaction, attitudes, and…

  4. Focus Section on Design Anthropology in Participatory Design

    DEFF Research Database (Denmark)

    2015-01-01

    This focus section explores the opportunities of design anthropology in participatory design as an approach to research and design in an increasingly global and digital world. Traditionally, ethnography has been used in Participatory design to research real-life contexts and challenges, and as ways...... to involve people in defining user-needs and design opportunities. As the boundaries between diverse – material, digital and networked – spaces and experiences become increasingly blurred, so do the conventional distinctions between research and design. The papers presented in this focus section explore...... opportunities of using design anthropology as a holistic and critical approach to addressing societal challenges and change, and a way for anthropologists and designers to engage in participatory research and design that extend beyond the empirical....

  5. Mutual research capacity strengthening: a qualitative study of two-way partnerships in public health research

    Directory of Open Access Journals (Sweden)

    Redman-MacLaren Michelle

    2012-12-01

    Full Text Available Abstract Introduction Capacity building has been employed in international health and development sectors to describe the process of ‘experts’ from more resourced countries training people in less resourced countries. Hence the concept has an implicit power imbalance based on ‘expert’ knowledge. In 2011, a health research strengthening workshop was undertaken at Atoifi Adventist Hospital, Solomon Islands to further strengthen research skills of the Hospital and College of Nursing staff and East Kwaio community leaders through partnering in practical research projects. The workshop was based on participatory research frameworks underpinned by decolonising methodologies, which sought to challenge historical power imbalances and inequities. Our research question was, “Is research capacity strengthening a two-way process?” Methods In this qualitative study, five Solomon Islanders and five Australians each responded to four open-ended questions about their experience of the research capacity strengthening workshop and activities: five chose face to face interview, five chose to provide written responses. Written responses and interview transcripts were inductively analysed in NVivo 9. Results Six major themes emerged. These were: Respectful relationships; Increased knowledge and experience with research process; Participation at all stages in the research process; Contribution to public health action; Support and sustain research opportunities; and Managing challenges of capacity strengthening. All researchers identified benefits for themselves, their institution and/or community, regardless of their role or country of origin, indicating that the capacity strengthening had been a two-way process. Conclusions The flexible and responsive process we used to strengthen research capacity was identified as mutually beneficial. Using community-based participatory frameworks underpinned by decolonising methodologies is assisting to redress

  6. Participatory theatre and mental health recovery: a narrative inquiry.

    Science.gov (United States)

    Torrissen, Wenche; Stickley, Theo

    2018-01-01

    To identify the potential relationship between participation in theatre and mental health recovery. To give voice to the stories told by participants of Teater Vildenvei, a theatre company that has been part of the rehabilitation programme for mental health service users in Oslo since 1995. Twelve narrative interviews were conducted among participants of Teater Vildenvei, and the data were subject to a narrative analysis process following the philosophy of Paul Ricoeur and the specific methods of thematic, event and relational analysis as identified by Riessman. The narratives are considered in the theoretical light of the mental health recovery framework as identified by Leamy et al. Each participant had experienced a transformation in identity; the sense of belonging within the group was perceived as highly important to their mental health; engagement with the theatre company gives people something meaningful to do, a sense of hope and individuals feel empowered. This narrative inquiry gave opportunity for participants to elaborate on their stories of their engagement with Teater Vildenvei. It is through the richness of the data that the depth of the significance of meaning that people ascribe to their stories demonstrates the potential power of participatory theatre for mental health recovery. Because of its effects, people make life-changing and life-saving claims.

  7. Complexities of holistic community-based participatory research for a low income, multi-ethnic population exposed to multiple built-environment stressors in Worcester, Massachusetts.

    Science.gov (United States)

    Downs, Timothy J; Ross, Laurie; Patton, Suzanne; Rulnick, Sarah; Sinha, Deb; Mucciarone, Danielle; Calvache, Maria; Parmenter, Sarah; Subedi, Rajendra; Wysokenski, Donna; Anderson, Erin; Dezan, Rebecca; Lowe, Kate; Bowen, Jennifer; Tejani, Amee; Piersanti, Kelly; Taylor, Octavia; Goble, Robert

    2009-11-01

    Low income, multi-ethnic communities in Main South/Piedmont neighborhoods of Worcester, Massachusetts are exposed to cumulative, chronic built-environment stressors, and have limited capacity to respond, magnifying their vulnerability to adverse health outcomes. "Neighborhood STRENGTH", our community-based participatory research (CBPR) project, comprised four partners: a youth center; an environmental non-profit; a community-based health center; and a university. Unlike most CBPR projects that are single topic-focused, our 'holistic', systems-based project targeted five priorities. The three research-focused/action-oriented components were: (1) participatory monitoring of indoor and outdoor pollution; (2) learning about health needs and concerns of residents through community-based listening sessions; (3) engaging in collaborative survey work, including a household vulnerability survey and an asthma prevalence survey for schoolchildren. The two action-focused/research-informed components were: (4) tackling persistent street trash and illegal dumping strategically; and (5) educating and empowering youth to promote environmental justice. We used a coupled CBPR-capacity building approach to design, vulnerability theory to frame, and mixed methods: quantitative environmental testing and qualitative surveys. Process and outcomes yielded important lessons: vulnerability theory helps frame issues holistically; having several topic-based projects yielded useful information, but was hard to manage and articulate to the public; access to, and engagement with, the target population was very difficult and would have benefited greatly from having representative residents who were paid at the partners' table. Engagement with residents and conflict burden varied highly across components. Notwithstanding, we built enabling capacity, strengthened our understanding of vulnerability, and are able to share valuable experiential knowledge.

  8. Community-based health and schools of nursing: supporting health promotion and research.

    Science.gov (United States)

    Shannon, Crystal

    2014-01-01

    This article examines the role of community-based schools of nursing in the promotion of public health and research in poverty-stricken areas. This was a three-phase study (questionnaire and key-informants' interviews) that surveyed representatives of prelicensure associate and baccalaureate nursing schools (n=17), nursing-school key informants (n=6) and community leaders (n=10). A 13-question web-based survey and semi-structured interview of key informants elicited data on demographics, nursing program design, exposure of faculty and students to various research and health promotion methods, and beliefs about student involvement. Nursing schools participated minimally in community-based health promotion (CBHP) and community-based participatory research saw reduced need for student involvement in such activities, cited multiple barriers to active community collaboration, and reported restricted community partnerships. CBHP was recognized to be a valuable element of health care and student education, but is obstructed by many barriers. This study suggests that nursing schools are not taking full advantage of relationships with community leaders. Recommendations for action are given. © 2013 Wiley Periodicals, Inc.

  9. Requirements for Participatory Framework on Governmental Policy Level

    Directory of Open Access Journals (Sweden)

    Birutė PITRĖNAITĖ

    2012-06-01

    Full Text Available The article seeks to specify the requirements of the framework for public participation in policy making on the governmental level aiming to elaborate a substantial content of the participatory policy. The research methodology engages both qualitative and quantitative approaches based on document analysis and interviews. We analysed a range of documents, issued by the Ministry of Education and Science of the Republic of Lithuania, where participatory groups are nominated for the annual terms of 2007 and 2010. Results of the research testify that, notwithstanding the considerable number of participatory facts, public administrators hold more than a half of the places in the participatory groups. Stakeholders other than public administrators are considered to be rather consultants than partners in policy development. We suggest that for a substantial, effective and efficient participation framework, several requirements should be met including a correct arena for stakes’ expression; completeness of the stake representation; balanced stake representation; sensitivity to research based evidence; monitoring and evaluation of participation quality.

  10. Metodo y Proceso de la Investigacion Participativa en la Capacitacion Rural (The Method and Process of Participatory Research in Rural Leadership Training). Cuadernos del CREFAL 19.

    Science.gov (United States)

    de Schutter, Anton

    In participatory research, education and learner participation are directly connected. The document analyzes the role of a participatory research method in the basic education of rural adults. The different phases of the Participant Research method are presented, along with a profound analysis of both research and participation. The claim is that…

  11. The Nature and Outcomes of Students' Longitudinal Participatory Research on Literacy Motivations and Schooling.

    Science.gov (United States)

    Oldfather, Penny; Thomas, Sally; Eckert, Lizz; Garcia, Florencia; Grannis, Nicki; Kilgore, John; Newman-Gonchar, Andy; Petersen, Brian; Rodriguez, Paul; Tjioe, Marcel

    1999-01-01

    Describes outcomes of a six-year study of students' participatory research on literacy motivations and schooling. Suggests the need for a fundamental shift of the dominant epistemology in society and schools to one based on trusting, listening to, and respecting the integrity of the minds of all participants in schooling. (NH)

  12. Participatory health system priority setting: Evidence from a budget experiment.

    Science.gov (United States)

    Costa-Font, Joan; Forns, Joan Rovira; Sato, Azusa

    2015-12-01

    Budget experiments can provide additional guidance to health system reform requiring the identification of a subset of programs and services that accrue the highest social value to 'communities'. Such experiments simulate a realistic budget resource allocation assessment among competitive programs, and position citizens as decision makers responsible for making 'collective sacrifices'. This paper explores the use of a participatory budget experiment (with 88 participants clustered in social groups) to model public health care reform, drawing from a set of realistic scenarios for potential health care users. We measure preferences by employing a contingent ranking alongside a budget allocation exercise (termed 'willingness to assign') before and after program cost information is revealed. Evidence suggests that the budget experiment method tested is cognitively feasible and incentive compatible. The main downside is the existence of ex-ante "cost estimation" bias. Additionally, we find that participants appeared to underestimate the net social gain of redistributive programs. Relative social value estimates can serve as a guide to aid priority setting at a health system level. Copyright © 2015 Elsevier Ltd. All rights reserved.

  13. Social Impact of Participatory Health Research: Collaborative Non-Linear Processes of Knowledge Mobilization

    Science.gov (United States)

    Abma, Tineke A.; Cook, Tina; Rämgård, Margaretha; Kleba, Elisabeth; Harris, Janet; Wallerstein, Nina

    2017-01-01

    Social impact, defined as an effect on society, culture, quality of life, community services, or public policy beyond academia, is widely considered as a relevant requirement for scientific research, especially in the field of health care. Traditionally, in health research, the process of knowledge transfer is rather linear and one-sided and has…

  14. [Participatory design guide for mental health promotion in prisons].

    Science.gov (United States)

    Bustamante Navarro, R; Paredes-Carbonell, J J; Aviñó Juan-Ulpiano, D; González Rubio, J; Pitarch Monzó, C; Martínez Martínez, L; Arroyo-Cobo, J M

    2013-01-01

    [corrected] The main aim was to describe the issues and the participatory process required to design a Guide to promotemental health in prison through group activities. We reviewed the bibliography, the mental health policies, the workshops about healthy mental habits, and a video about protection and risk factors. We identified the stakeholders and sought their points of view about the topics included in the Guide. We decided on the contents of the Guide and the incorporation of the health assets model and the perspectives provided by gender and cultural diversity. After the initial design of the modules and sessions, we started a pilot in the Prison of Valencia and the Prison of Zaragoza with women and men from different cultures, incorporating the suggested improvements, unifying contents and the discursive style. The guide is formed by: a preface, introduction, description, modules, sessions and evaluation. It has 6 modules and 19 sessions on: health and motivation; self-esteem; health and emotions; more assets to improve health: relax, positive thinking, keeping calm, communication and problem resolution; progress is possible: resiliency and starring in my own change. Each session consists of: activities (objectives, material, allocated time and development), theoretical material and tabbed sheets for activities. The guide is available in print and online versions. A guide has been elaborated with involved stakeholders and the opinion of the prison population.

  15. Power-sharing Partnerships: Teachers' Experiences of Participatory Methodology.

    Science.gov (United States)

    Ferreira, Ronél; Ebersöhn, Liesel; Mbongwe, Bathsheba B

    2015-01-01

    This article reports on the experiences of teachers as coresearchers in a long-term partnership with university researchers, who participated in an asset-based intervention project known as Supportive Teachers, Assets and Resilience (STAR). In an attempt to inform participatory research methodology, the study investigated how coresearchers (teachers) experienced power relations. We utilized Gaventa's power cube as a theoretical framework and participatory research as our methodologic paradigm. Ten teachers of a primary school in the Eastern Cape and five teachers of a secondary school in a remote area in the Mpumalanga Province in South Africa participated (n=15). We employed multiple data generation techniques, namely Participatory Reflection and Action (PRA) activities, observation, focus group discussions, and semistructured interviews, using thematic analysis and categorical aggregation for data analysis. We identified three themes, related to the (1) nature of power in participatory partnerships, (2) coreasearchers' meaning making of power and partnerships, and their (3) role in taking agency. Based on these findings, we developed a framework of power sharing partnerships to extend Gaventa's power cube theory. This framework, and its five interrelated elements (leadership as power, identifying vision and mission, synergy, interdependent role of partners, and determination), provide insight into the way coresearchers shared their experiences of participatory research methodology. We theorise power-sharing partnerships as a complimentary platform hosting partners' shared strengths, skills, and experience, creating synergy in collaborative projects.

  16. Place and Situated Deliberation in Participatory Planning – A Research Proposal

    DEFF Research Database (Denmark)

    Korn, Matthias

    2011-01-01

    for everyone and everywhere through a mobile augmented reality application that visualizes future, planned buildings on capable mobile phones. I conclude with the central questions and problems for future research that focuses on place and situated deliberation.......Within the domain of participatory urban planning, this position paper argues for a focus on the notion of place in the design of mobile and/or ubiquitous systems that are used in deliberation processes with central spatial references. I discuss (1) leveraging properties of place as a resource...

  17. Implementing a court diversion and liaison scheme in a remand prison by systematic screening of new receptions: a 6 year participatory action research study of 20,084 consecutive male remands

    Science.gov (United States)

    2013-01-01

    Background A mental health needs assessment in the Irish prison population confirmed findings from other jurisdictions showing high prevalence of severe mental illness, including psychosis amongst those newly committed. We implemented a participatory action research approach in order to provide an integrated mental health prison in-reach and court liaison service for this population. Results Following extensive consultation, a two stage screening process was developed which was supplemented by an inter-agency referral management system. During the six years 2006–2011, all 20,084 new remands to the main remand prison serving 58% of the national population were screened. Following the first stage screen, 3,195 received a comprehensive psychiatric assessment. Of these 561 (2.8%) had symptoms of psychosis – corresponding to the prior research finding – and 572 were diverted from the criminal justice system to mental health services (89 to a secure forensic hospital, 164 to community mental health hospitals and 319 to other community mental health services). Conclusions We have shown that it is possible to match research findings in clinical practice by systematic screening, to sustain this over a long period and to achieve consistent levels of diversion from the criminal justice system to appropriate mental health services. The sustained and consistent performance of the model used is likely to reflect the use of participatory action research both to find the most effective model and to achieve wide ownership and cooperation with the model of care. PMID:23800103

  18. Towards a Creative Synthesis of Participant Observation and Participatory Research: Reflections on Doing Research "with" and "on" Young Bhutanese Refugees in Nepal

    Science.gov (United States)

    Evans, Rosalind

    2013-01-01

    This article responds to Wright and Nelson's (1995) call for a "creative synthesis" of participant observation and participatory research, which may allow the limitations of both methods to be addressed. It does so by reflecting on the experience of doing long-term research both with and on young Bhutanese refugees in Nepal. Although…

  19. Participatory Action Research for High School Students: Transforming Policy, Practice, and the Personal with Social Justice Education

    Science.gov (United States)

    Cammarota, Julio; Romero, Augustine

    2011-01-01

    The authors discuss how participatory action research (PAR) informs the pedagogy and epistemology of the social justice education. PAR facilitates students' engagement in their social context and acquisition of knowledge to initiate personal and social transformation. The scope of research contains knowledge about social justice issues negatively…

  20. A Participatory Action Research Study of Nature Education in Nature: Towards Community-Based Eco-Pedagogy

    Science.gov (United States)

    Eryaman, Mustafa Yunus; Yalcin-Ozdilek, Sukran; Okur, Emel; Cetinkaya, Zeynep; Uygun, Selcuk

    2010-01-01

    Contemporary nature education is exploring different ways to develop awareness for change and initiate action. Such educational activities go beyond creating understanding and awareness in order to develop a sense of commitment for individual and collective action. This participatory action research study aimed to improve teachers' sensitiveness…

  1. The Ecology of Gahu : Participatory Music and Health Benefits of Ewe P erformanc e in a Canadian Drum and Dance Ensemble

    Directory of Open Access Journals (Sweden)

    Kathy Armstrong

    2016-12-01

    Full Text Available Ghanaian music and dance provide a rich environment for social interaction, which is a significant contributory factor to health and well-being, both for individuals and the communities in which they live. The vibrant and energetic drumming and dance of the popular Ewe piece Gahu offer numerous opportunities for participatory music-making, not only in Ghana but throughout the world, in performance, educational and community settings. Through video analysis and discussion of cross-disciplinary research, this article identifies the ecological factors present in a Canadian university performance of Gahu that play a positive role in the health of the students involved.

  2. Community‐Based Participatory Research Skills and Training Needs in a Sample of Academic Researchers from a Clinical and Translational Science Center in the Northeast

    Science.gov (United States)

    DiGirolamo, Ann; Geller, Alan C.; Tendulkar, Shalini A.; Patil, Pratima; Hacker, Karen

    2012-01-01

    Abstract Purpose: To determine the community‐based participatory research (CBPR) training interests and needs of researchers interested in CBPR to inform efforts to build infrastructure for conducting community‐engaged research. Method: A 20‐item survey was completed by 127 academic health researchers at Harvard Medical School, Harvard School of Public Health, and Harvard affiliated hospitals. Results: Slightly more than half of the participants reported current or prior experience with CBPR (58 %). Across all levels of academic involvement, approximately half of the participants with CBPR experience reported lacking skills in research methods and dissemination, with even fewer reporting skills in training of community partners. Regardless of prior CBPR experience, about half of the respondents reported having training needs in funding, partnership development, evaluation, and dissemination of CBPR projects. Among those with CBPR experience, more than one‐third of the participants wanted a mentor in CBPR; however only 19 % were willing to act as a mentor. Conclusions: Despite having experience with CBPR, many respondents did not have the comprehensive package of CBPR skills, reporting a need for training in a variety of CBPR skill sets. Further, the apparent mismatch between the need for mentors and availability in this sample suggests an important area for development. Clin Trans Sci 2012; Volume #: 1–5 PMID:22686211

  3. Conducting participatory photography with children with disabilities: a literature review.

    Science.gov (United States)

    Eisen, Isabel; Cunningham, Barbara Jane; Campbell, Wenonah

    2018-03-28

    This review summarized studies that used participatory photography with children with disabilities, including those with communication impairments, and described modifications made to the methodology to facilitate their participation in qualitative research. In the fall of 2016, we searched Psycinfo (OVID), ERIC, CINAHL and Web of Science to identify studies that used participatory photography with children with disabilities. The search was repeated in January 2018 to retrieve any new publications. The first author extracted data that described the characteristics of each study and the modifications used. Of the 258 articles identified, 19 met inclusion criteria. Participants ranged from 4-21 years old and had a variety of disabilities. Study topics included education, leisure activities and adulthood. Researchers modified participatory photography to enhance accessibility by: modifying cameras; providing individual training; teaching consent through role play; allowing children to direct adults to take photographs; including additional forms of media; using diaries and questionnaires; providing individual interviews with simplified questions; using multiple forms of communication; and modifying how photographs are shared. Participatory photography can be an effective method for studying the lived experiences of children with disabilities, particularly those with communication impairments. Methodological modifications can enhance the accessibility of this approach for this population. Implications for Rehabilitation Participatory photography may be an effective qualitative research method for learning about the perspectives and experiences of children with disabilities on a wide array of topics. There are many specific modifications that researchers can use to support the inclusion of children with disabilities in participatory photography research. The findings of studies that use participatory photography methodology may provide rehabilitation professionals

  4. Future challenges for occupational health services can be prevented by proactive collaboration with the companies using the services: a participatory and reflection project

    Directory of Open Access Journals (Sweden)

    Lydell M

    2017-05-01

    take action to apply new proactive health promotions, with a focus on workplace health promotion. The results also indicated that interventions for senior employees are of importance. This study was done in collaboration with the stakeholders from the occupational health care service center and the managers from the customer companies. The use of a participatory research design, including close collaboration with the participants, allows the researchers to see the challenges. Keywords: health-promoting workplace, managers, future challenges, participatory approach, senior workers

  5. Improving maternity care in the Dominican Republic: a pilot study of a community-based participatory research action plan by an international healthcare team.

    Science.gov (United States)

    Foster, Jennifer; Gossett, Sarah; Burgos, Rosa; Cáceres, Ramona; Tejada, Carmen; Dominguez García, Luis; Ambrosio Rosario, Angel; Almonte, Asela; Perez, Lydia J

    2015-05-01

    This article is a report of the process and results of a feasibility pilot study to improve the quality of maternity care in a sample of 31 women and their newborns delivering in a public, tertiary hospital in the Dominican Republic. The pilot study was the first "action step" taken as a result of a formative, community-based participatory research (CBPR) study conducted between 2008 and 2010 by an interdisciplinary, international partnership of U.S. academic researchers, Dominican medical/nursing personnel, and Dominican community health workers. Health personnel and community health workers separately identified indicators most important to measure quality of antepartum maternity care: laboratory and diagnostic studies and respectful, interpersonal communication. At the midpoint and the completion of data collection, the CBPR team evaluated the change in quality indicators to assess improvement in care. The pilot study supports the idea that joint engagement of community health workers, health personnel, and academic researchers with data creation and patient monitoring is motivating for all to continue to improve services in the cultural context of the Dominican Republic. © The Author(s) 2014.

  6. Praxis, Ethics and Power: Developing Praxeology as a Participatory Paradigm for Early Childhood Research

    Science.gov (United States)

    Pascal, Chris; Bertram, Tony

    2012-01-01

    The discipline and practice of participatory, practice-led research has grown rapidly in recent years and it is now widely accepted as making an important and serious contribution to the knowledge base of early childhood. Despite this progress recently we have come to understand that our worldview has needed to shift again in response to the…

  7. Farmers' Attitude towards a Participatory Research Method Used to Evaluate Weed Management Strategies in Bananas

    Science.gov (United States)

    Ganpat, Wayne G.; Isaac, Wendy-Ann P.; Brathwaite, Richard A. I.; Bekele, Isaac

    2009-01-01

    In this study, farmers were engaged in a participatory research project and their attitudes evaluated. The purpose was to identify the characteristics of farmers who are favourably predisposed towards meaningful participation in the process. Several cover crops were tested for possible use in the management of watergrass ("Commelina…

  8. Teaching ethical-participatory social design

    DEFF Research Database (Denmark)

    Dupret, Katia; Chimirri, Niklas Alexander

    2018-01-01

    , and by fostering ongoing mutual reflection. These workshops are inspired by participatory design, political theory, disability studies and psychological practice research. By drawing on empirical material from a design workshop with Bachelor students and external collaborators including psychologically vulnerable...... stakeholders, we argue for an adaptive framework of analytical-pedagogical inquiry that can be continuously co-designed. In particular, ethical design requires a broad and emergent definition of participation. Ethical design is participatory-democratic co-design, which acknowledges and bridges across...

  9. Amish-Initiated Burn Care Project: Case Report and Lessons Learned in Participatory Research.

    Science.gov (United States)

    Hess, Rosanna F

    2017-03-01

    This case report describes the phases of an Amish Burn Care Project and the lessons learned throughout the process. Data sources to construct the case report included participant observation, interviews, archival documents, and a focus group. The narrative is organized into five phases of a participatory research approach: engagement, formalization, mobilization, maintenance, and expansion. Community-initiated research led to legitimate change, working together for change took time, team members grew in mutual trust and respect for each other, cultural humility brought personal and professional growth, and capacity building took place through mutually supported efforts.

  10. Using community-based participatory research principles to develop more understandable recruitment and informed consent documents in genomic research.

    Directory of Open Access Journals (Sweden)

    Harlyn G Skinner

    Full Text Available Heart Healthy Lenoir is a transdisciplinary project aimed at creating long-term, sustainable approaches to reduce cardiovascular disease risk disparities in Lenoir County, North Carolina using a design spanning genomic analysis and clinical intervention. We hypothesized that residents of Lenoir County would be unfamiliar and mistrustful of genomic research, and therefore reluctant to participate; additionally, these feelings would be higher in African-Americans.To test our hypothesis, we conducted qualitative research using community-based participatory research principles to ensure our genomic research strategies addressed the needs, priorities, and concerns of the community. African-American (n = 19 and White (n = 16 adults in Lenoir County participated in four focus groups exploring perceptions about genomics and cardiovascular disease. Demographic surveys were administered and a semi-structured interview guide was used to facilitate discussions. The discussions were digitally recorded, transcribed verbatim, and analyzed in ATLAS.ti.From our analysis, key themes emerged: transparent communication, privacy, participation incentives and barriers, knowledge, and the impact of knowing. African-Americans were more concerned about privacy and community impact compared to Whites, however, African-Americans were still eager to participate in our genomic research project. The results from our formative study were used to improve the informed consent and recruitment processes by: 1 reducing misconceptions of genomic studies; and 2 helping to foster participant understanding and trust with the researchers. Our study demonstrates how community-based participatory research principles can be used to gain deeper insight into the community and increase participation in genomic research studies. Due in part to these efforts 80.3% of eligible African-American participants and 86.9% of eligible White participants enrolled in the Heart Healthy Lenoir Genomics

  11. Confidentiality in participatory research: Challenges from one study.

    Science.gov (United States)

    Petrova, Elmira; Dewing, Jan; Camilleri, Michelle

    2016-06-01

    This article presents key ethical challenges that were encountered when conducting a participatory qualitative research project with a very specific, small group of nurses, in this case with practice development nurses in Malta. With the small number of nurses employed in practice development roles in Malta, there are numerous difficulties of maintaining confidentiality. Poorly constructed interventions by the researcher could have resulted in detrimental effects to research participants and the overall trustworthiness of the research. Generally, ethical guidelines for research exist to reinforce validity of research; however, there is not an established consensus on how these strategies can be utilised in some types of qualitative field work. The researcher used an exploratory case study methodology. The sample consisted of 10 participants who were interviewed twice using face-to-face interviews, over a period of 2 months. The study was ethically reviewed by the University Research Ethics Committee and the Faculty Research Ethics Committee, University of Malta. The participants referred to in this article have been given adequate information about the study and their consent has been obtained. Numerous strategies for ensuring confidentiality during recruitment of the participants, during data collection, during transcription and data analysis and during dissemination of research results assisted the researcher in responding to potential and actual ethical issues. This article emphasises the main strategies that can be used to respond to ethical challenges when researching with a small easily identifiable group. The learning discussed here may be relevant to or even transferable to other similar research studies or research contexts. These methods fostered a greater credibility throughout the research process and predisposed the participants to greater trust, and thus, they disclosed their experiences and speak more freely, thus enhancing the quality of the study

  12. Harnessing the power of the grassroots to conduct public health research in sub-Saharan Africa: a case study from western Kenya in the adaptation of community-based participatory research (CBPR) approaches

    Science.gov (United States)

    2013-01-01

    Background Community-based participatory research (CBPR) is a collaborative approach to research that involves the equitable participation of those affected by an issue. As the field of global public health grows, the potential of CBPR to build capacity and to engage communities in identification of problems and development and implementation of solutions in sub-Saharan Africa has yet to be fully tapped. The Orphaned and Separated Children’s Assessments Related to their Health and Well-Being (OSCAR) project is a longitudinal cohort of orphaned and non-orphaned children in Kenya. This paper will describe how CBPR approaches and principles can be incorporated and adapted into the study design and methods of a longitudinal epidemiological study in sub-Saharan Africa using this project as an example. Methods The CBPR framework we used involves problem identification, feasibility and planning; implementation; and evaluation and dissemination. This case study will describe how we have engaged the community and adapted CBPR methods to OSCAR’s Health and Well-being Project’s corresponding to this framework in four phases: 1) community engagement, 2) sampling and recruitment, 3) retention, validation, and follow-up, and 4) analysis, interpretation and dissemination. Results To date the study has enrolled 3130 orphaned and separated children, including children living in institutional environments, those living in extended family or other households in the community, and street-involved children and youth. Community engagement and participation was integral in refining the study design and identifying research questions that were impacting the community. Through the participation of village Chiefs and elders we were able to successfully identify eligible households and randomize the selection of participants. The on-going contribution of the community in the research process has been vital to participant retention and data validation while ensuring cultural and

  13. Community Priority Index: utility, applicability and validation for priority setting in community-based participatory research

    Directory of Open Access Journals (Sweden)

    Hamisu M. Salihu

    2015-07-01

    Full Text Available Background. Providing practitioners with an intuitive measure for priority setting that can be combined with diverse data collection methods is a necessary step to foster accountability of the decision-making process in community settings. Yet, there is a lack of easy-to-use, but methodologically robust measures, that can be feasibly implemented for reliable decision-making in community settings. To address this important gap in community based participatory research (CBPR, the purpose of this study was to demonstrate the utility, applicability, and validation of a community priority index in a community-based participatory research setting. Design and Methods. Mixed-method study that combined focus groups findings, nominal group technique with six key informants, and the generation of a Community Priority Index (CPI that integrated community importance, changeability, and target populations. Bootstrapping and simulation were performed for validation. Results. For pregnant mothers, the top three highly important and highly changeable priorities were: stress (CPI=0.85; 95%CI: 0.70, 1.00, lack of affection (CPI=0.87; 95%CI: 0.69, 1.00, and nutritional issues (CPI=0.78; 95%CI: 0.48, 1.00. For non-pregnant women, top priorities were: low health literacy (CPI=0.87; 95%CI: 0.69, 1.00, low educational attainment (CPI=0.78; 95%CI: 0.48, 1.00, and lack of self-esteem (CPI=0.72; 95%CI: 0.44, 1.00. For children and adolescents, the top three priorities were: obesity (CPI=0.88; 95%CI: 0.69, 1.00, low self-esteem (CPI=0.81; 95%CI: 0.69, 0.94, and negative attitudes toward education (CPI=0.75; 95%CI: 0.50, 0.94. Conclusions. This study demonstrates the applicability of the CPI as a simple and intuitive measure for priority setting in CBPR.

  14. Scandinavian Participatory Design

    DEFF Research Database (Denmark)

    Iversen, Ole Sejer; Smith, Rachel Charlotte

    2012-01-01

    As Scandinavian Participatory Design (PD) approach is a highly values-led design approach, and is gaining importance in IDC research, we discuss the underlying values of democracy, quality of work and emancipation of this approach. We present a case study, Digital Natives, in which the Scandinavian...

  15. Reach Out Churches: A Community-Based Participatory Research Pilot Trial to Assess the Feasibility of a Mobile Health Technology Intervention to Reduce Blood Pressure Among African Americans.

    Science.gov (United States)

    Skolarus, Lesli E; Cowdery, Joan; Dome, Mackenzie; Bailey, Sarah; Baek, Jonggyu; Byrd, James Brian; Hartley, Sarah E; Valley, Staci C; Saberi, Sima; Wheeler, Natalie C; McDermott, Mollie; Hughes, Rebecca; Shanmugasundaram, Krithika; Morgenstern, Lewis B; Brown, Devin L

    2017-06-01

    Innovative strategies are needed to reduce the hypertension epidemic among African Americans. Reach Out was a faith-collaborative, mobile health, randomized, pilot intervention trial of four mobile health components to reduce high blood pressure (BP) compared to usual care. It was designed and tested within a community-based participatory research framework among African Americans recruited and randomized from churches in Flint, Michigan. The purpose of this pilot study was to assess the feasibility of the Reach Out processes. Feasibility was assessed by willingness to consent (acceptance of randomization), proportion of weeks participants texted their BP readings (intervention use), number lost to follow-up (retention), and responses to postintervention surveys and focus groups (acceptance of intervention). Of the 425 church members who underwent BP screening, 94 enrolled in the study and 73 (78%) completed the 6-month outcome assessment. Median age was 58 years, and 79% were women. Participants responded with their BPs on an average of 13.7 (SD = 10.7) weeks out of 26 weeks that the BP prompts were sent. All participants reported satisfaction with the intervention. Reach Out, a faith-collaborative, mobile health intervention was feasible. Further study of the efficacy of the intervention and additional mobile health strategies should be considered.

  16. Using social simulation to explore the dynamics at stake in participatory research

    OpenAIRE

    Barreteau, Olivier; Le Page, Christophe

    2011-01-01

    This position paper contributes to the debate on perspectives for simulating the social processes of science through the specific angle of participatory research. This new way of producing science is still in its infancy and needs some step back and analysis, to understand what is taking place on the boundaries between academic, policy and lay worlds. We argue that social simulation of this practice of cooperation can help in understanding further this new way of doing science, building on ex...

  17. Space for human connection in antenatal education: Uncovering women's hopes using Participatory Action Research.

    Science.gov (United States)

    Brady, Vivienne; Lalor, Joan

    2017-12-01

    the aim of this research was to initiate active consultation with women and antenatal educators in the development and delivery of antenatal education that was mutually relevant. a Participatory Action Research approach influenced by feminist concerns was used to guide the research. Data were analysed by the researcher and participants using a Voice Centred Relational Method of Analysis. an Antenatal Education service in a consultant-led tertiary referral unit in Ireland. research findings revealed women's desires to build relationships through ANE to cope with anticipated loneliness and isolation after birth; however, environmental, structural, and organisational factors prohibited opportunity to build space for human connection. Participating women valued external and authoritative knowledge as truth, but concomitantly sought opportunity and space through classes to learn from the real life experiences of other mothers. Women lacked confidence in embodied knowing and their power to birth and demonstrated unquestioning acceptance of the predetermined nature of hospital birth and biomedical model of maternity care. in this research, we envisioned that hospital-based ANE, relevant and grounded in the needs and life experiences of women, could be developed, with a view to supporting women's decision-making processes, and understanding of pregnancy, birth and early motherhood. Participatory Action Research using a Voice Centred Relational Method of Analysis offered an opportunity to foster ethical and dialogic activity between learner and facilitator, underpinned by acknowledgement of the value of women's experiences; however, space for expression of new and useful knowledge in preparation for motherhood was limited by institutional context. Copyright © 2017 Elsevier Ltd. All rights reserved.

  18. Processes, barriers and facilitators to implementation of a participatory ergonomics program among eldercare workers

    DEFF Research Database (Denmark)

    Rasmussen, Charlotte Diana Nørregaard; Lindberg, Naja Klærke; Ravn, Marie Højbjerg

    2017-01-01

    This study aimed to investigate the processes of a participatory ergonomics program among 594 eldercare workers with emphasis on identified risk factors for low back pain and solutions, and reveal barriers and facilitators for implementation. Sixty-nine per cent of the identified risk factors wer......, workplaces, health and safety professionals, and researchers to improve future participatory ergonomics programs....... physical ergonomic, 24% were organisational and 7% were psychosocial risk factors. Most solutions were organisational (55%), followed by physical (43%) and psychosocial solutions (2%). Internal factors (e.g. team or management) constituted 47% of the barriers and 75% of the facilitators. External factors...

  19. Field tests of a participatory ergonomics toolkit for Total Worker Health.

    Science.gov (United States)

    Nobrega, Suzanne; Kernan, Laura; Plaku-Alakbarova, Bora; Robertson, Michelle; Warren, Nicholas; Henning, Robert

    2017-04-01

    Growing interest in Total Worker Health ® (TWH) programs to advance worker safety, health and well-being motivated development of a toolkit to guide their implementation. Iterative design of a program toolkit occurred in which participatory ergonomics (PE) served as the primary basis to plan integrated TWH interventions in four diverse organizations. The toolkit provided start-up guides for committee formation and training, and a structured PE process for generating integrated TWH interventions. Process data from program facilitators and participants throughout program implementation were used for iterative toolkit design. Program success depended on organizational commitment to regular design team meetings with a trained facilitator, the availability of subject matter experts on ergonomics and health to support the design process, and retraining whenever committee turnover occurred. A two committee structure (employee Design Team, management Steering Committee) provided advantages over a single, multilevel committee structure, and enhanced the planning, communication, and teamwork skills of participants. Copyright © 2016 Elsevier Ltd. All rights reserved.

  20. Field tests of a participatory ergonomics toolkit for Total Worker Health

    Science.gov (United States)

    Kernan, Laura; Plaku-Alakbarova, Bora; Robertson, Michelle; Warren, Nicholas; Henning, Robert

    2018-01-01

    Growing interest in Total Worker Health® (TWH) programs to advance worker safety, health and well-being motivated development of a toolkit to guide their implementation. Iterative design of a program toolkit occurred in which participatory ergonomics (PE) served as the primary basis to plan integrated TWH interventions in four diverse organizations. The toolkit provided start-up guides for committee formation and training, and a structured PE process for generating integrated TWH interventions. Process data from program facilitators and participants throughout program implementation were used for iterative toolkit design. Program success depended on organizational commitment to regular design team meetings with a trained facilitator, the availability of subject matter experts on ergonomics and health to support the design process, and retraining whenever committee turnover occurred. A two committee structure (employee Design Team, management Steering Committee) provided advantages over a single, multilevel committee structure, and enhanced the planning, communication, and team-work skills of participants. PMID:28166897

  1. Evaluation of regional project to strengthen national health research systems in four countries in West Africa: lessons learned.

    Science.gov (United States)

    Sombié, Issiaka; Aidam, Jude; Montorzi, Gabriela

    2017-07-12

    Since the Commission on Health Research for Development (COHRED) published its flagship report, more attention has been focused on strengthening national health research systems (NHRS). This paper evaluates the contribution of a regional project that used a participatory approach to strengthen NHRS in four post-conflict West African countries - Guinea-Bissau, Liberia, Sierra Leone and Mali. The data from the situation analysis conducted at the start of the project was compared to data from the project's final evaluation, using a hybrid conceptual framework built around four key areas identified through the analysis of existing frameworks. The four areas are governance and management, capacities, funding, and dissemination/use of research findings. The project helped improve the countries' governance and management mechanisms without strengthening the entire NHRS. In the four countries, at least one policy, plan or research agenda was developed. One country put in place a national health research ethics committee, while all four countries could adopt a research information management system. The participatory approach and support from the West African Health Organisation and COHRED were all determining factors. The lessons learned from this project show that the fragile context of these countries requires long-term engagement and that support from a regional institution is needed to address existing challenges and successfully strengthen the entire NHRS.

  2. Conducting Participatory Culture-Specific Consultation: A Global Perspective on Multicultural Consultation.

    Science.gov (United States)

    Nastasi, Bonnie K.; Varjas, Kristen; Bernstein, Rachel; Iavasena, Asoka

    2000-01-01

    Describes a participatory approach to consultation that builds upon contemporary models of research and practice and is designed to address the culture-specific needs of individuals and systems. The Participatory Culture-Specific Consultation (PCSC) model embodies a participatory interpersonal process and relies on ethnographic and action research…

  3. Can We Find Solutions with People? Participatory Action Research with Small Organic Producers in Andalusia

    Science.gov (United States)

    Cuellar-Padilla, Mamen; Calle-Collado, Angel

    2011-01-01

    This paper reports on an experiment linking science with people. Taking as a paradigm the holistic scientific approach fostered by agroecology, we present a methodological proposal for the implementation of participatory action research in rural areas. Our aims were various: to solve a specific problem, i.e. the exclusion of small- and…

  4. Youth Participatory Action Research and Educational Transformation: The Potential of Intertextuality as a Methodological Tool

    Science.gov (United States)

    Bertrand, Melanie

    2016-01-01

    In this article, Melanie Bertrand explores the potential of using the concept of intertextuality--which captures the way snippets of written or spoken text from one source become incorporated into other sources--in the study and practice of youth participatory action research (YPAR). Though this collective and youth-centered form of research…

  5. Design and implementation of participatory hygiene and sanitation ...

    African Journals Online (AJOL)

    Background: The study is a continuation of a research carried out in Luweero district in Uganda1. It investigated whether PHAST was a suitable tool for reducing transmission of soil transmitted helminths. PHAST means Participatory Hygiene and Sanitation Transformation; a participatory approach that uses visual tools to ...

  6. PDC 2016. Proceedings of the 14th Participatory Design Conference - Volume II

    DEFF Research Database (Denmark)

    Participatory Design in an Era of Participation : Introduction to volume 2 Participatory Design is a diverse collection of principles and practices aimed at making technologies, tools, environments, businesses and social institutions more responsive to human needs. A central tenet of Participatory...... is ‘Participatory Design in an Era of Participation’. Over 25 years after the first PDC in 1990, participation and co-creation have become essential features of design and research into technology. Living in an era of participation prompts critical questions around the goals and practices of involving people....... • In “Expanding the ‘How’ of Participatory Design”, five papers provide insights into techniques and methods that support novel perspectives on how participatory design activities might be practiced or reflected upon. This includes examples that should benefit practitioners and researchers who wish to think...

  7. RESEARCH: Theory in Practice: Applying Participatory Democracy Theory to Public Land Planning

    Science.gov (United States)

    Moote; Mcclaran; Chickering

    1997-11-01

    / Application of participatory democracy theory to public participation in public land planning, while widely advocated, has not been closely examined. A case study is used here to explicate the application of participatory democracy concepts to public participation in public land planning and decision making. In this case, a Bureau of Land Management resource area manager decided to make a significant shift from the traditional public involvement process to a more participatory method-coordinated resource management (CRM). This case was assessed using document analysis, direct observation of CRM meetings, questionnaires, and interviews of key participants. These sources were used to examine the CRM case using participatory democracy concepts of efficacy, access and representation, continuous participation throughout planning, information exchange and learning, and decision-making authority. The case study suggests that social deliberation in itself does not ensure successful collaboration and that establishing rules of operation and decision making within the group is critical. Furthermore, conflicts between the concept of shared decision-making authority and the public land management agencies' accountability to Congress, the President, and the courts need further consideration.KEY WORDS: Case study; Coordinated resource management; Public participation; Administrative discretion; Representation; Consensus; Collaboration

  8. Intersectionality and gender mainstreaming in international health: using a feminist participatory action research process to analyse voices and debates from the global south and north.

    Science.gov (United States)

    Tolhurst, Rachel; Leach, Beryl; Price, Janet; Robinson, Jude; Ettore, Elizabeth; Scott-Samuel, Alex; Kilonzo, Nduku; Sabuni, Louis P; Robertson, Steve; Kapilashrami, Anuj; Bristow, Katie; Lang, Raymond; Romao, Francelina; Theobald, Sally

    2012-06-01

    Critiques of gender mainstreaming (GM) as the officially agreed strategy to promote gender equity in health internationally have reached a critical mass. There has been a notable lack of dialogue between gender advocates in the global north and south, from policy and practice, governments and non-governmental organisations (NGOs). This paper contributes to the debate on the shape of future action for gender equity in health, by uniquely bringing together the voices of disparate actors, first heard in a series of four seminars held during 2008 and 2009, involving almost 200 participants from 15 different country contexts. The series used (Feminist) Participatory Action Research (FPAR) methodology to create a productive dialogue on the developing theory around GM and the at times disconnected empirical experience of policy and practice. We analyse the debates and experiences shared at the seminar series using concrete, context specific examples from research, advocacy, policy and programme development perspectives, as presented by participants from southern and northern settings, including Kenya, Mozambique, India, the Democratic Republic of Congo, Canada and Australia. Focussing on key discussions around sexualities and (dis)ability and their interactions with gender, we explore issues around intersectionality across the five key themes for research and action identified by participants: (1) Addressing the disconnect between gender mainstreaming praxis and contemporary feminist theory; (2) Developing appropriate analysis methodologies; (3) Developing a coherent theory of change; (4) Seeking resolution to the dilemmas and uncertainties around the 'place' of men and boys in GM as a feminist project; and (5) Developing a politics of intersectionality. We conclude that there needs to be a coherent and inclusive strategic direction to improve policy and practice for promoting gender equity in health which requires the full and equal participation of practitioners and

  9. Engaging cultural resources to promote mental health in Dutch LSES neighborhoods: study of a community-based participatory media project.

    Science.gov (United States)

    Knibbe, Mare; de Vries, Marten; Horstman, Klasien

    2017-06-01

    Community-based participatory media projects form a promising new strategy for mental health promotion that can help address the mental health-gap identified by the World Health Organization. (2008b) mhGAP, Mental Health Gap Action Programme: Scaling Up Care for Mental, Neurological and Substance Use Disorders. World Health Organization, Geneva. In this article we present an ethnographic study about a participatory media project that was developed to promote mental health in selected Dutch low socio-economic status neighborhoods. Through narrowcastings (group film viewings), participant observation and interviews we mapped the ways in which the media project effected and facilitated the collective sense-making process of the audience with regard to sources of stress impacting mental health and opportunities for action. These determinants of mental health are shaped by cultural dimensions, since the cultural context shapes everyday experiences of stress as well as the resources and skills to manage them. Our analysis shows that the media project engaged cultural resources to challenge stressful social scripts. We conclude that more attention should be paid to cultural narratives in a community to understand how health promotion strategies can support social resilience. © The Author 2015. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  10. Effectiveness of participatory adolescent strategic health action (PASHA for lifestyle modification among adolescents

    Directory of Open Access Journals (Sweden)

    Asha P Shetty

    2015-01-01

    Full Text Available Introduction: Lifestyle modification is one of the methods to promote healthy lifestyle among adolescents. In this study, the researcher planned to develop, implement and evaluate a need based Participatory Adolescent Strategic Health Action (PASHA for lifestyle modification among selected adolescents. Materials and Methods: An evaluative approach with Quasi experimental one group pretest post test design (time series was adopted. Sample constituted 103 adolescents, aged 12-17 years studying in high schools and pre university colleges of Udupi district selected based on convenient sampling. Data was gathered using reliable and valid tools. Results: The mean combined preventive health lifestyle score among all adolescents increased from 75.65-81.56. Similarly the number of adolescents with healthy lifestyle score also increased from 28.2-53.4% after practicing for 180 days. Analysis of all the components of lifestyle showed that the adolescents had adopted healthy lifestyle practices in all the components of lifestyle. The number of adolescents with combined health status score also showed an increase from 31.1-54.4% after implementing PASHA practice. Analysis of reported outcome among subjects indicated that PASHA was motivating to improve their lifestyle practices. Conclusion: PASHA was found to be effective in lifestyle modification of adolescents. It is reiterated that when lifestyle modification is to be done, a strategy to improve self directedness and self efficacy should be adopted.

  11. Transform Health Arkansas: A Transgender-Led Partnership Engaging Transgender/Non-Binary Arkansans in Defining Health Research Priorities.

    Science.gov (United States)

    Stewart, M Kathryn; Archie, Dani Smith; Marshall, S Alexandra; Allison, M Kathryn; Robinson, Colin

    2017-01-01

    Transgender/non-binary (trans/NB) individuals face major challenges, including within health care. Transform Health Arkansas (THA) engaged trans/ NB Arkansans in defining their greatest health-related concerns to inform responsive, partnered, participatory research. The THA partnership engaged trans/NB individuals through an interactive, trans/NB-led process in nine summits across the state and collected surveys on research interests. Descriptive analysis examined respondent characteristics by gender identity, mode of survey completion, and most pressing concerns. The summits, attended by 54 trans/NB and 29 cisgender individuals, received positive evaluations. The top five priorities among 140 survey respondents included (1) transition-related insurance coverage, (2) access to transition care, (3) education of health care providers, (4) public education, and (5) supportive health care systems. The THA has also led to trans/NB individuals educating a range of audiences about transgender issues. Next steps include dissemination, identification of evidence-based interventions addressing prioritized issues, and joint development of a research agenda.

  12. The impact of a peer-led participatory health and safety training program for Latino day laborers in construction.

    Science.gov (United States)

    Williams, Quintin; Ochsner, Michele; Marshall, Elizabeth; Kimmel, Louis; Martino, Carmen

    2010-06-01

    workers surveyed post-training reported sharing information from their safety workbook with friends and co-workers. Focus groups and interview results generally confirmed the quantitative findings. Participatory, peer led training tailored to the needs of construction day laborers may have a positive effect on Latino immigrant workers' attitudes, work practices, and self reported injury rates, but major changes would require employer engagement. Health and safety researchers have identified reducing the number of traumatic injuries among the immigrant construction workforce as an increasingly important priority. This project provides one model for collaboration between university-based researchers, a union, and a community-based organization. The specific elements of this project-participatory curriculum customized to the needs of day laborers in residential construction, training day laborers to facilitate training classes, and involving peer leaders in outreach and research-could be adapted by other organizations. The findings of this study suggest that the Latino day laborers have a strong interest in and some ability to act on health and safety information. Widespread implementation of this type of training, especially if supported with cooperation from residential contractors, could lead to reduced rates of traumatic injury in the residential construction industry. (c) 2010 National Safety Council. Published by Elsevier Ltd. All rights reserved.

  13. Exploring the challenges of implementing Participatory Action Research in the context of HIV and poverty

    Directory of Open Access Journals (Sweden)

    W.A. Rosenthal

    2010-09-01

    Full Text Available HIV/AIDS is having a devastating impact on South Africa and particularly on poor communities. Empowerment of communities has been identified as an important step towards mitigating the consequences and helping communities to overcome the challenges presented. Participatory Action Research (PAR has been identified as a useful methodology for the purpose of facilitating empowerment. This study explores the challenges involved in implementing PAR in the context of HIV/AIDS and poverty. In this article, the author describes a PAR project that took place in 2003/ 2004 with a group of five Xhosa speaking people living with HIV/AIDS in Masiphumelele, Cape Town. The aims of the study were to: 1. Create an opportunity for the participants to engage in a participatory process aimed at self-awareness and empowerment. 2. To record and analyse this process with the intention of producing insight into the use of PAR in the context of poverty and HIV/AIDS and to identify the challenges involved. The findings of this study highlight some important insights into the process of engaging people in the PAR process and the experiences of HIV positive people living in the context of poverty. The study explores the challenges involved in the process of empowerment and examines the process of “transferring” power and control from the researcher to the participants. Challenges were uncovered both from the point of view of the researcher who had to “let go of control” and participants who had to take on control. Participants struggled with issues of low self-efficacy and learned helplessness. Fluctuations in health also contributed towards alternating periods of hope and despair and these problems had an impact on their motivation to participate in the study. Lack of motivation to participate is a challenge highlighted in the literature and explored in this study. Participation is necessary for a study of this nature to be of benefit to the community, but

  14. Going to the source: creating a citizenship outcome measure by community-based participatory research methods.

    Science.gov (United States)

    Rowe, Michael; Clayton, Ashley; Benedict, Patricia; Bellamy, Chyrell; Antunes, Kimberly; Miller, Rebecca; Pelletier, Jean-Francois; Stern, Erica; O'Connell, Maria J

    2012-01-01

    This study used participatory methods and concept-mapping techniques to develop a greater understanding of the construct of citizenship and an instrument to assess the degree to which individuals, particularly those with psychiatric disorders, perceive themselves to be citizens in a multifaceted sense (that is, not in a simply legal sense). Participants were persons with recent experience of receiving public mental health services, having criminal justice charges, having a serious general medical illness, or having more than one of these "life disruptions," along with persons who had not experienced any of these disruptions. Community-based participatory methods, including a co-researcher team of persons with experiences of mental illness and other life disruptions, were employed. Procedures included conducting focus groups with each life disruption (or no disruption) group to generate statements about the meaning of citizenship (N = 75 participants); reducing the generated statements to 100 items and holding concept-mapping sessions with participants from the five stakeholder groups (N = 66 participants) to categorize and rate each item in terms of importance and access; analyzing concept-mapping data to produce citizenship domains; and developing a pilot instrument of citizenship. Multidimensional scaling and hierarchical cluster analysis revealed seven primary domains of citizenship: personal responsibilities, government and infrastructure, caring for self and others, civil rights, legal rights, choices, and world stewardship. Forty-six items were identified for inclusion in the citizenship measure. Citizenship is a multidimensional construct encompassing the degree to which individuals with different life experiences perceive inclusion or involvement across a variety of activities and concepts.

  15. Involving migrants in the development of guidelines for communication in cross-cultural general practice consultations: a participatory learning and action research project.

    Science.gov (United States)

    O'Reilly-de Brún, Mary; MacFarlane, Anne; de Brún, Tomas; Okonkwo, Ekaterina; Bonsenge Bokanga, Jean Samuel; Manuela De Almeida Silva, Maria; Ogbebor, Florence; Mierzejewska, Aga; Nnadi, Lovina; van den Muijsenbergh, Maria; van Weel-Baumgarten, Evelyn; van Weel, Chris

    2015-09-21

    The aim of this research was to involve migrants and other key stakeholders in a participatory dialogue to develop a guideline for enhancing communication in cross-cultural general practice consultations. In this paper, we focus on findings about the use of formal versus informal interpreters because dialogues about these issues emerged as central to the identification of recommendations for best practice. This qualitative case study involved a Participatory Learning and Action (PLA) research methodology. The sample comprised 80 stakeholders: 51 from migrant communities; 15 general practitioners (GPs) and general practice staff; 7 established migrants as peer researchers; 5 formal, trained interpreters; and 2 service planners from the national health authority. Galway, Ireland. There was 100% consensus across stakeholder groups that while informal interpreters have uses for migrants and general practice staff, they are not considered acceptable as best practice. There was also 100% consensus that formal interpreters who are trained and working as per a professional code of practice are acceptable as best practice. Policymakers and service planners need to work in partnership with service providers and migrants to progress the implementation of professional, trained interpreters as a routine way of working in general practice. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  16. What Policy Actors Seek for: Reciprocal Misunderstanding of Objectives of Participatory Decision Making

    OpenAIRE

    Birutė PITRĖNAITĖ-ŽILĖNIENĖ; Birutė MIKULSKIENĖ

    2013-01-01

    The goal of this research is to explore different policy actors’ attitudes towards participation in public decision making. The paper examines objectives of external participants’ involvement and compares various participants’ judgements on the process and results of participation. We screened operation of formal networks of participatory decision making at the Lithuanian Ministries of Health and Education & Science. The research revealed the willingness of decision makers to allow different ...

  17. Participatory Design in an Era of Participation, Special Issue

    DEFF Research Database (Denmark)

    This special issue on participatory design in an era of participation presents emerging topics and discussions from the thirteenth Participatory Design conference (PDC), held at Aarhus University in August 2016. The PDC 2016 marked the twenty-fifth anniversary of the Participatory Design conference...... series, which began in 1990 with the first biannual conference in Seattle. Since then, the PDC conferences have continued to bring together a multidisciplinary, international community of researchers and practitioners around issues of cooperative design. The theme for the 2016 PDC conference...... was ‘Participatory Design in an Era of Participation.’ Critical and constructive discussions were invited on the values, characteristics, politics and future practices of participatory design in an era in which participation has now become pervasive (Bossen, Smith, Kanstrup, McDonnell, et al. 2016, Bossen, Smith...

  18. Proceedings of the 14th Participatory Design Conference Vol. II

    DEFF Research Database (Denmark)

    and communication technology. Held every two years since 1990, PDC brings together a multidisciplinary and international group of researchers and practitioners from multiple fields. These include, but are not limited to, Human-Computer Interaction, CSCW (computer supported cooperative work), Co-Design, Design......Participatory Design in an Era of Participation : Introduction to volume 2 Participatory Design is a diverse collection of principles and practices aimed at making technologies, tools, environments, businesses and social institutions more responsive to human needs. A central tenet of Participatory...... is ‘Participatory Design in an Era of Participation’. Over 25 years after the first PDC in 1990, participation and co-creation have become essential features of design and research into technology. Living in an era of participation prompts critical questions around the goals and practices of involving people...

  19. Participatory Action Research in clinical nursing practice in a medical ward

    DEFF Research Database (Denmark)

    Kjerholt, Mette; Wagner, Lis; Lindhardt, Tove

    2016-01-01

    Background: Action research with a participatory approach (PAR) was used as research design in a medical ward but stopped midway because of lack of active actor participation in the actions. Aim: To describe challenges and barriers influencing lack of participation. Setting: A medical hospital ward......, Denmark. Participants were healthcare staff. Methods: Field observations, interviews, logbook. Data were analysed using content analysis methods. Findings: Multiple factors influenced lack of actor participation. The causes were complex and included: organizational framework, significance/meaning, actor...... roles, responsibility. Conclusion: Before using PAR it is crucial to investigate if the organization and the participants at all levels are suited and agree to participate actively. The findings indicate, that to carry out PAR in a busy medical ward, it is necessary to evaluate whether the necessary...

  20. Development of a participatory tool for the evaluation of Village Animal Health Workers in Cambodia.

    Science.gov (United States)

    Calba, Clementine; Ponsich, Aurelia; Nam, Sophorn; Collineau, Lucie; Min, Sophoan; Thonnat, Jerome; Goutard, Flavie Luce

    2014-06-01

    In countries with a lack of primary care systems, health workers are of crucial importance to improving the delivery of health and animal health services at community level. But somehow they are rarely evaluated and usually with a top-down approach. This is the case in Cambodia, where thousands of Village Animal Health Workers (VAHWs) have been trained by the government, and where no standardized evaluation tool is available to accurately assess the situation. Based on methodology developed by the French NGO Agronomes et Vétérinaires Sans Frontières (AVSF) in Madagascar for farmers' association evaluation, we developed our own participatory methods to collect information about the VAHW context and build a criteria grid for their evaluation. In this framework, several participatory approaches were used such as problem trees, semi-structured interviews, pair-wise ranking and focus groups. The grid was built with the help of relevant stakeholders involved in the animal health system in Cambodia in order to (i) identify VAHW functions; (ii) set up criteria and associated questionnaires, and (iii) score the grid with all the stakeholders. The tool was divided into five categories of evaluation criteria: sustainability, treatment, production, vaccination and disease reporting. Our approach looked at local indicators of success developed and used by VAHWs themselves, which should lead to better acceptability of evaluation. This method gave priority to dialog aiming to engage decision makers and other stakeholders in a mutual learning process and could be applied in other countries to develop trust between health workers and official service representatives as well as to foster corrective action after evaluation. Copyright © 2014 The Authors. Published by Elsevier B.V. All rights reserved.

  1. Community-based Participatory Process – Climate Change and Health Adaptation Program for Northern First Nations and Inuit in Canada

    Directory of Open Access Journals (Sweden)

    Diane McClymont Peace

    2012-05-01

    Full Text Available Objectives: Health Canada's Program for Climate Change and Health Adaptation in Northern First Nation and Inuit Communities is unique among Canadian federal programs in that it enables community-based participatory research by northern communities. Study design: The program was designed to build capacity by funding communities to conduct their own research in cooperation with Aboriginal associations, academics, and governments; that way, communities could develop health-related adaptation plans and communication materials that would help in adaptation decision-making at the community, regional, national and circumpolar levels with respect to human health and a changing environment. Methods: Community visits and workshops were held to familiarize northerners with the impacts of climate change on their health, as well as methods to develop research proposals and budgets to meet program requirements. Results: Since the launch of the Climate Change and Health Adaptation Program in 2008, Health Canada has funded 36 community projects across Canada's North that focus on relevant health issues caused by climate change. In addition, the program supported capacity-building workshops for northerners, as well as a Pan-Arctic Results Workshop to bring communities together to showcase the results of their research. Results include: numerous films and photo-voice products that engage youth and elders and are available on the web; community-based ice monitoring, surveillance and communication networks; and information products on land, water and ice safety, drinking water, food security and safety, and traditional medicine. Conclusions: Through these efforts, communities have increased their knowledge and understanding of the health effects related to climate change and have begun to develop local adaptation strategies.

  2. Community-based Participatory Process – Climate Change and Health Adaptation Program for Northern First Nations and Inuit in Canada

    Science.gov (United States)

    Peace, Diane McClymont; Myers, Erin

    2012-01-01

    Objectives Health Canada's Program for Climate Change and Health Adaptation in Northern First Nation and Inuit Communities is unique among Canadian federal programs in that it enables community-based participatory research by northern communities. Study design The program was designed to build capacity by funding communities to conduct their own research in cooperation with Aboriginal associations, academics, and governments; that way, communities could develop health-related adaptation plans and communication materials that would help in adaptation decision-making at the community, regional, national and circumpolar levels with respect to human health and a changing environment. Methods Community visits and workshops were held to familiarize northerners with the impacts of climate change on their health, as well as methods to develop research proposals and budgets to meet program requirements. Results Since the launch of the Climate Change and Health Adaptation Program in 2008, Health Canada has funded 36 community projects across Canada's North that focus on relevant health issues caused by climate change. In addition, the program supported capacity-building workshops for northerners, as well as a Pan-Arctic Results Workshop to bring communities together to showcase the results of their research. Results include: numerous films and photo-voice products that engage youth and elders and are available on the web; community-based ice monitoring, surveillance and communication networks; and information products on land, water and ice safety, drinking water, food security and safety, and traditional medicine. Conclusions Through these efforts, communities have increased their knowledge and understanding of the health effects related to climate change and have begun to develop local adaptation strategies. PMID:22584509

  3. Research on workplace health promotion in the Nordic countries: a literature review, 1986-2008.

    Science.gov (United States)

    Torp, Steffen; Eklund, Leena; Thorpenberg, Stefan

    2011-09-01

    Workplace health promotion may include approaches focusing on behavioral change among employees and approaches with a holistic system-oriented thinking aiming at changing the physical, social and organizational factors of a setting. This literature review aimed to identify studies on workplace health promotion in the Nordic countries (Denmark, Finland, Iceland, Norway and Sweden), to describe when, where and how the studies were performed and to further analyze the use of settings approaches and empowerment processes. Using scientific literature databases, we found 1809 hits when searching for Nordic studies published from 1986 to 2008 with the search term health promotion. Of these, 116 studies were related to workplace health promotion and 33 included interventions. We used content analysis to analyze the abstracts of all articles and the full articles of the intervention studies. Most studies were performed in Sweden and Finland. The focus was mainly on behavioral change rather than on holistic health promotion as defined by the Ottawa Charter for Health Promotion. This was especially obvious for the intervention studies. In addition to the intervention studies using non-settings approaches with top-down driven behavioral change, we identified studies with participatory settings approaches aimed at changing the setting. We categorized relatively few studies as having a non-participatory settings approach. The studies aiming specifically at improving employees' empowerment were evenly distributed between the categories market-oriented persuasion of empowerment, therapeutic empowerment and empowerment as a liberal management strategy. More studies on workplace health promotion using empowering and participatory settings approaches are needed in the Nordic countries, and a more theory-based approach towards this research field is needed.

  4. [Discovering pathways for health research in dealing with the social movement].

    Science.gov (United States)

    Smeke, E L

    1993-01-01

    This article is about methodology for scientific research in health, where the researcher is an important part of the object of investigation. The implementation of a broad-based Health Reform in Brazil depends on the involvement of users. It is important to guarantee these social rights. Many experiences sharing this concern are going on in this country. Still, research on the relationship between institutional work in health and the Social Movement lacks a predefined methodology. Therefore, the main objectives of this study are the following: to contribute to the discussion of possible ways of approaching the mechanisms of relationships between health and users of health services, and to collaborate with the development of the citizenship process. This work was done through theoretical research on participatory methodology and "action-based research". The following aspects are particularly important: definition of the object of study, self-positioning by the researcher, subjective explanations, documentary surveys and interviews for case studies, and feedback to theory. Finally, the author concludes that this methodology allows for an understanding of some mechanisms that explain the relationship between macro- and micro-structural analyses. In addition, one also observes a maturation process in the research protagonists.

  5. Participatory Design with Dyslectics

    DEFF Research Database (Denmark)

    Vangeli, Panagiota; Stage, Jan

    2017-01-01

    Participatory Design has been used successfully in many projects but the question is how participatory design works with people with a cognitive disorder like dyslexia. In this study, we analyzed observations of participatory design sessions with dyslectic participants for developing designs...... of a reading software application by applying two participatory design methods: the IDEAS and CI methods. Furthermore, we conducted online surveys to gather information on dyslectics participants’ and their special-education teachers’ opinion regarding the participatory design process, methods and final...... designs. The results indicate that participatory design works effectively with dyslectic people provided the participation of Proxy Users to represent dyslectics, when it is necessary, the participation of an experienced on dyslexia facilitator who has the knowledge to address incidents caused due...

  6. What Policy Actors Seek for: Reciprocal Misunderstanding of Objectives of Participatory Decision Making

    Directory of Open Access Journals (Sweden)

    Birutė PITRĖNAITĖ-ŽILĖNIENĖ

    2013-12-01

    Full Text Available The goal of this research is to explore different policy actors’ attitudes towards participation in public decision making. The paper examines objectives of external participants’ involvement and compares various participants’ judgements on the process and results of participation. We screened operation of formal networks of participatory decision making at the Lithuanian Ministries of Health and Education & Science. The research revealed the willingness of decision makers to allow different stakeholders to contribute to the solution of problems of diverse character. The results of interviews manifested reciprocal miscommunication towards objectives and results of participatory decision making. Public administrators demonstrated their high willingness to acquire expertise, while external participants sought to present specific interests and got them implemented as well. However, it has to be admitted that decision makers are not committed to the results generated by stakeholders.

  7. Workforce development to embed mental health promotion research and evaluation into organisational practice.

    Science.gov (United States)

    Joss, Nerida; Keleher, Helen

    2007-12-01

    This project engaged a mental health rehabilitation organisation in health promotion research and development to build its capacity in evaluation research. Participatory research methods were used. Staff skills development occurred through training in research and evaluation methods applied to an evaluation project in mental health promotion that they conducted. All staff had some previous training in research but little, if any, experience of research practice. Staff demonstrated commitment to the idea of embedding research practice into the organisation to strengthen its ability to demonstrate program outcomes. However, the realities of work demands eventually took precedence over the tasks involved in the research process. Staff commitment, knowledge and skills are not sufficient if an organisation lacks the capacity to provide the resources or foster support for a research culture. The health promotion capacity-building framework is relevant for efforts to build health promotion research into mental health organisations. This project demonstrated that workforce development to build the capacity for mental health promotion is more likely to be successful if it is embedded into organisational strategy and culture, has sufficient resources allocated including staff time, and is supported by management.

  8. Collaboration Strategies in Nontraditional Community-Based Participatory Research Partnerships: Lessons From an Academic–Community Partnership With Autistic Self-Advocates

    Science.gov (United States)

    Nicolaidis, Christina; Raymaker, Dora; McDonald, Katherine; Dern, Sebastian; Ashkenazy, Elesia; Boisclair, Cody; Robertson, Scott; Baggs, Amanda

    2012-01-01

    Background Most community-based participatory research (CBPR) projects involve local communities defined by race, ethnicity, geography, or occupation. Autistic self-advocates, a geographically dispersed community defined by disability, experience issues in research similar to those expressed by more traditional minorities. Objectives We sought to build an academic–community partnership that uses CBPR to improve the lives of people on the autistic spectrum. Methods The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) includes representatives from academic, self-advocate, family, and professional communities. We are currently conducting several studies about the health care experiences and well-being of autistic adults. Lessons Learned We have learned a number of strategies that integrate technology and process to successfully equalize power and accommodate diverse communication and collaboration needs. Conclusions CBPR can be conducted successfully with autistic self-advocates. Our strategies may be useful to other CBPR partnerships, especially ones that cannot meet in person or that include people with diverse communication needs. PMID:21623016

  9. Regional health workforce planning through action research: lessons for commissioning health services from a case study in Far North Queensland.

    Science.gov (United States)

    Panzera, Annette June; Murray, Richard; Stewart, Ruth; Mills, Jane; Beaton, Neil; Larkins, Sarah

    2016-01-01

    Creating a stable and sustainable health workforce in regional, rural and remote Australia has long been a challenge to health workforce planners, policy makers and researchers alike. Traditional health workforce planning is often reactive and assumes continuation of current patterns of healthcare utilisation. This demonstration project in Far North Queensland exemplifies how participatory regional health workforce planning processes can accurately model current and projected local workforce requirements. The recent establishment of Primary Health Networks (PHNs) with the intent to commission health services tailored to individual healthcare needs underlines the relevance of such an approach. This study used action research methodology informed by World Health Organization (WHO) systems thinking. Four cyclical stages of health workforce planning were followed: needs assessment; health service model redesign; skills-set assessment and workforce redesign; and development of a workforce and training plan. This study demonstrated that needs-based loco-regional health workforce planning can be achieved successfully through participatory processes with stakeholders. Stronger health systems and workforce training solutions were delivered by facilitating linkages and planning processes based on community need involving healthcare professionals across all disciplines and sectors. By focusing upon extending competencies and skills sets, local health professionals form a stable and sustainable local workforce. Concrete examples of initiatives generated from this process include developing a chronic disease inter-professional teaching clinic in a rural town and renal dialysis being delivered locally to an Aboriginal community. The growing trend of policy makers decentralising health funding, planning and accountability and rising health system costs increase the future utility of this approach. This type of planning can also assist the new PHNs to commission health services

  10. Transgressive Practices in Participatory Action Research within the Context of Projects as a System of Governance

    DEFF Research Database (Denmark)

    Juhlin, Sharmila Maria Holmstrøm; Thingstrup, Signe Hvid

    2012-01-01

    institutional and discursive presence of projects in people’s everyday lives affects the possibilities of action research to engage in meaningful democratic and transgressive practises with its participants. When does participatory action research become yet another social technique and when does it have...... the potential to challenge dominating social hierarchies and contribute to social change? We will discuss these questions based on findings from two empirical action research projects from our own work in the multicultural field. In one project, teachers and researcher engage in the development of multicultural...

  11. Participatory Research in a Mental Health Clubhouse.

    Science.gov (United States)

    Townsend, Elizabeth; Birch, Diane E.; Langley, Jack; Langille, Lynn

    2000-01-01

    A 2-year ethnographic study of a clubhouse for people with long-term mental illness involved club members in particpatory research. The study explored questions of what is research and who drives it. A critical perspective on the social organization of knowledge and power inequities between participants was highlighted. (SK)

  12. participatory development of a minimum dataset for the khayelitsha ...

    African Journals Online (AJOL)

    This dataset was integrated with data requirements at ... model for defining health information needs at district level. This participatory process has enabled health workers to appraise their .... of reproductive health, mental health, disability and community ... each chose a facilitator and met in between the forum meetings.

  13. Analysing the past and exploring the future of sustainable biomass. Participatory stakeholder dialogue and technological innovation systems research

    NARCIS (Netherlands)

    Breukers, S.; Hisschemöller, M.; Cuppen, E.; Suurs, R.

    2014-01-01

    This paper explores the potential of combining technological innovation systems research with a participatory stakeholder dialogue, using empirical material from a dialogue on the options of sustainable biomass in the Netherlands and several historical studies into the emerging Dutch biomass

  14. Partnering with consumers to develop and evaluate a Vietnamese Dementia Talking-Book to support low health literacy: a qualitative study incorporating codesign and participatory action research

    Science.gov (United States)

    Goeman, Dianne; Michael, J; King, J; Luu, Huy; Emmanuel, Claire; Koch, S

    2016-01-01

    Objective The aim of the Vietnamese Dementia talking-book was to address low health literacy in older people of Vietnamese background living with dementia through the provision of an online resource to help individuals, their families and carers better understand and manage this condition and provide information about available dementia services. Design This qualitative study used codesign and participatory action research to develop and refine the talking-book in consultation with expert stakeholders, a consumer advocacy group and the Vietnamese community to assess its utility and ensure cultural and linguistic appropriateness and relevance. Participants 59 members of the Vietnamese community, 11 stakeholders from community health services and ethnic agencies, consumer advocacy groups and the research team participated in the codesign and refinement of the talking-book. 22 members of the Vietnamese community appraised the final product. Setting Vietnamese community planned activity groups in the Western, Northern and Southern suburbs of Melbourne, Australia. Results Our codesign study outlines the process required to develop a Vietnamese Dementia Talking-Book resource partnering with consumers and expert stakeholders to identify consumer need, selection of the content and appropriate language level, construction of the book, measuring acceptability of the talking-book, modification based on feedback and production and dissemination. Feedback on the final version of the talking-book revealed widespread consensus that the book enhanced the knowledge of members of the Vietnamese community in regard to understanding dementia and navigation and accessing of available services. Conclusions This free internationally available online Vietnamese Dementia Talking-Book facilitates improved dementia-related health literacy in the Vietnamese community. The book also serves as a tool to facilitate the provision of care to Vietnamese people living with memory loss by assisting

  15. "Tension" in South Asian women: developing a measure of common mental disorder using participatory methods.

    Science.gov (United States)

    Karasz, Alison; Patel, Viraj; Kabita, Mahbhooba; Shimu, Parvin

    2013-01-01

    Although common mental disorder (CMD) is highly prevalent among South Asian immigrant women, they rarely seek mental treatment. This may be owing in part to the lack of conceptual synchrony between medical models of mental disorder and the social models of distress common in South Asian communities. Furthermore, common mental health screening and diagnostic measures may not adequately capture distress in this group. Community-based participatory research (CBPR) is ideally suited to help address measurement issues in CMD as well as to develop culturally appropriate treatment models. To use participatory methods to identify an appropriate, culturally specific mental health syndrome and develop an instrument to measure this syndrome. We formed a partnership between researchers, clinicians, and community members. The partnership selected a culturally specific model of emotional distress/illness, "tension," as a focus for further study. Partners developed a scale to measure Tension and tested the new scale on 162 Bangladeshi immigrant women living in the Bronx. The 24-item "Tension Scale" had high internal consistency (α = 0.83). On bivariate analysis, the scale significantly correlated in the expected direction with depressed as measured by the Patient Health Questionnaire (PHQ-2), age, education, self-rated health, having seen a physician in the past year, and other variables. Using participatory techniques, we created a new measure designed to assess CMD in an isolated immigrant group. The new measure shows excellent psychometric properties and will be helpful in the implementation of a community-based, culturally synchronous intervention for depression. We describe a useful strategy for the rapid development and field testing of culturally appropriate measures of mental distress and disorder.

  16. Distinctiveness and Sense of Community in the Historical Center of Naples: A Piece of Participatory Action Research

    Science.gov (United States)

    Arcidiacono, Caterina; Procentese, Fortuna

    2005-01-01

    Inspired by the impact of an increase in tourism in the Old Center of Naples, Fondazione Laboratorio Mediterraneo, a nonprofit organization that promotes sustainable town development and encourages participation, has undertaken the participatory action research described in this article. The inhabitants' sense of community (McMillan & Chavis,…

  17. Collaborative Research in Child Welfare: A Rationale for Rigorous Participatory Evaluation Designs to Promote Sustained Systems Change

    Science.gov (United States)

    Collins-Camargo, Crystal; Shackelford, Kim; Kelly, Michael; Martin-Galijatovic, Ramie

    2011-01-01

    Expansion of the child welfare evidence base is a major challenge. The field must establish how organizational systems and practice techniques yield outcomes for children and families. Needed research must be grounded in practice and must engage practitioners and administrators via participatory evaluation. The extent to which successful practices…

  18. Using a community-based participatory research approach to develop a faith-based obesity intervention for African American children.

    Science.gov (United States)

    Davis, Dawnavan S; Goldmon, Moses V; Coker-Appiah, Dionne S

    2011-11-01

    Childhood obesity is a major epidemic, with African American (AA) children aged 6 to 11 years experiencing increased burden. The AA faith community has numerous assets that point to the need for the intersection of faith and health to address obesity-related racial disparities. The purpose of the Our Bodies, God's Temples (OBGT) study was to examine diet, physical activity, and body image behaviors among AA children aged 6 to 11 years; receptivity to a faith-based obesity intervention among AA children, parents, and church leaders; and strengths and barriers of implementing a faith-based obesity curriculum in the Sunday school setting. A community-based participatory research approach was used to develop an obesity intervention to be integrated into the church Sunday school setting for AA children. A Community Advisory Network worked with researchers to develop a 12-week culturally appropriate faith-based obesity intervention. Future work will test the effectiveness of the newly created curriculum on obesity-related outcomes in AA children.

  19. Processes, barriers and facilitators to implementation of a participatory ergonomics program among eldercare workers.

    Science.gov (United States)

    Rasmussen, Charlotte Diana Nørregaard; Lindberg, Naja Klærke; Ravn, Marie Højbjerg; Jørgensen, Marie Birk; Søgaard, Karen; Holtermann, Andreas

    2017-01-01

    This study aimed to investigate the processes of a participatory ergonomics program among 594 eldercare workers with emphasis on identified risk factors for low back pain and solutions, and reveal barriers and facilitators for implementation. Sixty-nine per cent of the identified risk factors were physical ergonomic, 24% were organisational and 7% were psychosocial risk factors. Most solutions were organisational (55%), followed by physical (43%) and psychosocial solutions (2%). Internal factors (e.g. team or management) constituted 47% of the barriers and 75% of the facilitators. External factors (e.g. time, financial resources, collaboration with resident or relatives) constituted 53% of the barriers and 25% of the facilitators. This study revealed the processes and implementation of a participatory ergonomics program among eldercare workers. The findings can be transferred to workers, workplaces, health and safety professionals, and researchers to improve future participatory ergonomics programs. Copyright © 2016 The Authors. Published by Elsevier Ltd.. All rights reserved.

  20. A Systematic Review of Community-Based Participatory Research to Enhance Clinical Trials in Racial and Ethnic Minority Groups

    Science.gov (United States)

    De Las Nueces, Denise; Hacker, Karen; DiGirolamo, Ann; Hicks, LeRoi S

    2012-01-01

    Objective To examine the effectiveness of current community-based participatory research (CBPR) clinical trials involving racial and ethnic minorities. Data Source All published peer-reviewed CBPR intervention articles in PubMed and CINAHL databases from January 2003 to May 2010. Study Design We performed a systematic literature review. Data Collection/Extraction Methods Data were extracted on each study's characteristics, community involvement in research, subject recruitment and retention, and intervention effects. Principle Findings We found 19 articles meeting inclusion criteria. Of these, 14 were published from 2007 to 2010. Articles described some measures of community participation in research with great variability. Although CBPR trials examined a wide range of behavioral and clinical outcomes, such trials had very high success rates in recruiting and retaining minority participants and achieving significant intervention effects. Conclusions Significant publication gaps remain between CBPR and other interventional research methods. CBPR may be effective in increasing participation of racial and ethnic minority subjects in research and may be a powerful tool in testing the generalizability of effective interventions among these populations. CBPR holds promise as an approach that may contribute greatly to the study of health care delivery to disadvantaged populations. PMID:22353031

  1. Sexual health is dead in my body: participatory assessment of sexual health determinants by refugees, asylum seekers and undocumented migrants in Belgium and The Netherlands.

    Science.gov (United States)

    Keygnaert, Ines; Vettenburg, Nicole; Roelens, Kristien; Temmerman, Marleen

    2014-05-01

    Although migrants constitute an important proportion of the European population, little is known about migrant sexual health. Existing research mainly focuses on migrants' sexual health risks and accessibility issues while recommendations on adequate sexual health promotion are rarely provided. Hence, this paper explores how refugees, asylum seekers and undocumented migrants in Belgium and The Netherlands define sexual health, search for sexual health information and perceive sexual health determinants. Applying Community-based Participatory Research as the overarching research approach, we conducted 223 in-depth interviews with refugees, asylum seekers and undocumented migrants in Belgium and The Netherlands. The Framework Analysis Technique was used to analyse qualitative data. We checked the extensiveness of the qualitative data and analysed the quantitative socio-demographic data with SPSS. Our results indicate that gender and age do not appear to be decisive determinants. However, incorporated cultural norms and education attainment are important to consider in desirable sexual health promotion in refugees, asylum seekers and undocumented migrants in Belgium and The Netherlands. Furthermore, our results demonstrate that these migrants have a predominant internal health locus of control. Yet, most of them feel that this personal attitude is hugely challenged by the Belgian and Dutch asylum system and migration laws which force them into a structural dependent situation inducing sexual ill-health. Refugees, asylum seekers and undocumented migrants in Belgium and The Netherlands are at risk of sexual ill-health. Incorporated cultural norms and attained education are important determinants to address in desirable sexual health promotion. Yet, as their legal status demonstrates to be the key determinant, the prime concern is to alter organizational and societal factors linked to the Belgian and Dutch asylum system. Refugees, asylum seekers and undocumented migrants

  2. Researching health inequalities with Community Researchers: practical, methodological and ethical challenges of an 'inclusive' research approach.

    Science.gov (United States)

    Salway, Sarah; Chowbey, Punita; Such, Elizabeth; Ferguson, Beverly

    2015-01-01

    Public health research sometimes uses members of communities as researchers. These are called Community Researchers. The advantage of using Community Researchers is that it enables people who live in communities to participate in research by designing the research, gathering data and being involved in analysis. This 'participatory' approach also has the potential to reach communities that might otherwise not be included in research. There are few studies that report the experiences of Community Researchers who take part in such research. This study helps fill this gap by exploring the issues and challenges faced by Community Researchers involved in a study of health and poverty in ethnically mixed areas of east London, UK. Through the accounts of 12 researchers, the study reveals that being a community 'insider' had advantages: many felt they had been able to gain the trust of respondents and access people for the research that would have otherwise been missed. The role of Community Researcher was, however, difficult to manage with some researchers feeling burdened by their role and the increased knowledge they had about the lives of those in their community. In addition to the personal challenges for the Community Researchers, the findings raise various ethical and methodological issues that need consideration in participatory research. Background Inclusive research approaches are increasingly employed by public health researchers. Recent methodological development includes the engagement of Community Researchers (CRs), who use their knowledge and networks to facilitate research with the community with which they identify. Few studies have explored the experiences of CRs in the research process, an important element of any comprehensive assessment of the pros and cons of such research endeavours. We report here on the experiences of CRs engaged in a study of health inequalities and poverty in ethnically diverse and disadvantaged areas of London, UK. Methods We

  3. The Development of Learning Activities in Srijanwittaya General Buddhist Scripture School: A Participatory Action Research

    Directory of Open Access Journals (Sweden)

    Phrachakrapol Pongsir

    2017-06-01

    Full Text Available The objectives of this research were to study: 1 the former and present conditions, problem, expectations, possible alternative solutions to solve problems, achieve expectations and the choices made in formulating an action plan for development of learning activity. 2 the results of both expected and unexpected changes from individual, group and organization, also the new knowledge created from learning by doing processes with participatory action research. The 17 participants consist of administrators, teachers, school committee and 5 stakeholders. Such as administrative officer, caretaker, community leader and representative alumni. Research instruments included an observation form, in-depth interview, and document examination. The research finding were as follows: Srijanwittaya general buddhist scripture school lack of equipment for teaching and learning and modern teaching aids. Teachers have not been development for 21st century learning skills. These were the cause of: bored lesson, low student achievement and school has not passed the third quality evaluation by the office for National Education Standards and Quality Assessment (Public Organization Researcher focus on solving problem by 4 projects were Follows: 1 promotion and development of teacher project 2 developing school environment project. 3 encourage collaboration for school development project and 4 improving manage potential for school based management project. After improving found that Srijanwittaya general buddhist scripture school, Loei province passed the quality evaluation and higher students achievement. Moreover, researcher and participants were learnt from research practice such as knowledge and experience. The new knowledge had 3 characteristics as follows: 1 new knowledge on participatory performance of school context 2 new knowledge by 5 steps of participle learning principal and 3 new knowledge by lesson learned visualizing from “SRIJAN Model”.

  4. Health, Traffic, and Environmental Justice: Collaborative Research and Community Action in San Francisco, California

    Science.gov (United States)

    Sciammas, Charlie; Seto, Edmund; Bhatia, Rajiv; Rivard, Tom

    2009-01-01

    Health impacts on neighborhood residents from transportation systems can be an environmental justice issue. To assess the effects of transportation planning decisions, including the construction of an intraurban freeway, on residents of the Excelsior neighborhood in southeast San Francisco, PODER (People Organizing to Demand Environmental and Economic Rights), a local grassroots environmental justice organization; the San Francisco Department of Public Health; and the University of California, Berkeley, collaborated on participatory research. We used our findings regarding traffic-related exposures and health hazards in the area to facilitate community education and action to address transportation-related health burdens on neighborhood residents. PMID:19890147

  5. Evaluation of super-link system theory for spinal cord injury patients using participatory action research in a rehabilitation hospital.

    Science.gov (United States)

    Chen, Hsiao-Yu; Wu, Tzu-Jung; Cheng, Mei-Li; Sung, Hsi-Hui

    2012-01-01

    The purpose of this study was to integrate and evaluate the spinal cord injury rehabilitation nursing theory named Super-Link System Theory using participatory action research. Data were collected from October 2007 to September 2008 in a rehabilitation hospital by means of interviews, participant observations, documentary resources, case conferences and reports, and participants' self-reflective inquiries. The Super-Link System Theory was introduced to 31 rehabilitation nurses. The nurses selected a key reference group including the researcher to facilitate the participatory action research process to implement and evaluate the theory. Data were analyzed using content analysis. The findings shows that several key concepts were clarified and specific nursing interventions were identified. Furthermore, an integrated link system from the hospital to the community through both rehabilitation nurses and discharge planners was established. The study demonstrated an evidence base for an evolving theory of care, and empowered nurses to make sustainable changes to their practice. © 2012 Association of Rehabilitation Nurses.

  6. Participatory evaluation for environmental indicators

    NARCIS (Netherlands)

    Goma, H.C.; Rahim, K.; Nangendo, G.; Riley, J.; Stein, A.

    2001-01-01

    Participatory research has emerged as a powerful tool to identify agro-ecosystem indicators in developing countries. Indigenous knowledge, thus generated complements scientific information to the benefit of all stakeholders. This paper demonstrates the value of participating with farmers and hunters

  7. A successful model for longitudinal community-engaged health research: the 2040 Partners for Health Student Program.

    Science.gov (United States)

    Redman, Romany M; Reinsvold, Magdalena C; Reddy, Anireddy; Bennett, Paige E; Hoerauf, Janine M; Puls, Kristina M; Ovrutsky, Alida R; Ly, Alexandra R; White, Gregory; McNeil, Owetta; Meredith, Janet J

    2017-06-01

    Community-based participatory research [CBPR] is an emerging approach to collaborative research aimed at creating locally effective and sustainable interventions. The 2040 Partners for Health student program was developed as a unique model of longitudinal CBPR. Analysis of this program and its components illuminates both the challenges and the opportunities inherent in community engagement. The program rests on a foundation of a community-based, non-profit organization and a supportive academic university centre. Inter-professional health students and community members of underserved populations work together on different health projects by employing an adapted CBPR methodology. Three successful examples of sustainable CBPR projects are briefly described. The three projects are presented as primary outcomes resulting from this model. Benefits and challenges of the model as an approach to community-engaged research are discussed as well as secondary benefits of student participation. The 2040 Partners for Health student program represents a successful model of CBPR, illuminating common challenges and reiterating the profound value of community-engaged research. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  8. "Bounded" empowerment: analyzing tensions in the practice of youth-led participatory research in urban public schools.

    Science.gov (United States)

    Ozer, Emily J; Newlan, Sami; Douglas, Laura; Hubbard, Elizabeth

    2013-09-01

    This multi-method study examines tensions in the practice of youth-led participatory research (YPAR) in urban high schools among 15 semester-cohorts. Student participants in the present study were 77 ethnically diverse youth from four high schools in a major metropolitan school district. Data were gathered using systematic classroom observations, interviews with teachers and students involved in the projects, and participant observation. The two most commonly-constrained phases of the YPAR project were issue selection and action steps. A central tension in the issue selection phase for projects enacted across multiple semester cohorts was the tension between original inquiry and "traction:" Sticking with the same topic enabled sustained building of strategic alliances and expertise for making change, but limited the incoming cohort's power to define the problem to be addressed. In further analyses, we identified processes that promoted student power despite continuity-related constraints-teachers' framing and buy-in strategies, "micro-power" compensation, and alignment of students' interests with the prior cohort-as well as constraints in other phases of the projects. This study's findings regarding the promotion of youth power in the face of constraints advance the integration of theory and practice in youth-led research and have implications for participatory research more broadly.

  9. Using Photovoice as a Community Based Participatory Research Tool for Changing Water, Sanitation, and Hygiene Behaviours in Usoma, Kenya

    Directory of Open Access Journals (Sweden)

    Elijah Bisung

    2015-01-01

    Full Text Available Recent years have witnessed an increase in the use of community based participatory research (CBPR tools for understanding environment and health issues and facilitating social action. This paper explores the application and utility of photovoice for understanding water, sanitation, and hygiene (WASH behaviours and catalysing community led solutions to change behaviours. Between June and August 2013, photovoice was conducted with eight (8 women in Usoma, a lakeshore community in Western Kenya with a follow-up community meeting (baraza in May 2014 to discuss findings with the community members and government officials. In the first part of the study, photovoice one-on-one interviews were used to explore local perceptions and practices around water-health linkages and how the ecological and socio-political environment shapes these perceptions and practices. This paper, which is the second component of the study, uses photovoice group discussions to explore participants’ experiences with and (reaction to the photographs and the photovoice project. The findings illustrate that photovoice was an effective CBPR methodology for understanding behaviours, creating awareness, facilitating collective action, and engaging with local government and local health officials at the water-health nexus.

  10. Perceptions of Empowerment Within and Across Partnerships in Community-Based Participatory Research: A Dyadic Interview Analysis.

    Science.gov (United States)

    Paradiso de Sayu, Rebecca; Chanmugam, Amy

    2016-01-01

    Although the concept of empowerment is a key principle of community-based participatory research (CBPR), little is known about how academic and community partners perceive empowerment during a CBPR process. CBPR partners' perceptions of the process were explored using semi-structured interviews with both partners in 10 CBPR partnerships that had completed projects addressing social determinants of health. Dyadic interview analysis was employed to understand dynamics within and across partnerships. Five partnerships showed no differences in perceptions of empowerment. Four had minor discrepancies. Only one partnership varied considerably between partners, where the community partner perceived less empowerment regarding determining the study topic and overall control, influence, and respect throughout the process. This article discusses implications of findings for CBPR. Evaluating partners' perceived empowerment throughout a CBPR project might reveal areas to adjust, as not all projects with quantifiably successful outcomes involve processes that are successful in terms of empowerment. © The Author(s) 2015.

  11. Factors influencing performance of health workers in the management of seriously sick children at a Kenyan tertiary hospital--participatory action research.

    Science.gov (United States)

    Irimu, Grace W; Greene, Alexandra; Gathara, David; Kihara, Harrison; Maina, Christopher; Mbori-Ngacha, Dorothy; Zurovac, Dejan; Migiro, Santau; English, Mike

    2014-02-07

    Implementation of World Health Organization case management guidelines for serious childhood illnesses remains a challenge in hospitals in low-income countries. Facilitators of and barriers to implementation of locally adapted clinical practice guidelines (CPGs) have not been explored. This ethnographic study based on the theory of participatory action research (PAR) was conducted in Kenyatta National Hospital, Kenya's largest teaching hospital. The primary intervention consisted of dissemination of locally adapted CPGs. The PRECEDE-PROCEED health education model was used as the conceptual framework to guide and examine further reinforcement activities to improve the uptake of the CPGs. Activities focussed on introduction of routine clinical audits and tailored educational sessions. Data were collected by a participant observer who also facilitated the PAR over an eighteen-month period. Naturalistic inquiry was utilized to obtain information from all hospital staff encountered while theoretical sampling allowed in-depth exploration of emerging issues. Data were analysed using interpretive description. Relevance of the CPGs to routine work and emergence of a champion of change facilitated uptake of best-practices. Mobilization of basic resources was relatively easily undertaken while activities that required real intellectual and professional engagement of the senior staff were a challenge. Accomplishments of the PAR were largely with the passive rather than active involvement of the hospital management. Barriers to implementation of best-practices included i) mismatch between the hospital's vision and reality, ii) poor communication, iii) lack of objective mechanisms for monitoring and evaluating quality of clinical care, iv) limited capacity for planning strategic change, v) limited management skills to introduce and manage change, vi) hierarchical relationships, and vii) inadequate adaptation of the interventions to the local context. Educational interventions

  12. Knowledge Shared: Participatory Evaluation in Development ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    Knowledge Shared: Participatory Evaluation in Development Cooperation ... El Salvador, Ghana, India, Indonesia, Kenya, Mexico, Nepal, and St Vincent, the book is a ... Linking research to urban planning at the ICLEI World Congress 2018.

  13. 77 FR 43850 - National Institute on Minority Health and Health Disparities; Notice of Closed Meeting

    Science.gov (United States)

    2012-07-26

    ... and Health Disparities Special Emphasis Panel; NIMHD Community-Based Participatory Research (CBPR... Review Officer, National Institute on Minority Healthand Health Disparities, 6707 Democracy Blvd., Suite...

  14. A participatory study of teenagers and young adults views on access and participation in cancer research.

    Science.gov (United States)

    Taylor, Rachel M; Solanki, Anita; Aslam, Natasha; Whelan, Jeremy S; Fern, Lorna A

    2016-02-01

    The purpose of this study was to elicit young people's views on access and participation in cancer research. Eight young people aged 18-25 years with a previous cancer diagnosis aged 15-24 participated in a one day workshop utilising participatory methodology. The workshop consisted of four exercises: role play/scene setting; focus group examining thoughts and opinions of research access and participation; individual reflection on access to different types of research; and creative interpretation of the workshop. Further consultation with 222 young people with cancer was conducted using an electronic survey. Three themes emerged: • Patient choice: Young people thought it was their right to know all options about available research. Without knowledge of all available studies they would be unable to make an informed choice about participation. • Role of healthcare professionals as facilitators/barriers: Young people suggested non-clinical healthcare professionals such as social workers and youth support coordinators may be more suited to approaching young people about participation in psychosocial and health services research. • Value of the research: The what, when and how information was delivered was key in relaying the value of the study and assisting young people in their decision to participate. Further consultation showed approximately 70% wanted to find out about all available research. However, one third trusted healthcare professionals to decide which research studies to inform them of. Effective ways to support healthcare professionals approaching vulnerable populations about research are needed to ensure young people are empowered to make informed choices about research participation. Copyright © 2015 Elsevier Ltd. All rights reserved.

  15. Promoting Mental Health and Community Participation: A study on participatory arts practice, creativity and play in the city of Buenos Aires, Argentina

    Directory of Open Access Journals (Sweden)

    C. L. Bang

    2015-07-01

    Full Text Available The purpose of this paper is to describe and analyze a participative health experience involving art, creativity and play, in articulation with the strategy of Comprehensive Primary Health Care focused on mental health. This experience is conducted by a network of institutions in Buenos Aires City.This is an exploratory and descriptive case study based on qualitative research methodologies. From an ethnographic perspective, the fieldwork revolved around interviews and participant observation records. The systematization process followed qualitative analysis content techniques. The outcomes describe a practice cored in intersectoral work, community participation, occupation of public space, creation of community gathering spaces and conformation of solidarity ties for addressing complex psychosocial issues. The main participatory processes focused on community organization and collective artistic creations are described. It is concluded that this experience shows great transforming potential, creating community conditions suitable for joint decision making on the health- illness care process itself.

  16. Evaluating the implementation process of a participatory organizational level occupational health intervention in schools.

    Science.gov (United States)

    Schelvis, Roosmarijn M C; Wiezer, Noortje M; Blatter, Birgitte M; van Genabeek, Joost A G M; Oude Hengel, Karen M; Bohlmeijer, Ernst T; van der Beek, Allard J

    2016-12-01

    The importance of process evaluations in examining how and why interventions are (un) successful is increasingly recognized. Process evaluations mainly studied the implementation process and the quality of the implementation (fidelity). However, in adopting this approach for participatory organizational level occupational health interventions, important aspects such as context and participants perceptions are missing. Our objective was to systematically describe the implementation process of a participatory organizational level occupational health intervention aimed at reducing work stress and increasing vitality in two schools by applying a framework that covers aspects of the intervention and its implementation as well as the context and participants perceptions. A program theory was developed, describing the requirements for successful implementation. Each requirement was operationalized by making use of the framework, covering: initiation, communication, participation, fidelity, reach, communication, satisfaction, management support, targeting, delivery, exposure, culture, conditions, readiness for change and perceptions. The requirements were assessed by quantitative and qualitative data, collected at 12 and 24 months after baseline in both schools (questionnaire and interviews) or continuously (logbooks). The intervention consisted of a needs assessment phase and a phase of implementing intervention activities. The needs assessment phase was implemented successfully in school A, but not in school B where participation and readiness for change were insufficient. In the second phase, several intervention activities were implemented at school A, whereas this was only partly the case in school B (delivery). In both schools, however, participants felt not involved in the choice of intervention activities (targeting, participation, support), resulting in a negative perception of and only partial exposure to the intervention activities. Conditions, culture and

  17. Evaluating the implementation process of a participatory organizational level occupational health intervention in schools

    Directory of Open Access Journals (Sweden)

    Roosmarijn M. C. Schelvis

    2016-12-01

    Full Text Available Abstract Background The importance of process evaluations in examining how and why interventions are (un successful is increasingly recognized. Process evaluations mainly studied the implementation process and the quality of the implementation (fidelity. However, in adopting this approach for participatory organizational level occupational health interventions, important aspects such as context and participants perceptions are missing. Our objective was to systematically describe the implementation process of a participatory organizational level occupational health intervention aimed at reducing work stress and increasing vitality in two schools by applying a framework that covers aspects of the intervention and its implementation as well as the context and participants perceptions. Methods A program theory was developed, describing the requirements for successful implementation. Each requirement was operationalized by making use of the framework, covering: initiation, communication, participation, fidelity, reach, communication, satisfaction, management support, targeting, delivery, exposure, culture, conditions, readiness for change and perceptions. The requirements were assessed by quantitative and qualitative data, collected at 12 and 24 months after baseline in both schools (questionnaire and interviews or continuously (logbooks. Results The intervention consisted of a needs assessment phase and a phase of implementing intervention activities. The needs assessment phase was implemented successfully in school A, but not in school B where participation and readiness for change were insufficient. In the second phase, several intervention activities were implemented at school A, whereas this was only partly the case in school B (delivery. In both schools, however, participants felt not involved in the choice of intervention activities (targeting, participation, support, resulting in a negative perception of and only partial exposure to the

  18. Giving Student Groups a Stronger Voice: Using Participatory Research and Action (PRA) to Initiate Change to a Curriculum

    Science.gov (United States)

    O'Neill, Geraldine; McMahon, Sinead

    2012-01-01

    Traditional student feedback mechanisms have been criticised for being teacher-centred in design and, in particular, for their absence of transparent follow-up actions. In contrast, this study describes the process and the evaluation of a participatory research and action (PRA) approach used in an undergraduate physiotherapy degree. This approach…

  19. Utilizing Participatory Action Research to Foster Effective Family/School Collaboration at an Urban PreK-8 Catholic School

    Science.gov (United States)

    Shriberg, David; Schumacher, Ruth; McMahon, Kara C.; Flores, Sofia; Moy, Gregory E.; Swidzinski, Joanna; Tompkins, Nicole A.

    2012-01-01

    This paper describes a study focused on promoting culturally responsive collaboration practices at an urban preK-8 Catholic school. Using participatory action research (PAR) as its framework, a team of school stakeholders and university faculty and students from the psychology department partnered to create a participant-driven data collection and…

  20. Stakeholder involvement in stages of a participatory process illustrated in interior design cases

    DEFF Research Database (Denmark)

    Vink, Peter; van Rhijn, Gu; Seim, Rikke

    2008-01-01

    In a previous study (Vink et al., 2008) an overview was made of the involvement of different stakeholders in a participatory design process. In this paper this overview was used to describe four participatory design cases focused on improvising productivity, health, and comfort by interior design....... It appeared that this overview is useful to describe the involvement in participatory interior design projects. However, it can only serve as an initial benchmark as much is dependent on the specific case at hand....

  1. Participatory IT-support

    DEFF Research Database (Denmark)

    Kanstrup, Anne Marie; Bertelsen, Pernille

    2006-01-01

    Beyond the initial phases of systems design Participatory Design has potentiality to include operation and maintenance of IT systems in organizations. The paper presents this argument through reports from case studies of local IT-support coined ‘participatory IT-support’. The paper presents...

  2. Baseline Evaluation of a Participatory Mobile Health Intervention for Dengue Prevention in Sri Lanka

    Science.gov (United States)

    Lwin, May O.; Vijaykumar, Santosh; Lim, Gentatsu; Fernando, Owen Noel Newton; Rathnayake, Vajira Sampath; Foo, Schubert

    2016-01-01

    Challenges posed by infectious disease outbreaks have led to a range of participatory mobile phone-based innovations that use the power of crowdsourcing for disease surveillance. However, the dynamics of participatory behavior by crowds in such interventions have yet to be examined. This article reports results from a baseline evaluation of one…

  3. Participatory/problem-based methods and techniques for training in health and safety.

    Science.gov (United States)

    Rosskam, E

    2001-01-01

    More knowledgeable and trained people are needed in the area of occupational health, safety, and environment (OSHE) if work-related fatalities, accidents, and diseases are to be reduced. Established systems have been largely ineffective, with few employers taking voluntary measures to protect workers and the environment and too few labor inspectors available. Training techniques using participatory methods and a worker empowerment philosophy have proven value. There is demonstrated need for the use of education for action, promoting the involvement of workers in all levels of decision-making and problem-solving in the workplace. OSH risks particular to women s jobs are virtually unstudied and not addressed at policy levels in most countries. Trade unions and health and safety professionals need to demystify technical areas, empower workers, and encourage unions to dedicate special activities around women s jobs. Trained women are excellent motivators and transmitters of safety culture. Particular emphasis is given to train-the-trainer approaches.

  4. Confirming the Environmental Concerns of Community Members Utilizing Participatory-Based Research in the Houston Neighborhood of Manchester.

    Science.gov (United States)

    Sansom, Garett; Berke, Philip; McDonald, Thomas; Shipp, Eva; Horney, Jennifer

    2016-08-23

    In the last few decades, there has been an increase in community-based participatory research being conducted within the United States. Recent research has demonstrated that working with local community organizations, interest groups, and individuals can assist in the creation of, and sustainability in, health initiatives, adoption of emergency protocols, and potentially improve health outcomes for at-risk populations. However little research has assessed if communal concerns over environmental contaminants would be confirmed through environmental research. This cross-sectional study collected survey data and performed surface water analysis for heavy metals in a small neighborhood in Houston, TX, which is characterized by industrial sites, unimproved infrastructure, nuisance flooding, and poor air quality. Surveys were completed with 109 residents of the Manchester neighborhood. Water samples were taken from thirty zones within the neighborhood and assessed for arsenic (As), barium (Ba), cadmium (Cd), chromium (Cr), lead (Pb), selenium (Se), silver (Ag), and mercury (Hg). Survey results showed that the vast majority of all respondents were concerned over proximity to industry and waste facilities, as well as exposure to standing surface water. Barium was discovered in every sample and many of the zones showed alarming levels of certain metals. For example, one zone, two blocks from a public park, showed levels of arsenic at 180 (μg/L), barium at 3296 (μg/L), chromium at 363 (μg/L), lead at 1448 (μg/L), and mercury at 10 (μg/L). These findings support the hypothesis that neighborhood members are aware of the issues affecting their community and can offer researchers valuable assistance in every stage of study design and execution.

  5. Confirming the Environmental Concerns of Community Members Utilizing Participatory-Based Research in the Houston Neighborhood of Manchester

    Directory of Open Access Journals (Sweden)

    Garett Sansom

    2016-08-01

    Full Text Available In the last few decades, there has been an increase in community-based participatory research being conducted within the United States. Recent research has demonstrated that working with local community organizations, interest groups, and individuals can assist in the creation of, and sustainability in, health initiatives, adoption of emergency protocols, and potentially improve health outcomes for at-risk populations. However little research has assessed if communal concerns over environmental contaminants would be confirmed through environmental research. This cross-sectional study collected survey data and performed surface water analysis for heavy metals in a small neighborhood in Houston, TX, which is characterized by industrial sites, unimproved infrastructure, nuisance flooding, and poor air quality. Surveys were completed with 109 residents of the Manchester neighborhood. Water samples were taken from thirty zones within the neighborhood and assessed for arsenic (As, barium (Ba, cadmium (Cd, chromium (Cr, lead (Pb, selenium (Se, silver (Ag, and mercury (Hg. Survey results showed that the vast majority of all respondents were concerned over proximity to industry and waste facilities, as well as exposure to standing surface water. Barium was discovered in every sample and many of the zones showed alarming levels of certain metals. For example, one zone, two blocks from a public park, showed levels of arsenic at 180 (μg/L, barium at 3296 (μg/L, chromium at 363 (μg/L, lead at 1448 (μg/L, and mercury at 10 (μg/L. These findings support the hypothesis that neighborhood members are aware of the issues affecting their community and can offer researchers valuable assistance in every stage of study design and execution.

  6. Peer bullying in seniors' subsidised apartment communities in Saskatoon, Canada: participatory research.

    Science.gov (United States)

    Goodridge, Donna; Heal-Salahub, Jennifer; PausJenssen, Elliot; James, George; Lidington, Joan

    2017-07-01

    Given that 'home' is the major physical-spatial environment of many older adults and that home, social and neighbourhood environments are well-recognised to impact both the ability to age in place and quality of life in this population, a better understanding of the nature of social interactions within seniors' communal living environments is critical for health promotion. This paper describes a two-phase participatory research study examining peer bullying by older adults conducted in April and May, 2016. Responding to needs expressed by tenants, the objectives of this study were to identify the nature, prevalence and consequences of peer bullying for tenants of two low-income senior apartment communities. In collaboration with the local Older Adult Abuse Task Force, a screening survey on bullying was distributed to all tenants. Findings (n = 49) indicated that 39% of tenants had witnessed peer bullying and 29% had experienced bullying by peers. An adapted version of a youth bullying survey was administered in follow-up face-to-face interviews with 13 tenants. The most common forms of peer bullying were deliberate social exclusion and hurtful comments. The majority of respondents indicated that bullying was a problem for seniors and that bullies hurt other people. Outcomes of bullying included feelings of dejection and difficulties conducting everyday activities. © 2017 John Wiley & Sons Ltd.

  7. Co-engineering Participatory Water Management Processes: Theory and Insights from Australian and Bulgarian Interventions

    Directory of Open Access Journals (Sweden)

    Katherine A. Daniell

    2010-12-01

    Full Text Available Broad-scale, multi-governance level, participatory water management processes intended to aid collective decision making and learning are rarely initiated, designed, implemented, and managed by one person. These processes mostly emerge from some form of collective planning and organization activities because of the stakes, time, and budgets involved in their implementation. Despite the potential importance of these collective processes for managing complex water-related social-ecological systems, little research focusing on the project teams that design and organize participatory water management processes has ever been undertaken. We have begun to fill this gap by introducing and outlining the concept of a co-engineering process and examining how it impacts the processes and outcomes of participatory water management. We used a hybrid form of intervention research in two broad-scale, multi-governance level, participatory water management processes in Australia and Bulgaria to build insights into these co-engineering processes. We examined how divergent objectives and conflict in the project teams were negotiated, and the impacts of this co-engineering on the participatory water management processes. These investigations showed: (1 that language barriers may aid, rather than hinder, the process of stakeholder appropriation, collective learning and skills transferal related to the design and implementation of participatory water management processes; and (2 that diversity in co-engineering groups, if managed positively through collaborative work and integrative negotiations, can present opportunities and not just challenges for achieving a range of desired outcomes for participatory water management processes. A number of areas for future research on co-engineering participatory water management processes are also highlighted.

  8. Network methods to support user involvement in qualitative data analyses: an introduction to Participatory Theme Elicitation.

    Science.gov (United States)

    Best, Paul; Badham, Jennifer; Corepal, Rekesh; O'Neill, Roisin F; Tully, Mark A; Kee, Frank; Hunter, Ruth F

    2017-11-23

    While Patient and Public Involvement (PPI) is encouraged throughout the research process, engagement is typically limited to intervention design and post-analysis stages. There are few approaches to participatory data analyses within complex health interventions. Using qualitative data from a feasibility randomised controlled trial (RCT), this proof-of-concept study tests the value of a new approach to participatory data analysis called Participatory Theme Elicitation (PTE). Forty excerpts were given to eight members of a youth advisory PPI panel to sort into piles based on their perception of related thematic content. Using algorithms to detect communities in networks, excerpts were then assigned to a thematic cluster that combined the panel members' perspectives. Network analysis techniques were also used to identify key excerpts in each grouping that were then further explored qualitatively. While PTE analysis was, for the most part, consistent with the researcher-led analysis, young people also identified new emerging thematic content. PTE appears promising for encouraging user led identification of themes arising from qualitative data collected during complex interventions. Further work is required to validate and extend this method. ClinicalTrials.gov, ID: NCT02455986 . Retrospectively Registered on 21 May 2015.

  9. Finnish Parental Involvement Ethos, Health Support, Health Education Knowledge and Participation: Results from a 2-Year School Health Intervention

    Science.gov (United States)

    Sormunen, Marjorita; Tossavainen, Kerttu; Turunen, Hannele

    2013-01-01

    A 2-year, participatory action research school health study focused on developing components for home-school partnerships to support children's health learning process. Two intervention schools implemented strengthened health and collaboration-orientated activities; two control schools followed the national core curriculum without extracurricular…

  10. Showing the Unsayable: Participatory Visual Approaches and the Constitution of 'Patient Experience' in Healthcare Quality Improvement.

    Science.gov (United States)

    Papoulias, Constantina

    2018-06-01

    This article considers the strengths and potential contributions of participatory visual methods for healthcare quality improvement research. It argues that such approaches may enable us to expand our understanding of 'patient experience' and of its potential for generating new knowledge for health systems. In particular, they may open up dimensions of people's engagement with services and treatments which exceed both the declarative nature of responses to questionnaires and the narrative sequencing of self reports gathered through qualitative interviewing. I will suggest that working with such methods may necessitate a more reflexive approach to the constitution of evidence in quality improvement work. To this end, the article will first consider the emerging rationale for the use of visual participatory methods in improvement before outlining the implications of two related approaches-photo-elicitation and PhotoVoice-for the constitution of 'experience'. It will then move to a participatory model for healthcare improvement work, Experience Based Co-Design (EBCD). It will argue that EBCD exemplifies both the strengths and the limitations of adequating visual participatory approaches to quality improvement ends. The article will conclude with a critical reflection on a small photographic study, in which the author participated, and which sought to harness service user perspectives for the design of psychiatric facilities, as a way of considering the potential contribution of visual participatory methods for quality improvement.

  11. Teaching and Learning: Highlighting the Parallels between Education and Participatory Evaluation.

    Science.gov (United States)

    Vanden Berk, Eric J.; Cassata, Jennifer Coyne; Moye, Melinda J.; Yarbrough, Donald B.; Siddens, Stephanie K.

    As an evaluation team trained in educational psychology and committed to participatory evaluation and its evolution, the researchers have found the parallel between evaluator-stakeholder roles in the participatory evaluation process and educator-student roles in educational psychology theory to be important. One advantage then is that the theories…

  12. The role of computer modelling in participatory integrated assessments

    International Nuclear Information System (INIS)

    Siebenhuener, Bernd; Barth, Volker

    2005-01-01

    In a number of recent research projects, computer models have been included in participatory procedures to assess global environmental change. The intention was to support knowledge production and to help the involved non-scientists to develop a deeper understanding of the interactions between natural and social systems. This paper analyses the experiences made in three projects with the use of computer models from a participatory and a risk management perspective. Our cross-cutting analysis of the objectives, the employed project designs and moderation schemes and the observed learning processes in participatory processes with model use shows that models play a mixed role in informing participants and stimulating discussions. However, no deeper reflection on values and belief systems could be achieved. In terms of the risk management phases, computer models serve best the purposes of problem definition and option assessment within participatory integrated assessment (PIA) processes

  13. Creative and Arts-Based Research Methods in Academic Research. Lessons from a Participatory Research Project in the Netherlands

    Directory of Open Access Journals (Sweden)

    Gwenda van der Vaart

    2018-05-01

    Full Text Available This article contributes to the discussion on the value of creative and arts-based research methods to researchers interested in community resilience. Based on a participatory research project that used a mix of these methods conducted in a Dutch village, we provide more nuanced, concrete insights into their value. We elaborate on the three project stages: walking interviews, group discussions, and a creative workshop that resulted in an exhibition, and on the challenges encountered during our project. We discuss how each project stage contributed to producing multifaceted knowledge. Researchers can benefit from the discussions about the process and implications of creative and arts-based methods such as ours as, to date, there has been relatively little methodological reflection on these methods. Based on our study, we conclude that despite some challenges, creative and arts-based research methods have much to offer researchers interested in community resilience. We found they can: 1. generate deep insight by going beyond rational-cognitive ways of knowing and providing new ways of understanding people's real lived experiences and views; and 2. offer ways to "give back" and contribute to a community, potentially igniting a spark among community members to engage in further action and contribute to their community's resilience. This aligns with the, currently often articulated, aims of researchers to directly benefit those involved and to share their research findings with a broader non-academic audience.

  14. Peace corps partnered health services implementation research in global health: opportunity for impact.

    Science.gov (United States)

    Dykens, Andrew; Hedrick, Chris; Ndiaye, Youssoupha; Linn, Annē

    2014-09-01

    , the contributions of each partner are as follows: the local community and health system leadership guides the work in consideration of local priorities and context; the Peace Corps provides logistical support, community expertise, and local trust; and the academic institutions offer professional technical and public health educational and training resources and research support. The Peace Corps offers the opportunity to enhance a community-academic partnership in LMICs through community-level guidance, logistical assistance, and research support for community based participatory primary health-care services implementation research that addresses local primary healthcare priorities.

  15. Disentangling participation power and decision-making in participatory design

    CERN Document Server

    Bratteteig, Tone

    2014-01-01

    Providing a critical view on user participation in design, disentangling decision making and power in design, this book uses fieldwork material from two large participatory design projects: one experimental in the field of urban planning, the other a product development project within health care. Addressing power issues in participatory design is critical to providing a realistic view of the possibilities and limitations of participation. Design is decision-making: during a design process a huge number of decisions?taken before the designers end up with a design result - an artefact or system

  16. Developing Participatory Approaches for Use in an Action Research Project with Teachers Who Support Children with Visual Impairment in Kenya and Uganda: Reflections on the Relational Praxis between Participants and Research Institutions

    Science.gov (United States)

    Lynch, Paul; McLinden, Mike; Douglas, Graeme; McCall, Steve; Muturi, Mary; Bayo, Asher; Mwaura, Martha; Muga, John

    2012-01-01

    Participatory research is a broad term covering a range of approaches that are characterised by a focus on "action-oriented" research involving researchers and participants working in collaboration to bring about positive change. These approaches emphasise engagement with co-researchers and the development and implementation of…

  17. A room for design: Through participatory design young adults with schizophrenia become strong collaborators.

    Science.gov (United States)

    Terp, Malene; Laursen, Birgitte Schantz; Jørgensen, Rikke; Mainz, Jan; Bjørnes, Charlotte D

    2016-12-01

    Smartphone technology is being increasingly viewed as key to engaging young adults with schizophrenia in their own mental health care. In an attempt to use smartphones as an engagement tool, we conducted a participatory design process, where young adults with schizophrenia (n = 4), healthcare providers (n = 7), software designers (n = 3), graphic designer (n = 1), graphic recorder (n = 1), and team leader (n = 1) co-designed a smartphone application for use in early phase schizophrenia care. This paper reports the co-design process. Based on a variety of written data-sources, the paper describes if, and how, participatory design can help construct a physical and relational environment that enables young adults with schizophrenia to become active participants in the design of a more participatory mental health practice. Guided by Etienne Wenger's construct of Community of Practice, three major categories of characteristics and construction of a physical and relational environment supporting and inspiring participation and engagement were identified: (i) a pre-narrative about a community of practice, (ii) the room for design is a community of practice and (iii) the community of practice as a practice of special qualities. It is concluded that participatory design can support and inspire participation and engagement in the development of mental health care with young adults with schizophrenia, given that the environment in which participatory design unfolds is transparent, flexible, secure and informal. © 2016 Australian College of Mental Health Nurses Inc.

  18. "We're Trying to Take Action": Transformative Agency, Role Re-Mediation, and the Complexities of Youth Participatory Action Research

    Science.gov (United States)

    Bertrand, Melanie; Durand, E. Sybil; Gonzalez, Taucia

    2017-01-01

    This article seeks to illuminate the complexity of youth participatory action research (YPAR) through the use of two concepts: (1) transformative agency, a collective initiative to address conflicts and contradictions in activity systems, and (2) role re-mediation, the disruption of power relations. We demonstrate that these concepts, in…

  19. Sustaining Participatory Design in the organization - Infrastructuring with Participatory Design

    DEFF Research Database (Denmark)

    Bolmsten, Johan

    Modern organizations need to be able to change to seize opportunities and meet challenges, which are ever more rapidly presenting themselves. In doing so, they need to make use of the creativity and innovations of their employees. At the same time Information Technology applications today...... are likely to take the form of complex, integrated infrastructures, supporting collaboration within and across organizations. This places requirements on the development of IT infrastructures. As the work practices within an organization change, the supporting infrastructure also needs to evolve. This Ph......D thesis is about sustaining Participatory Design in the organization to enable users to influence the development of the IT infrastructure that supports their work practices. The empirical research is based on a long-term action research study, where this researcher works as an embedded researcher...

  20. Case study in designing a research fundamentals curriculum for community health workers: a university-community clinic collaboration.

    Science.gov (United States)

    Dumbauld, Jill; Kalichman, Michael; Bell, Yvonne; Dagnino, Cynthia; Taras, Howard L

    2014-01-01

    Community health workers (CHWs) are increasingly incorporated into research teams. Training them in research methodology and ethics, while relating these themes to a community's characteristics, may help to better integrate these health promotion personnel into research teams. An interactive training course on research fundamentals for CHWs was designed and implemented jointly by a community agency serving a primarily Latino, rural population and an academic health center. A focus group of community members and input from community leaders comprised a community-based participatory research model to create three 3-hour interactive training sessions. The resulting curriculum was interactive and successfully stimulated dialogue between trainees and academic researchers. By choosing course activities that elicited community-specific responses into each session's discussion, researchers learned about the community as much as the training course educated CHWs about research. The approach is readily adaptable, making it useful to other communities where CHWs are part of the health system.

  1. Participatory Communication and Sustainability Development: Case Study of Coal Mining Environment in East Kalimantan, Indonesia

    Directory of Open Access Journals (Sweden)

    Inda Fitryarini

    2018-03-01

    Full Text Available This essay tries to analyze about participatory communication, especially those currently practiced in coal mining communities in Samarinda, East Kalimantan Province, Indonesia. In addition, specific practices to facilitate participatory communication are identified and discussed. This essay is based on the author's research on environmental conflicts in coal mining areas. The conclusion of this essay is that community participatory communication in coal mining industry area is still at a pseudo participatory stage.

  2. Child and youth participatory interventions for addressing lifestyle-related childhood obesity: a systematic review.

    Science.gov (United States)

    Frerichs, L; Ataga, O; Corbie-Smith, G; Tessler Lindau, S

    2016-12-01

    A growing number of childhood obesity interventions involve children and youth in participatory roles, but these types of interventions have not been systematically reviewed. We aimed to identify child and youth participatory interventions in the peer-reviewed literature in order to characterize the approaches and examine their impact on obesity and obesity-related lifestyle behaviours. We searched PubMed/Medline, psychINFO and ERIC for quasi-experimental and randomized trials conducted from date of database initiation through May 2015 that engaged children or youth in implementing healthy eating, physical activity or weight management strategies. Eighteen studies met our eligibility criteria. Most (n = 14) trained youth to implement pre-defined strategies targeting their peers. A few (n = 4) assisted youth to plan and implement interventions that addressed environmental changes. Thirteen studies reported at least one statistically significant weight, physical activity or dietary change outcome. Participatory approaches have potential, but variation in strategies and outcomes leave questions unanswered about the mechanisms through which child and youth engagement impact childhood obesity. Future research should compare child-delivered or youth-delivered to adult-delivered health promotion interventions and more rigorously evaluate natural experiments that engage youth to implement environmental changes. With careful attention to theoretical frameworks, process and outcome measures, these studies could strengthen the effectiveness of child and youth participatory approaches. © 2016 World Obesity Federation.

  3. An Exploration of the Effect of Community Engagement in Research on Perceived Outcomes of Partnered Mental Health Services Projects*

    Science.gov (United States)

    Khodyakov, Dmitry; Stockdale, Susan; Jones, Felica; Ohito, Elizabeth; Jones, Andrea; Lizaola, Elizabeth; Mango, Joseph

    2011-01-01

    Mental health research projects address sensitive issues for vulnerable populations and are implemented in complex environments. Community-Based Participatory Research approaches are recommended for health research on vulnerable populations, but little is known about how variation in participation affects outcomes of partnered research projects. We developed a conceptual model demonstrating the impact of community engagement in research on outcomes of partnered projects. We collected data on key constructs from community and academic leaders of 21 sampled partnered research projects in two cycles of an NIMH research center. We conducted empirical analyses to test the model. Our findings suggest that community engagement in research is positively associated with perceived professional development, as well as political and community impact. PMID:22582144

  4. Participatory monitoring and evaluation approaches that influence decision-making: lessons from a maternal and newborn study in Eastern Uganda.

    Science.gov (United States)

    Kananura, Rornald Muhumuza; Ekirapa-Kiracho, Elizabeth; Paina, Ligia; Bumba, Ahmed; Mulekwa, Godfrey; Nakiganda-Busiku, Dinah; Oo, Htet Nay Lin; Kiwanuka, Suzanne Namusoke; George, Asha; Peters, David H

    2017-12-28

    The use of participatory monitoring and evaluation (M&E) approaches is important for guiding local decision-making, promoting the implementation of effective interventions and addressing emerging issues in the course of implementation. In this article, we explore how participatory M&E approaches helped to identify key design and implementation issues and how they influenced stakeholders' decision-making in eastern Uganda. The data for this paper is drawn from a retrospective reflection of various M&E approaches used in a maternal and newborn health project that was implemented in three districts in eastern Uganda. The methods included qualitative and quantitative M&E techniques such as  key informant interviews, formal surveys and supportive supervision, as well as participatory approaches, notably participatory impact pathway analysis. At the design stage, the M&E approaches were useful for identifying key local problems and feasible local solutions and informing the activities that were subsequently implemented. During the implementation phase, the M&E approaches provided evidence that informed decision-making and helped identify emerging issues, such as weak implementation by some village health teams, health facility constraints such as poor use of standard guidelines, lack of placenta disposal pits, inadequate fuel for the ambulance at some facilities, and poor care for low birth weight infants. Sharing this information with key stakeholders prompted them to take appropriate actions. For example, the sub-county leadership constructed placenta disposal pits, the district health officer provided fuel for ambulances, and health workers received refresher training and mentorship on how to care for newborns. Diverse sources of information and perspectives can help researchers and decision-makers understand and adapt evidence to contexts for more effective interventions. Supporting districts to have crosscutting, routine information generating and sharing platforms

  5. Perceptions that influence the maintenance of scientific integrity in community-based participatory research.

    Science.gov (United States)

    Kraemer Diaz, Anne E; Spears Johnson, Chaya R; Arcury, Thomas A

    2015-06-01

    Scientific integrity is necessary for strong science; yet many variables can influence scientific integrity. In traditional research, some common threats are the pressure to publish, competition for funds, and career advancement. Community-based participatory research (CBPR) provides a different context for scientific integrity with additional and unique concerns. Understanding the perceptions that promote or discourage scientific integrity in CBPR as identified by professional and community investigators is essential to promoting the value of CBPR. This analysis explores the perceptions that facilitate scientific integrity in CBPR as well as the barriers among a sample of 74 professional and community CBPR investigators from 25 CBPR projects in nine states in the southeastern United States in 2012. There were variations in perceptions associated with team member identity as professional or community investigators. Perceptions identified to promote and discourage scientific integrity in CBPR by professional and community investigators were external pressures, community participation, funding, quality control and supervision, communication, training, and character and trust. Some perceptions such as communication and training promoted scientific integrity whereas other perceptions, such as a lack of funds and lack of trust could discourage scientific integrity. These results demonstrate that one of the most important perceptions in maintaining scientific integrity in CBPR is active community participation, which enables a co-responsibility by scientists and community members to provide oversight for scientific integrity. Credible CBPR science is crucial to empower the vulnerable communities to be heard by those in positions of power and policy making. © 2015 Society for Public Health Education.

  6. Inside the "Black Box" of a Knowledge Translation Program in Applied Health Research.

    Science.gov (United States)

    Heaton, Janet; Day, Jo; Britten, Nicky

    2015-11-01

    In this article, we present the findings of a participatory realistic evaluation of a 5-year program of health care research intended to promote the translation of knowledge into routine clinical practice. The program was one of the nine pilot Collaborations for Leadership in Applied Health Research and Care funded by the English National Institute for Health Research between 2008 and 2013. Our aim was to delineate the mechanisms by which, and circumstances in which, some projects carried out under the program achieved success in knowledge translation while others were frustrated. Using qualitative methods, we examined how closer collaboration between academics and clinicians worked in four purposefully chosen case studies. In a synthesis of the findings, we produced a "black box" model of how knowledge translation was enabled by the activation of nine mechanisms. These are summarized in the form of five simple rules for promoting knowledge translation through collaborations based on principles of coproduction. © The Author(s) 2015.

  7. Developing an integrated framework of problem-based learning and coaching psychology for medical education: a participatory research.

    Science.gov (United States)

    Wang, Qing; Li, Huiping; Pang, Weiguo; Liang, Shuo; Su, Yiliang

    2016-01-05

    Medical schools have been making efforts to develop their own problem-based learning (PBL) approaches based on their educational conditions, human resources and existing curriculum structures. This study aimed to explore a new framework by integrating the essential features of PBL and coaching psychology applicable to the undergraduate medical education context. A participatory research design was employed. Four educational psychology researchers, eight undergraduate medical school students and two accredited PBL tutors participated in a four-month research programme. Data were collected through participatory observation, focus groups, semi-structured interviews, workshop documents and feedback surveys and then subjected to thematic content analysis. The triangulation of sources and member checking were used to ensure the credibility and trustworthiness of the research process. Five themes emerged from the analysis: current experience of PBL curriculum; the roles of and relationships between tutors and students; student group dynamics; development of self-directed learning; and coaching in PBL facilitation. On the basis of this empirical data, a systematic model of PBL and coaching psychology was developed. The findings highlighted that coaching psychology could be incorporated into the facilitation system in PBL. The integrated framework of PBL and coaching psychology in undergraduate medical education has the potential to promote the development of the learning goals of cultivating clinical reasoning ability, lifelong learning capacities and medical humanity. Challenges, benefits and future directions for implementing the framework are discussed in this paper.

  8. Challenges in participatory primary stress management interventions in knowledge intensive SMEs

    DEFF Research Database (Denmark)

    Gish, Liv; Ipsen, Christine

    2013-01-01

    relevant change processes. This paper presents the outline of our research and development project on participatory primary stress management interventions in knowledge intensive SMEs, as well as the preliminary results and related implications. The research and development project is conducted in order...... to develop an operational model which SMEs can use when they want to initiate participatory primary stress management interventions in their company. The development project builds on a process model for participatory primary interventions in larger knowledge intensive companies and the premises behind......While knowledge intensive SMEs have recognized the need for change with respect to productivity and wellbeing, and to some extend have access to tools and methods for enabling this, they still lack process competences and are uncertain about how to approach primary stress interventions and initiate...

  9. Farmers Participatory Research in the Evaluation of Maize Crop Residues for Improved Dairy Cattle Production in Eastern Kenya

    International Nuclear Information System (INIS)

    Kiruiro, E.M.; Kariuki, I.W.; Kang'ara, J.; Ouma, O.

    1999-01-01

    Informal and formal surveys, and participatory rural appraisal conducted within the coffee land-use system of Embu District in Eastern Kenya identified feed shortage as a major constraint to increased dairy production on small holder farms. To address this constraint, a two-year (1996-1998) on-farm research project involving 20 farms in Manyatta division, Embu District was initiated with broad objectives of developing components technologies that would use maize crop residues. This was due to the recognition of the fact that the greatest potential for improving field availability would be in the exploitation of crop residues, especially those derived from maize, the main staple crop in the region. Based on these reality appropriate technologies that would offer viable offers for the use of crop residues were identified and discussed during workshops and meetings with farmers. Component technologies considered included drying of maize leaves after defoliation and post-harvest storage methods for dry maize stover. this paper discussed the results of the participatory research in context of farmers' involvement in the technology development, testing, evaluation and promotion. The study demonstrated that involving farmers in all stages of the research process, enhanced their interest and participation in the testing and subsequent adoption of appropriate technologies

  10. Tackling fuel poverty through facilitating energy tariff switching: a participatory action research study in vulnerable groups.

    Science.gov (United States)

    Lorenc, A; Pedro, L; Badesha, B; Dize, C; Fernow, I; Dias, L

    2013-10-01

    A fifth of UK households live in fuel poverty, with significant health risks. Recent government strategy integrates public health with local government. This study examined barriers to switching energy tariffs and the impact of an energy tariff switching 'intervention' on vulnerable peoples' likelihood to, success in, switching tariffs. Participatory Action Research (PAR), conducted in West London. Community researchers from three voluntary/community organisations (VCOs) collaborated in recruitment, study design, data collection and analysis. VCOs recruited 151 participants from existing service users in three groups: Black and Minority Ethnic (BME) communities, older people (>75 yrs) and families with young children. Researchers conducted two semi-structured interviews with each participant, a week apart. The first interview asked about demographics, current energy supplier, financial situation, previous experience of tariff-switching and barriers to switching. Researchers then provided the 'intervention' - advice on tariff-switching, printed materials, access to websites. The second interview explored usefulness of the 'intervention', other information used, remaining barriers and information needs. Researchers kept case notes and a reflective log. Data was analysed thematically and collaboratively between the research coordinator and researchers. Quantitative data was analysed using SPSS, with descriptive statistics and Chi-squared tests. A total of 151 people were interviewed: 47 older people over 75 years, 51 families with young children, 51 BME (two were missing demographics). The majority were not White British or UK-born. Average household weekly income was £230. Around half described 'difficult' financial situations, 94% were receiving state benefits and 62% were in debt. Less than a third had tried to find a better energy deal; knowledge was the main barrier. After the intervention 19 people tried to switch, 13 did. Young families were most likely to

  11. The diffusion of youth-led participatory research in urban schools: the role of the prevention support system in implementation and sustainability.

    Science.gov (United States)

    Ozer, Emily J; Cantor, Jeremy P; Cruz, Gary W; Fox, Brian; Hubbard, Elizabeth; Moret, Lauren

    2008-06-01

    This article discusses the dissemination of a process of youth-led participatory research in urban secondary schools within the Interactive Systems Framework for Dissemination and Implementation (ISF) developed in collaboration with the CDC and its university partners (Wandersman et al. American Journal of Community Psychology, 41(3-4) 2008). The focus here is on the development of the Prevention Support System with respect to general and innovation-specific capacity building. The specific process under study involves youth-led needs assessment and research to inform the planning of prevention programs and policies to address students' health and developmental needs. The article first briefly describes the youth-led research process, its potential benefits, and a case example in two urban secondary schools. It then describes challenges and responses in providing support for the diffusion of this model in 6 secondary schools. The settings are urban public schools with a majority of students of color from diverse ethnic groups: Asian-American, Latino, and African-American. This project constitutes a collaborative partnership with a university school of public health and community-based organizations (CBOs) to build capacity for long-term, sustainable implementation of this innovative process within the local school system. The perspectives of the university-based researcher and the CBO partners on the development and effectiveness of the Prevention Support System are presented.

  12. A virtue ethics guide to best practices for community-based participatory research.

    Science.gov (United States)

    Schaffer, Marjorie A

    2009-01-01

    Rule ethics, or principled thinking, is important in the analysis of risks and benefits of research and informed consent, but is not completely adequate for guiding ethical responses to communities as research participants and collaborators. Virtue ethics theory can be used to guide actions in relationships, which are foundational to the implementation of community-based participatory research (CBPR). Virtues are strengths of character that contribute to a life of flourishing or well-being for individuals and communities. This article provides an overview of virtue ethics theory, identifies common ethical problems in CBPR, and discusses how professional virtues can be used to guide ethical research practice. The virtues of compassion, courage, honesty, humility, justice, and practical reasoning are defined and applied to ethical practice in the development, implementation, and dissemination of CBPR. Best practices for CBPR that consider the well-being of communities are identified. The virtues of compassion and humility foster inclusiveness and integration of community perspectives in research collaboration. Courage requires researchers to step out of the research safety-net to listen to community member voices and wisdom and share power in research decisions. Honesty requires researchers to communicate realistic expectations for research outcomes, share all findings with the community, and consider community perspectives in research dissemination. Systematic involvement of the community in all steps of the research process represents the virtue of practical reasoning. From a justice perspective, CBPR aims to restore communities rather than take from them.

  13. Effect of a participatory organizational-level occupational health intervention on job satisfaction, exhaustion and sleep disturbances

    DEFF Research Database (Denmark)

    Framke, Elisabeth; Sørensen, Ole Henning; Pedersen, Jacob

    2016-01-01

    -group analyses showed that there was no statistically significant difference between the two groups for changes in any of the outcome variables, neither in the unadjusted or in the adjusted analyses. Conclusions: We found no evidence that participating in an organizational-level occupational health intervention......Background: We examined whether the implementation of a participatory organizational-level intervention aiming to improve the working environment with a focus on the core task at work, increased job satisfaction and reduced exhaustion and sleep disturbances among pre-school employees. Methods...

  14. Effect of a participatory organizational-level occupational health intervention on short-term sickness absence

    DEFF Research Database (Denmark)

    Framke, Elisabeth; Sørensen, Ole Henning; Pedersen, Jacob

    2016-01-01

    with a crude RR of 0.83 (95% CI 0.69–0.99) and an adjusted RR of 0.84 (95% CI 0.69–1.01). Conclusions: Pre-school employees participating in an organizational-level occupational health intervention focusing on the core task at work had a lower incidence of short-term sickness absence during a 29-month follow......Objectives: The aim of this study was to examine whether employees in pre-schools that implemented a participatory organizational-level intervention focusing on the core task at work had a lower incidence of short-term sickness absence compared to employees in the control group. Methods...

  15. Broadening Participation in the Geosciences through Participatory Research

    Science.gov (United States)

    Pandya, R. E.; Hodgson, A.; Wagner, R.; Bennett, B.

    2009-12-01

    In spite of many efforts, the geosciences remain less diverse than the overall population of the United States and even other sciences. This lack of diversity threatens the quality of the science, the long-term viability of our workforce, and the ability to leverage scientific insight in service of societal needs. Drawing on new research into diversity specific to geosciences, this talk will explore underlying causes for the lack of diversity in the atmospheric and related sciences. Causes include the few geoscience majors available at institutions with large minority enrollment; a historic association of the geosciences with extractive industries which are negatively perceived by many minority communities, and the perception that science offers less opportunity for service than other fields. This presentation suggests a new approach - community-based participatory research (CBPR). In CBPR, which was first applied in the field of rural development and has been used for many years in biomedical fields, scientists and community leaders work together to design a research agenda that simultaneously advances basic understanding and addresses community priorities. Good CBPR integrates research, education and capacity-building. A CBRP approach to geoscience can address the perceived lack of relevance and may start to ameliorate a history of negative experiences of geosciences. Since CBPR works best when it is community-initiated, it can provide an ideal place for Minority-Serving Institutions to launch their own locally-relevant programs in the geosciences. The presentation will conclude by describing three new examples of CBPR. The first is NCAR’s partnerships to explore climate change and its impact on Tribal lands. The second approach a Denver-area listening conference that will identify and articulate climate-change related priorities in the rapidly-growing Denver-area Latino community. Finally, we will describe a Google-funded project that brings together

  16. People, Land and Water: Participatory Development Communication ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    2006-01-01

    Jan 1, 2006 ... ... and offers insights and lessons from research and experience in the field. ... 2000), and Involving the Community: A Guide to Participatory Development ... IDRC is now accepting applications for this year's Trees and People: ...

  17. Web-based Survey Data Collection With Peer Support and Advocacy Organizations: Implications of Participatory Methods.

    Science.gov (United States)

    Ostrow, Laysha; Penney, Darby; Stuart, Elizabeth; Leaf, Phillip J

    2017-01-01

    The 2012 National Survey of Peer-Run Organizations is one of the first to survey a nationally representative sample of mental health peer-run organizations, nonprofit venues for support and advocacy which are defined by people with psychiatric histories being in positions of authority and control. This paper describes data collection methods and demonstrates how participatory strategies to involve people with psychiatric histories intersected with Internet research to achieve study aims. People with psychiatric histories were involved in designing and implementing a web-based survey to collect data on peer-run organizations' operations and views on national policy. Participatory approaches were used throughout design, data collection analysis, and dissemination. The extensive involvement of people with psychiatric histories in project design and implementation were important strategies that contributed to this study's success.

  18. The Church as a Bridge to Deliver Health Resources Via Telehealth

    Science.gov (United States)

    2017-10-25

    Obesity; Diet, Food, and Nutrition; Church; Healthcare Disparities; Minority Health; Mobile Health; Telehealth; Community-based Participatory Research; Primary Health Care; Weight Loss Programs; Health Behavior

  19. Effects of a worker participatory program for improving work environments on job stressors and mental health among workers: a controlled trial.

    Science.gov (United States)

    Kobayashi, Yuka; Kaneyoshi, Akiko; Yokota, Atsuko; Kawakami, Norito

    2008-01-01

    The Mental Health Action Checklist for a Better Workplace Environment (MHACL) is a tool for a worker participatory approach to improve work environments for worker mental health. The present study investigated the effects of an organizational intervention using the MHACL on reducing job stressors and the psychological distress of workers of a manufacturing enterprise in Japan with a controlled study design. Nine of 45 departments participated in a work environment improvement program, including planning workshops, implementation and monitoring, between July and December 2005 (intervention group, n=321). The remaining 36 departments served as the control group (n=750). Outcomes (job stressors, worksite support, psychological distress, etc.), measured using the Brief Job Stress Questionnaire, as well as sick leave days taken from the company record, were recorded before and six months after the program for both groups. Among women, skill underutilization, supervisor and coworker support, psychological distress, and job satisfaction changed more favorably in the intervention group than in the control group (pparticipation in the planning workshops and among departments with a 50% or higher rate of implemented vs. planned actions. A worker participatory organizational intervention using the MHACL seems effective for promoting mental health among Japanese white-collar women.

  20. Public and patient involvement in quantitative health research: A statistical perspective.

    Science.gov (United States)

    Hannigan, Ailish

    2018-06-19

    The majority of studies included in recent reviews of impact for public and patient involvement (PPI) in health research had a qualitative design. PPI in solely quantitative designs is underexplored, particularly its impact on statistical analysis. Statisticians in practice have a long history of working in both consultative (indirect) and collaborative (direct) roles in health research, yet their perspective on PPI in quantitative health research has never been explicitly examined. To explore the potential and challenges of PPI from a statistical perspective at distinct stages of quantitative research, that is sampling, measurement and statistical analysis, distinguishing between indirect and direct PPI. Statistical analysis is underpinned by having a representative sample, and a collaborative or direct approach to PPI may help achieve that by supporting access to and increasing participation of under-represented groups in the population. Acknowledging and valuing the role of lay knowledge of the context in statistical analysis and in deciding what variables to measure may support collective learning and advance scientific understanding, as evidenced by the use of participatory modelling in other disciplines. A recurring issue for quantitative researchers, which reflects quantitative sampling methods, is the selection and required number of PPI contributors, and this requires further methodological development. Direct approaches to PPI in quantitative health research may potentially increase its impact, but the facilitation and partnership skills required may require further training for all stakeholders, including statisticians. © 2018 The Authors Health Expectations published by John Wiley & Sons Ltd.

  1. Pursuing Authenticity From Process to Outcome in a Community-Based Participatory Research Study of Intimate Partner Violence and HIV Vulnerability in North Karnataka, India.

    Science.gov (United States)

    Blanchard, Andrea Katryn; Sangha, Chaitanya Aids Tadegattuva Mahila; Nair, Sapna G; Thalinja, Raghavendra; Srikantamurthy, H S; Ramanaik, Satyanaryana; Javalkar, Prakash; Pillai, Priya; Isac, Shajy; Collumbien, Martine; Heise, Lori; Bhattacharjee, Parinita; Bruce, Sharon Gail

    2017-01-01

    Community-based participatory research has been seen to hold great promise by researchers aiming to bridge research and action in global health programs and practice. However, there is still much debate around whether achieving authenticity in terms of in-depth collaboration between community and academic partners is possible while pursuing academic expectations for quality. This article describes the community-based methodology for a qualitative study to explore intimate partner violence and HIV/AIDS among women in sex work, or female sex workers, and their male partners in Karnataka, South India. Developed through collaborative processes, the study methodology followed an interpretive approach to qualitative inquiry, with three key components including long-term partnerships, knowledge exchange, and orientation toward action. We then discuss lessons learned on how to pursue authenticity in terms of truly collaborative processes with inherent value that also contribute to, rather than hinder, the instrumental goal of enhancing the quality and relevance of the research outcomes. © The Author(s) 2016.

  2. A Community-Based, Technology-Supported Health Service for Detecting and Preventing Frailty among Older Adults: A Participatory Design Development Process.

    Science.gov (United States)

    van Velsen, Lex; Illario, Maddalena; Jansen-Kosterink, Stephanie; Crola, Catherine; Di Somma, Carolina; Colao, Annamaria; Vollenbroek-Hutten, Miriam

    2015-01-01

    Frailty is a multifaceted condition that affects many older adults and marks decline on areas such as cognition, physical condition, and nutritional status. Frail individuals are at increased risk for the development of disability, dementia, and falls. There are hardly any health services that enable the identification of prefrail individuals and that focus on prevention of further functional decline. In this paper, we discuss the development of a community-based, technology-supported health service for detecting prefrailty and preventing frailty and further functional decline via participatory design with a wide range of stakeholders. The result is an innovative service model in which an online platform supports the integration of traditional services with novel, Information Communication Technology supported tools. This service is capable of supporting the different phases of screening and offers training services, by also integrating them with community-based services. The service model can be used as a basis for developing similar services within a wide range of healthcare systems. We present the service model, the general functioning of the technology platform, and the different ways in which screening for and prevention of frailty has been localized. Finally, we reflect on the added value of participatory design for creating such health services.

  3. Development of a community-based participatory colorectal cancer screening intervention to address disparities, Arkansas, 2008-2009.

    Science.gov (United States)

    Yeary, Karen; Flowers, Eric; Ford, Gemessia; Burroughs, Desiree; Burton, Jackie; Woods, Delores; Stewart, Chara; Mehta, Paulette; Greene, Paul; Henry-Tillman, Ronda

    2011-03-01

    The death rate from colorectal cancer is high and affects poor and medically underserved populations disproportionately. In the United States, health disparities are particularly acute in the Lower Mississippi River Delta region. Because many in the region have limited access to basic health care resources, they are not screened for cancer, even though screening is one of the most effective strategies to prevent colorectal cancer. Community-based participatory research is a promising approach to prevent colorectal cancer in this population. The Empowering Communities for Life program was implemented in 2 underserved counties in the Arkansas Lower Mississippi River Delta. The program arose from a 9-year partnership between the University of Arkansas for Medical Sciences and 9 cancer councils across Arkansas. Empowering Communities for Life is a community-based participatory intervention designed to increase colorectal cancer screening in rural, underserved communities through fecal occult blood testing. Community and academic partners collaborated to develop research infrastructure, intervention materials and methods, and the assessment instrument. Project outcomes were strengthened community-academic partnerships, certification of community partners in conducting human subjects research, development of a randomized controlled design to test the intervention's efficacy, an interactive PowerPoint presentation, an informational pamphlet, the certification of 6 lay health advisors and 22 role models to provide the intervention, and an assessment tool using an audience response system. Lessons learned in working collaboratively with diverse groups include the importance of meeting face to face and listening.

  4. On the line: worker democracy and the struggle over occupational health and safety.

    Science.gov (United States)

    Granzow, Kara; Theberge, Nancy

    2009-01-01

    In this article we present a qualitative analysis of worker involvement in a participatory project to improve occupational health and safety at a Canadian manufacturing site. Based on interviews with workers in the plant, we consider the manner and degree to which workers experienced meaningful participation in the intervention process and some of the main barriers to worker participation. Findings emphasize the importance of the social and political context in conditioning the dynamics of joint management labor ventures specifically in relation to health initiatives. Interviews revealed few instances in which workers felt included in the participatory initiative; most often they felt marginalized. In the absence of structural change in the plant, workers described the health initiative as seriously limited in its ability to render meaningful worker participation. These results extend beyond this analysis of a participatory workplace health initiative, offering insights into the dynamics of institutional participatory process, and into participatory research practice generally.

  5. Evaluation in participatory design

    DEFF Research Database (Denmark)

    Bossen, Claus; Dindler, Christian; Iversen, Ole Sejer

    2016-01-01

    his paper focuses on evaluation in Participatory Design (PD), and especially upon how the central aims of mutual learning, empowerment, democracy and workplace quality have been assessed. We surveyed all Participatory Design Conference papers (1990-2014) and papers from special journal issues on PD...

  6. participatory evaluation: the case of the natal primary science project ...

    African Journals Online (AJOL)

    IS crucial in participatory evaluation IS the realization that such a .... action research models in which the researcher is a participant ... They do, however, neglect the research ... example, about how children learn science) and by the process of ...

  7. Echoes of Bedford: a 20-year social psychology memoir on participatory action research hatched behind bars.

    Science.gov (United States)

    Fine, Michelle

    2013-11-01

    Responding to Martin Luther King Jr.'s 1968 address at the American Psychological Association calling for a psychology that would educate Whites about racial injustice, this article challenges the widening epistemological gap between those who suffer from inequality and those who conduct social policy research on inequality. In this 20-year memoir on the echoes of a single piece of participatory policy research, Changing Minds: The Impact of College in a Maximum-Security Prison (Fine et al., 2001), readers are invited to explore how deep critical participation by a collaborative team of university and prisoner researchers has facilitated theoretical and methodological complexity, enhanced contextual and construct validity, thickened commitments to ethics and action, and fueled the political sustainability and generalizability of the findings over time and space.

  8. Experiences with Farmer Participatory Cowpea Improvement and Seed Production

    International Nuclear Information System (INIS)

    Singh, B. B.

    2000-10-01

    Farmer participatory research is not only a significant concept today but it has become an essential approach to certain aspects of contemporary agricultural research. The CGIAR has already launched a system wide program on participatory research to assess the effectiveness of this approach in plant breeding, natural resources management and gender analysis. The need for participatory research arose when some of the superior technologies identified based on the tests at experiment stations failed to gain acceptance/popularity with resource poor farmers. In most cases, there was nothing wrong with the technologies but farmers did not have access to the recommended inputs and without inputs, the new technologies were poorer, equal to or marginally better than what farmers were using. The apparent lacuna was the lack of testing of new technologies in divers conditions including marginal environments without inputs to ensure superior performance under all conditions. Since all possible test conditions cannot be created at the experiment station, it is now generally agreed that farmer participation at strategic stages may be helpful in developing improved technologies intended for resource poor conditions and traditional cropping systems. The farmer participation ensures use of indigenous knowledge, farmer's perception about the acceptable plant types, seed types and use patterns. It also permits testing of selected materials in diverse conditions and farmer to farmer diffusion of improved technologies

  9. Elucidating the power in empowerment and the participation in participatory action research: a story about research team and elementary school change.

    Science.gov (United States)

    Dworski-Riggs, Deanne; Langhout, Regina Day

    2010-06-01

    Community psychologists are increasingly using Participatory Action Research (PAR) as a way to promote social justice by creating conditions that foster empowerment. Yet, little attention has been paid to the differences between the power structure that PAR advocates and the local community power structures. This paper seeks to evaluate the level of participation in a PAR project for multiple stakeholder groups, determine how PAR was adjusted to better fit community norms, and whether our research team was able to facilitate the emergence of PAR by adopting an approach that was relevant to the existing power relations. We conclude that power differences should not be seen as roadblocks to participation, but rather as moments of opportunity for the researchers to refine their methods and for the community and the community psychologist to challenge existing power structures.

  10. Developing a Health Information Technology Systems Matrix: A Qualitative Participatory Approach.

    Science.gov (United States)

    Haun, Jolie N; Chavez, Margeaux; Nazi, Kim M; Antinori, Nicole

    2016-10-06

    The US Department of Veterans Affairs (VA) has developed various health information technology (HIT) resources to provide accessible veteran-centered health care. Currently, the VA is undergoing a major reorganization of VA HIT to develop a fully integrated system to meet consumer needs. Although extensive system documentation exists for various VA HIT systems, a more centralized and integrated perspective with clear documentation is needed in order to support effective analysis, strategy, planning, and use. Such a tool would enable a novel view of what is currently available and support identifying and effectively capturing the consumer's vision for the future. The objective of this study was to develop the VA HIT Systems Matrix, a novel tool designed to describe the existing VA HIT system and identify consumers' vision for the future of an integrated VA HIT system. This study utilized an expert panel and veteran informant focus groups with self-administered surveys. The study employed participatory research methods to define the current system and understand how stakeholders and veterans envision the future of VA HIT and interface design (eg, look, feel, and function). Directed content analysis was used to analyze focus group data. The HIT Systems Matrix was developed with input from 47 veterans, an informal caregiver, and an expert panel to provide a descriptive inventory of existing and emerging VA HIT in four worksheets: (1) access and function, (2) benefits and barriers, (3) system preferences, and (4) tasks. Within each worksheet is a two-axis inventory. The VA's existing and emerging HIT platforms (eg, My HealtheVet, Mobile Health, VetLink Kiosks, Telehealth), My HealtheVet features (eg, Blue Button, secure messaging, appointment reminders, prescription refill, vet library, spotlight, vitals tracker), and non-VA platforms (eg, phone/mobile phone, texting, non-VA mobile apps, non-VA mobile electronic devices, non-VA websites) are organized by row. Columns

  11. Developing a Health Information Technology Systems Matrix: A Qualitative Participatory Approach

    Science.gov (United States)

    Chavez, Margeaux; Nazi, Kim M; Antinori, Nicole

    2016-01-01

    Background The US Department of Veterans Affairs (VA) has developed various health information technology (HIT) resources to provide accessible veteran-centered health care. Currently, the VA is undergoing a major reorganization of VA HIT to develop a fully integrated system to meet consumer needs. Although extensive system documentation exists for various VA HIT systems, a more centralized and integrated perspective with clear documentation is needed in order to support effective analysis, strategy, planning, and use. Such a tool would enable a novel view of what is currently available and support identifying and effectively capturing the consumer’s vision for the future. Objective The objective of this study was to develop the VA HIT Systems Matrix, a novel tool designed to describe the existing VA HIT system and identify consumers’ vision for the future of an integrated VA HIT system. Methods This study utilized an expert panel and veteran informant focus groups with self-administered surveys. The study employed participatory research methods to define the current system and understand how stakeholders and veterans envision the future of VA HIT and interface design (eg, look, feel, and function). Directed content analysis was used to analyze focus group data. Results The HIT Systems Matrix was developed with input from 47 veterans, an informal caregiver, and an expert panel to provide a descriptive inventory of existing and emerging VA HIT in four worksheets: (1) access and function, (2) benefits and barriers, (3) system preferences, and (4) tasks. Within each worksheet is a two-axis inventory. The VA’s existing and emerging HIT platforms (eg, My HealtheVet, Mobile Health, VetLink Kiosks, Telehealth), My HealtheVet features (eg, Blue Button, secure messaging, appointment reminders, prescription refill, vet library, spotlight, vitals tracker), and non-VA platforms (eg, phone/mobile phone, texting, non-VA mobile apps, non-VA mobile electronic devices, non

  12. Participatory Development and Reconstruction: a literature review

    NARCIS (Netherlands)

    Kyamusugulwa, P.M.

    2013-01-01

    In the past decade researchers and development experts have been preoccupied by participatory development and reconstruction. Despite criticisms of its potential, it has been at the centre of development practices. This review of both published and unpublished literature aims to assess the

  13. Facilitating participatory multilevel decision-making by using interactive mental maps

    Directory of Open Access Journals (Sweden)

    Constanze Pfeiffer

    2008-11-01

    Full Text Available Participation of citizens in political, economic or social decisions is increasingly recognized as a precondition to foster sustainable development processes. Since spatial information is often important during planning and decisionmaking, participatory mapping gains in popularity. However, little attention has been paid to the fact that information must be presented in a useful way to reach city planners and policy makers. Above all, the importance of visualisation tools to support collaboration, analytical reasoning, problem solving and decision-making in analysing and planning processes has been underestimated. In this paper, we describe how an interactive mental map tool has been developed in a highly interdisciplinary disaster management project in Chennai, India. We moved from a hand drawn mental maps approach to an interactive mental map tool. This was achieved by merging socio-economic and geospatial data on infrastructure, local perceptions, coping and adaptation strategies with remote sensing data and modern technology of map making. This newly developed interactive mapping tool allowed for insights into different locally-constructed realities and facilitated the communication of results to the wider public and respective policy makers. It proved to be useful in visualising information and promoting participatory decision-making processes. We argue that the tool bears potential also for health research projects. The interactive mental map can be used to spatially and temporally assess key health themes such as availability of, and accessibility to, existing health care services, breeding sites of disease vectors, collection and storage of water, waste disposal, location of public toilets or defecation sites.

  14. Perspectives on past and present waste disposal practices: a community-based participatory research project in three Saskatchewan first nations communities.

    Science.gov (United States)

    Zagozewski, Rebecca; Judd-Henrey, Ian; Nilson, Suzie; Bharadwaj, Lalita

    2011-04-28

    The impact of current and historical waste disposal practices on the environment and human health of Indigenous people in First Nations communities has yet to be adequately addressed. Solid waste disposal has been identified as a major environmental threat to First Nations Communities. A community-based participatory research project (CBPR) was initiated by the Saskatoon Tribal Council Health and Family Services Incorporated to investigate concerns related to waste disposal in three Saskatchewan First Nations Communities. Utilizing a qualitative approach, we aimed to gain an understanding of past and present waste disposal practices and to identify any human and environmental health concerns related to these practices. One to one interviews and sharing circles were conducted with Elders. Elders were asked to share their perspectives on past and present waste disposal practices and to comment on the possible impacts these practices may have on the environment and community health. Historically waste disposal practices were similar among communities. The homeowner generated small volumes of waste, was exclusively responsible for disposal and utilized a backyard pit. Overtime waste disposal evolved to weekly pick-up of un-segregated garbage with waste disposal and open trash burning in a community dump site. Dump site locations and open trash burning were identified as significant health issues related to waste disposal practices in these communities. This research raises issues of inequity in the management of waste in First Nations Communities. It highlights the need for long-term sustainable funding to support community-based waste disposal and management strategies and the development of First Nations centered and delivered educational programs to encourage the adoption and implementation of waste reduction, reutilization and recycling activities in these communities.

  15. Body-Map Storytelling as a Health Research Methodology: Blurred Lines Creating Clear Pictures

    Directory of Open Access Journals (Sweden)

    Denise Gastaldo

    2018-03-01

    Full Text Available In this article we review the literature on body-mapping (BM as an approach to health research in order to systematize recent advancements and to contribute to its development. We conducted a critical narrative synthesis of the literature published until September 2016 guided by two questions: 1. How has BM been utilized in health research? 2. How does BM advance a decolonization agenda? Twenty-seven studies in English, Spanish, and Portuguese were analyzed. Most of them were published between 2011 and 2016 and were conducted in South Africa, Canada, Australia, Brazil, Chile, and USA. They narrate stories of marginalized groups and commonly focus on the social determinants of health. Data generation, analysis, and knowledge mobilization strategies differ considerably. Recent developments show that body-mapping is a visual, narrative, and participatory methodology that has several names and is used unevenly by health researchers. Despite its diversity, core methodological elements reveal that participants are considered knowledgeable, reflexive individuals who can better articulate their complex life journeys when painting and drawing their bodies and social circumstances. The decolonization of health research occurs when these unlikely protagonists tell their stories producing counter-hegemonic discourses to exclusionary capitalist, patriarchal and colonialist rationalities. We call this methodology body-map storytelling.

  16. Participatory Design of Multi-Use Platforms at Sea

    Directory of Open Access Journals (Sweden)

    Sander van den Burg

    2016-01-01

    Full Text Available European oceans are subject to rapid development. New activities such as aquaculture and ocean energy have gained importance. This triggers interest in “multi-use platforms at sea” (MUPS, i.e., areas at sea in which different activities are combined. MUPS are complex features with regards to technology, governance, and financial, socioeconomic, and environmental aspects. To identify realistic and sustainable solutions and designs for MUPS, the MERMAID project applied a participatory design process (PDP involving a range of stakeholders representing companies, authorities, researchers, and NGOs. This paper evaluates if and how the participatory design process contributed to the design of multi-use platforms. It is based on interviews with the managers of the case study sites and a questionnaire administered to all stakeholders participating in the PDP workshops. Analyzing the four case studies, we conclude that the participatory design process has had a valuable contribution to the development of the four different designs of MUPS, even though the preconditions for carrying out a participatory design process differed between sites. In all four cases, the process has been beneficial in generating new and shared knowledge. It brought new design issues to the table and increased knowledge and understanding among the different stakeholders.

  17. Participatory flood vulnerability assessment: a multi-criteria approach

    Science.gov (United States)

    Madruga de Brito, Mariana; Evers, Mariele; Delos Santos Almoradie, Adrian

    2018-01-01

    This paper presents a participatory multi-criteria decision-making (MCDM) approach for flood vulnerability assessment while considering the relationships between vulnerability criteria. The applicability of the proposed framework is demonstrated in the municipalities of Lajeado and Estrela, Brazil. The model was co-constructed by 101 experts from governmental organizations, universities, research institutes, NGOs, and private companies. Participatory methods such as the Delphi survey, focus groups, and workshops were applied. A participatory problem structuration, in which the modellers work closely with end users, was used to establish the structure of the vulnerability index. The preferences of each participant regarding the criteria importance were spatially modelled through the analytical hierarchy process (AHP) and analytical network process (ANP) multi-criteria methods. Experts were also involved at the end of the modelling exercise for validation. The final product is a set of individual and group flood vulnerability maps. Both AHP and ANP proved to be effective for flood vulnerability assessment; however, ANP is preferred as it considers the dependences among criteria. The participatory approach enabled experts to learn from each other and acknowledge different perspectives towards social learning. The findings highlight that to enhance the credibility and deployment of model results, multiple viewpoints should be integrated without forcing consensus.

  18. Youths as partners in a community participatory project for substance use prevention.

    Science.gov (United States)

    Kulbok, Pamela A; Meszaros, Peggy S; Bond, Donna C; Thatcher, Esther; Park, Eunhee; Kimbrell, Monica; Smith-Gregory, Tracey

    2015-01-01

    This community-based participatory research project aimed to develop strategies to prevent youth substance use in a rural county. This article (1) describes the project phases, (2) examines unique contributions and considerations of youth involvement, and (3) explores the youths' perspective. Twelve youths, aged 16 to 18 years, joined parents, community leaders, and research specialists on the community-based participatory research team. The youths were integrally involved in all phases including the community assessment, community leader interviews, selection of a substance use prevention program, and program implementation. Youths reported sustained enthusiasm, experiences of authentic leadership, development of research skills, and greater awareness of their community.

  19. Evaluating Housing Problems through Participatory Rural Appraisal ...

    African Journals Online (AJOL)

    Nekky Umera

    Whether in research, development or policy analysis, in social, forestry, irrigation ... Action, Participatory Rural Appraisal involves interaction between the planners and the ..... Park, Obasanjo Layout, the Kogi People Consumer Shops as well as the confluence .... The institutional arrangements under which a person gains ...

  20. Participatory design in the project of virtual learning environment of histology

    OpenAIRE

    Santa-Rosa, José Guilherme da Silva

    2012-01-01

    This present article describes a research on the development, under the approach of participatory design, a virtual teaching-learning of Histology in which students and teachers participated actively in all stages of development of the educational environment. We postulates that the development of virtual learning environment of Histology, through the Participatory Design approach, contributes to greater acceptance and use by students and that the adoption of virtual environment for teaching ...

  1. Participation in health impact assessment: objectives, methods and core values.

    Science.gov (United States)

    Wright, John; Parry, Jayne; Mathers, Jonathan

    2005-01-01

    Health impact assessment (HIA) is a multidisciplinary aid to decision-making that assesses the impact of policy on public health and on health inequalities. Its purpose is to assist decision-makers to maximize health gains and to reduce inequalities. The 1999 Gothenburg Consensus Paper (GCP) provides researchers with a rationale for establishing community participation as a core value of HIA. According to the GCP, participation in HIA empowers people within the decision-making process and redresses the democratic deficit between government and society. Participation in HIA generates a sense that health and decision-making is community-owned, and the personal experiences of citizens become integral to the formulation of policy. However, the participatory and empowering dimensions of HIA may prove difficult to operationalize. In this review of the participation strategies adopted in key applications of HIA in the United Kingdom, we found that HIA's aim of influencing decision-making creates tension between its participatory and knowledge-gathering dimensions. Accordingly, researchers have decreased the participatory dimension of HIA by reducing the importance attached to the community's experience of empowerment, ownership and democracy, while enlarging its knowledge-gathering dimension by giving pre-eminence to "expert" and "research-generated" evidence. Recent applications of HIA offer a serviceable rationale for participation as a means of information gathering and it is no longer tenable to uphold HIA as a means of empowering communities and advancing the aims of participatory democracy. PMID:15682250

  2. Using Interdisciplinary and Active Research to Encourage Higher Resolution Research and Prototyping in Design

    Directory of Open Access Journals (Sweden)

    Adream Blair-Early

    2014-10-01

    Full Text Available University art and design programs are branching out and creating interdisciplinary programs and research centers that connect design students and faculty across various disciplines such as business, engineering, architecture, information studies, health sciences and education. A human-centered, problem-based approach to design research looks to position industry and academic leaders to work alongside students, community leaders, artists and non-profits to develop creative and innovative solutions to the challenges facing contemporary society. But product design benefits even more from practices that engage users throughout the entire design process, often called participatory design. Participatory design process utilizes user feedback throughout the design process to spur innovation and improve design quality. It is possible in the classroom to engage in participatory design and participatory prototyping through the use of inexpensive 3D printers and laser cutters as well as traditional hand tools, requiring only mastery of a few simple techniques and technology readily available on laptop computers. The class research being presented was conceived as part of a new interdisciplinary classroom research space call the Digital Craft Research Lab (DCRL housed within the department of Art and Design. Courses taught within the DCRL offer students, researchers and faculty continual access to both low resolution and high-resolution prototyping machinery and materials. This paper looks at the role of action and participatory research in a design course that created printed hand innovations in collaboration with a nine-year-old female user. Students were asked to work on modeling new designs as well as capturing the progress in a final open source book and models. This paper asks the question can the use of classroom collaboration, action research and work spaces encourage creativity, innovation, and critical thinking in student and professional

  3. Genuine participation in participant-centred research initiatives: the rhetoric and the potential reality.

    Science.gov (United States)

    Feeney, Oliver; Borry, Pascal; Felzmann, Heike; Galvagni, Lucia; Haukkala, Ari; Loi, Michele; Nordal, Salvör; Rakic, Vojin; Riso, Brígida; Sterckx, Sigrid; Vears, Danya

    2018-04-01

    The introduction of Web 2.0 technology, along with a population increasingly proficient in Information and Communications Technology (ICT), coupled with the rapid advancements in genetic testing methods, has seen an increase in the presence of participant-centred research initiatives. Such initiatives, aided by the centrality of ICT interconnections, and the ethos they propound seem to further embody the ideal of increasing the participatory nature of research, beyond what might be possible in non-ICT contexts alone. However, the majority of such research seems to actualise a much narrower definition of 'participation'-where it is merely the case that such research initiatives have increased contact with participants through ICT but are otherwise non-participatory in any important normative sense. Furthermore, the rhetoric of participant-centred initiatives tends to inflate this minimalist form of participation into something that it is not, i.e. something genuinely participatory, with greater connections with both the ICT-facilitated political contexts and the largely non-ICT participatory initiatives that have expanded in contemporary health and research contexts. In this paper, we highlight that genuine (ICT-based) 'participation' should enable a reasonable minimum threshold of participatory engagement through, at least, three central participatory elements: educative, sense of being involved and degree of control. While we agree with criticisms that, at present, genuine participation seems more rhetoric than reality, we believe that there is clear potential for a greater ICT-facilitated participatory engagement on all three participatory elements. We outline some practical steps such initiatives could take to further develop these elements and thereby their level of ICT-facilitated participatory engagement.

  4. PCOR, CER, and CBPR: alphabet soup or complementary fields of health research?

    Science.gov (United States)

    Burke, Jessica G; Jones, Jennifer; Yonas, Michael; Guizzetti, Lisa; Virata, Maria C; Costlow, Monica; Morton, Sally C; Elizabeth, Miller

    2013-12-01

    Comparative effectiveness research (CER) and community- based participatory research (CBPR) are two fields of research that do not have a history of strong collaboration. However, CER and CBPR researchers could benefit from interdisciplinary collaboration to design and implement relevant, timely, action-oriented research. This commentary explores field-specific definitions of stakeholders and then outlines various roles stakeholders might play within grant-funded research. Questions such as "What stakeholders should be involved?" and "How are stakeholders involved?" are addressed. The goal of this commentary is to highlight how the expertise and experiences of CBPR investigators can enhance the field of CER and to describe strategies for encouraging stakeholder involvement in CER research through the lens of CBPR. It is recommended that a team-based approach to conducting stakeholder-engaged CER encourages multiple stakeholders and "end users" to contribute their diverse expertise to the research process and contributes to the development of research with an increased likelihood of improving patient health and healthcare. © 2013 Wiley Periodicals, Inc.

  5. "Street Theatre for Edutainment": A Participatory Research with Youth in Delhi

    Science.gov (United States)

    Capila, Anjali; Bhalla, Pragati

    2010-01-01

    Youth constitute an important section of our society. They are the biggest reservoir of human resources and are the future of our country. Their development has direct affect on the development of the nation. Street Theatre is not a moment's act. It is a participatory approach which deals with fictional narratives and thus used for communicating…

  6. Elucidating the Power in Empowerment and the Participation in Participatory Action Research: A Story About Research Team and Elementary School Change

    Science.gov (United States)

    Dworski-Riggs, Deanne

    2010-01-01

    Community psychologists are increasingly using Participatory Action Research (PAR) as a way to promote social justice by creating conditions that foster empowerment. Yet, little attention has been paid to the differences between the power structure that PAR advocates and the local community power structures. This paper seeks to evaluate the level of participation in a PAR project for multiple stakeholder groups, determine how PAR was adjusted to better fit community norms, and whether our research team was able to facilitate the emergence of PAR by adopting an approach that was relevant to the existing power relations. We conclude that power differences should not be seen as roadblocks to participation, but rather as moments of opportunity for the researchers to refine their methods and for the community and the community psychologist to challenge existing power structures. PMID:20232244

  7. Future challenges for occupational health services can be prevented by proactive collaboration with the companies using the services: a participatory and reflection project.

    Science.gov (United States)

    Lydell, Marie; Hildingh, Cathrine; Söderbom, Arne; Ziegert, Kristina

    2017-01-01

    There is clearly a need for research in the field of occupational health service (OHS) for applying new perspectives. Proactive collaboration is needed between the OHSs and the companies. The customers of the companies using the services should be able to safeguard themselves from the health problems caused by the work environment through proactive collaboration with the OHSs. The main purpose of this interdisciplinary study was to explore how the stakeholders reflected to create and agree on core values for future challenges in OHS, as seen from the perspectives of OHS professionals and customer companies. An action research process was conducted. This study was divided into three phases. In phase I, the data were collected from interviews and diaries of interdisciplinary occupational health professionals (n=12). A focus group that sampled the eight managers of the customer companies was also included. In phase II, a questionnaire was developed with 24 questions focusing on examining the future challenges for OHS. The questionnaire was sent to customer companies (n=116). In phase III, a scoping review was undertaken. Three categories emerged from the analysis: "Balancing complex situations" clarified the complexity regarding senior employees; "Working with a proactive approach" indicated the need for working with a new proactive approach supporting sustainable health; and "Collaborate internally and externally" showed good relationships between the customer and the OHS, which is a mutual responsibility to both the partners. The results outlined that it is necessary to take action to apply new proactive health promotions, with a focus on workplace health promotion. The results also indicated that interventions for senior employees are of importance. This study was done in collaboration with the stakeholders from the occupational health care service center and the managers from the customer companies. The use of a participatory research design, including close

  8. Participatory dramaturgy in theatre for development

    African Journals Online (AJOL)

    pertinent questions on research in TfD. I argue in this paper that the devising process in TfD is an important stage which allows for participatory dramaturgy that is key to transformation. The next two sections of the paper will introduce the key terms; “Theatre for. Development” and “dramaturgy”. These will be followed by a ...

  9. 77 FR 66623 - National Institute on Minority Health and Health Disparities; Notice of Closed Meeting

    Science.gov (United States)

    2012-11-06

    ... and Health Disparities Special Emphasis Panel; NIMHD Community-Based Participatory Research (CBPR... Marriott Suites, 6711 Democracy Boulevard, Bethesda, MD 20817. Contact Person: Robert Nettey, M.D., Chief... of Health, 6707 Democracy Blvd., Suite 800, Bethesda, MD 20892, (301) 496-3996, [email protected

  10. Engines of alternative objectivity: Re-articulating the nature and value of participatory mental health organisations with the Hearing Voices Movement and Stepping Out Theatre Company.

    Science.gov (United States)

    Blencowe, Claire; Brigstocke, Julian; Noorani, Tehseen

    2018-05-01

    Through two case studies, the Hearing Voices Movement and Stepping Out Theatre Company, we demonstrate how successful participatory organisations can be seen as 'engines of alternative objectivity' rather than as the subjective other to objective, biomedical science. With the term 'alternative objectivity', we point to collectivisations of experience that are different to biomedical science but are nonetheless forms of objectivity. Taking inspiration from feminist theory, science studies and sociology of culture, we argue that participatory mental health organisations generate their own forms of objectivity through novel modes of collectivising experience. The Hearing Voices Movement cultivates an 'activist science' that generates an alternative objective knowledge through a commitment to experimentation, controlling, testing, recording and sharing experience. Stepping Out distinguishes itself from drama therapy by cultivating an alternative objective culture through its embrace of high production values, material culture, aesthetic standards. A crucial aspect of participatory practice is overcoming alienation, enabling people to get outside of themselves, encounter material worlds and join forces with others.

  11. Using Participatory and Service Design to Identify Emerging Needs and Perceptions of Library Services among Science and Engineering Researchers Based at a Satellite Campus

    Science.gov (United States)

    Johnson, Andrew; Kuglitsch, Rebecca; Bresnahan, Megan

    2015-01-01

    This study used participatory and service design methods to identify emerging research needs and existing perceptions of library services among science and engineering faculty, post-graduate, and graduate student researchers based at a satellite campus at the University of Colorado Boulder. These methods, and the results of the study, allowed us…

  12. The Role of Participatory Design in Mobile Application Development

    Science.gov (United States)

    Hamzah, Almed

    2018-03-01

    Mobile devices are used by people worldwide. It becomes a common equipment to complete a day-to-day activity. Inside the devices, there are numerous mobile applications that have been built for various needs. Some of these are quite successful while the other are not. The development of successful mobile application faces several challenges. In this research, we want to explore the use of participatory design method in mobile application development. Particularly, the aim of the study is to answer the question whether participatory design method has a place in the realm of mobile application development. We established two sessions of workshop to accommodate the participant to take part in the development process of mobile application. The result shows that participatory design method can determine how the user will deal with the limitations of mobile devices. It helps user to create a particular form of interaction that meets mobile devices characteristics.

  13. Collective form generation through visual participatory representation

    DEFF Research Database (Denmark)

    Day, Dennis; Sharma, Nishant; Punekar, Ravi

    2012-01-01

    In order to inspire and inform designers with the users data from participatory research, it may be important to represent data in a visual format that is easily understandable to the designers. For a case study in vehicle design, the paper outlines visual representation of data and the use...

  14. Exploring levers and barriers to accessing primary care for marginalised groups and identifying their priorities for primary care provision: a participatory learning and action research study.

    Science.gov (United States)

    O'Donnell, Patrick; Tierney, Edel; O'Carroll, Austin; Nurse, Diane; MacFarlane, Anne

    2016-12-03

    The involvement of patients and the public in healthcare has grown significantly in recent decades and is documented in health policy documents internationally. Many benefits of involving these groups in primary care planning have been reported. However, these benefits are rarely felt by those considered marginalised in society and they are often excluded from participating in the process of planning primary care. It has been recommended to employ suitable approaches, such as co-operative and participatory initiatives, to enable marginalised groups to highlight their priorities for care. This Participatory Learning and Action (PLA) research study involved 21 members of various marginalised groups who contributed their views about access to primary care. Using a series of PLA techniques for data generation and co-analysis, we explored barriers and facilitators to primary healthcare access from the perspective of migrants, Irish Travellers, homeless people, drug users, sex workers and people living in deprivation, and identified their priorities for action with regard to primary care provision. Four overarching themes were identified: the home environment, the effects of the 'two-tier' healthcare system on engagement, healthcare encounters, and the complex health needs of many in those groups. The study demonstrates that there are many complicated personal and structural barriers to accessing primary healthcare for marginalised groups. There were shared and differential experiences across the groups. Participants also expressed shared priorities for action in the planning and running of primary care services. Members of marginalised groups have shared priorities for action to improve their access to primary care. If steps are taken to address these, there is scope to impact on more than one marginalised group and to address the existing health inequities.

  15. Relational Expertise in Participatory Design

    DEFF Research Database (Denmark)

    Dindler, Christian; Iversen, Ole Sejer

    2014-01-01

    This paper positions relation expertise as a core competence in participatory design. It is an expertise that demands the participatory designer to stimulate the emergence of loosely coupled knotworks, and obtain symbiotic agreement between participants disregarding their professional and social...

  16. The quality of Australian Indigenous primary health care research focusing on social and emotional wellbeing: a systematic review.

    Science.gov (United States)

    Farnbach, Sara; Eades, Anne-Maree; Fernando, Jamie K; Gwynn, Josephine D; Glozier, Nick; Hackett, Maree L

    2017-10-11

    Objectives and importance of the study: Primary health care research focused on Aboriginal and Torres Strait Islander (Indigenous) people is needed to ensure that key frontline services provide evidence based and culturally appropriate care. We systematically reviewed the published primary health care literature to identify research designs, processes and outcomes, and assess the scientific quality of research focused on social and emotional wellbeing. This will inform future research to improve evidence based, culturally appropriate primary health care. Systematic review in accordance with PRISMA and MOOSE guidelines. Four databases and one Indigenous-specific project website were searched for qualitative, quantitative and mixed-method published research. Studies that were conducted in primary health care services and focused on the social and emotional wellbeing of Indigenous people were included. Scientific quality was assessed using risk-of-bias assessment tools that were modified to meet our aims. We assessed community acceptance by identifying the involvement of community governance structures and representation during research development, conduct and reporting. Data were extracted using standard forms developed for this review. We included 32 articles, which reported on 25 studies. Qualitative and mixed methods were used in 18 studies. Twelve articles were judged as high or unclear risk of bias, four as moderate and five as low risk of bias. Another four studies were not able to be assessed as they did not align with the risk-of-bias tools. Of the five articles judged as low risk of bias, two also had high community acceptance and both of these were qualitative. One used a phenomenological approach and the other combined participatory action research with a social-ecological perspective and incorporated 'two-way learning' principles. Of the 16 studies where a primary outcome was identified, eight aimed to identify perceptions or experiences. The

  17. Community based participatory research of breastfeeding disparities in African American women.

    Science.gov (United States)

    Kulka, Tamar Ringel; Jensen, Elizabeth; McLaurin, Sue; Woods, Elizabeth; Kotch, Jonathan; Labbok, Miriam; Bowling, Mike; Dardess, Pamela; Baker, Sharon

    2011-08-01

    OBJECTIVE: Lack of support for breastfeeding mothers has been consistently identified in the literature as a barrier for breastfeeding across racial and ethnic groups. Using a community-based participatory approach, academic and community-based partners conducted an iterative process to assess barriers, facilitators and potential mediating interventions for breastfeeding in the African-American community in Durham, North Carolina. METHODS: Eight focus groups were conducted with African-American mothers, fathers and grandmothers. Researchers transcribed and coded each focus group and analyzed using Atlas ti. 5.2. Patterns and themes that emerged informed the development of community stakeholder interviews; 41 interviews were conducted with community representatives. These findings informed the development of a support group pilot intervention. The pilot support groups were evaluated for increase in knowledge of attendees. RESULTS: Focus group and community interviews indicate that African Americans may disproportionately experience inadequate support for breastfeeding. This lack of support was reported in the home, the workplace, among peers, and from healthcare providers. The pilot support groups resulted in increased knowledge of breastfeeding among group participants OR=3.6 (95% CI: 2.5, 5.2). CONCLUSIONS: The findings from this research underscore the importance of a multi-level approach to breastfeeding support for African American women to address breastfeeding disparities.

  18. Mobilizing local innovation capacity through a simulation game in a participatory research project on agricultural innovation in El Brahmi irrigation scheme (Tunisia).

    Science.gov (United States)

    Dolinska, Aleksandra; d'Aquino, Patrick; Imache, Amar; Dionnet, Mathieu; Rougier, Jean-Emmanuel

    2015-04-01

    In the framework of the European Union and African Union cooperative research to increase Food production in irrigated farming systems in Africa (EAU4Food project) we conducted a participatory research on the possible innovative practices to increase production of dairy farms in the irrigation scheme El Brahmi in Tunisia in the face of changing economic, political and environmental conditions. Our aim was to find effective research method to stimulate farmers' participation in the innovation process. Although the capacities of farmers in producing knowledge and in innovating are recognized and the shift from the linear model of technology transfer towards more participatory approaches to innovation is postulated, in which the role of researchers changes from providing solutions towards supporting farmers in finding their own solutions, in practice, the position of farmers in shaping innovation practice and process remains weak. After a series of participatory workshops and in-depth interviews with the actors of the local innovation system we developed and tested a simple open simulation game Laitconomie for farmers. The game proved to be effective in increasing our understanding of the system as the farmers were adding new elements and rules while playing, and in mobilizing farmers' knowledge (including tacit knowledge) in the simulated innovation process. The result reported by the participants was learning how to improve farm management, soil fertility management and cow nutrition practices. Some of the participants used the game as a decision support tool. While our game and its scope were modest and mobilized only two types of players (farmers and extension agent), open simulation proved to be a useful tool to analyze a local innovation system. Designing similar type of tools that would mobilize more diverse players and hence have a larger scope can be imagined.

  19. The evolution of an evaluation: a case study using the tribal participatory research model.

    Science.gov (United States)

    Richmond, Lucinda S; Peterson, Donna J; Betts, Sherry C

    2008-10-01

    This article presents a case study of how the evaluation design for a dating violence prevention and/or youth development program for American Indian youth in Arizona evolved throughout the project. Particular attention is given to how the evaluation design was guided by the tribal participatory research model. A brief rationale for the project is presented along with literature on culturally competent evaluation and research with American Indians. A description of the project and the unique communities in which it was implemented is provided. The focus of the article is the process of how the evaluation plan changed and how various factors influenced this process (e.g., feedback from community stakeholders, conversations with funder, results of process evaluation, suggestions from literature, the authors' experience working in American Indian communities). The authors conclude with lessons learned for others to consider as they develop working relationships and evaluation plans in similar communities.

  20. The notion of participatory democracy in relation to local ward committees: The distribution of power

    Directory of Open Access Journals (Sweden)

    Leepo J. Modise

    2017-10-01

    Full Text Available This article comprises four important parts: first, the two important components of democracy, namely participatory and non-participatory or representative democracy will be discussed with special reference to the distribution of powers. Second, it will address the roles and responsibilities of ward committees within the democratic society. Third, the ethical question of the basis of the committee members’ capacity to serve on the ward committees in relation to coercive leadership (tyranny of the majority will be investigated. Fourth, the theological standpoint on the distribution of powers or participatory democracy and the role of the church to improve participatory democracy will be discussed. The research question is the following: What can be done by the country to improve participatory democracy in South Africa, through engagement with ward committees?

  1. The community-based participatory intervention effect of "HIV-RAAP".

    Science.gov (United States)

    Yancey, Elleen M; Mayberry, Robert; Armstrong-Mensah, Elizabeth; Collins, David; Goodin, Lisa; Cureton, Shava; Trammell, Ella H; Yuan, Keming

    2012-07-01

    To design and test HIV-RAAP (HIV/AIDS Risk Reduction Among Heterosexually Active African American Men and Women: A Risk Reduction Prevention Intervention) a coeducational, culture- and gender-sensitive community-based participatory HIV risk reduction intervention. A community-based participatory research process included intervention development and implementation of a 7-session coeducational curriculum conducted over 7 consecutive weeks. The results indicated a significant intervention effect on reducing sexual behavior risk (P=0.02), improving HIV risk knowledge (P=0.006), and increasing sexual partner conversations about HIV risk reduction (P= 0.001). The HIV-RAAP intervention impacts key domains of heterosexual HIV transmission.

  2. Practice of Participatory Governance in Public Policy

    Directory of Open Access Journals (Sweden)

    Алена Сергеевна Перезолова

    2018-12-01

    Full Text Available This article examines the idea of participatory democracy. The article provides case study of pilot projects aimed to engage citizens for public participation in different forms, such as: participatory budgeting, participatory modeling, public consultations and other participatory practices. The concept of public participation implied in most common methods of consultation as local meetings, public hearings, creation of working groups, public dialogue commissions, workshops, discussion forums on Web sites, contests of ideas and projects, crowdfunding projects, cooperation citizens initiatives and more consumerist type as polls and focus groups. The ability to work together becomes a resource for growth of civic consciousness, where citizens become active actors, who able to participate in public policy, resource mobilization, independent projects for realization and formation of social capital. The challenge for participatory democracy is maturity degree of civil society and examined examples of participatory practices are pilot projects that aimed formation of civic consciousness.

  3. Perspectives on past and Present Waste Disposal Practices: A community-Based Participatory Research Project in Three Saskatchewan First Nations Communities

    Directory of Open Access Journals (Sweden)

    Rebecca Zagozewski

    2011-01-01

    Full Text Available The impact of current and historical waste disposal practices on the environment and human health of Indigenous people in First Nations communities has yet to be adequately addressed. Solid waste disposal has been identified as a major environmental threat to First Nations Communities. A community-based participatory research project (CBPR was initiated by the Saskatoon Tribal Council Health and Family Services Incorporated to investigate concerns related to waste disposal in three Saskatchewan First Nations Communities. Utilizing a qualitative approach, we aimed to gain an understanding of past and present waste disposal practices and to identify any human and environmental health concerns related to these practices. One to one interviews and sharing circles were conducted with Elders. Elders were asked to share their perspectives on past and present waste disposal practices and to comment on the possible impacts these practices may have on the environment and community health. Historically waste disposal practices were similar among communities. The homeowner generated small volumes of waste, was exclusively responsible for disposal and utilized a backyard pit. Overtime waste disposal evolved to weekly pick-up of un-segregated garbage with waste disposal and open trash burning in a community dump site. Dump site locations and open trash burning were identified as significant health issues related to waste disposal practices in these communities. This research raises issues of inequity in the management of waste in First Nations Communities. It highlights the need for long-term sustainable funding to support community-based waste disposal and management strategies and the development of First Nations centered and delivered educational programs to encourage the adoption and implementation of waste reduction, reutilization and recycling activities in these communities.

  4. Move the Neighborhood: study design of a community-based participatory public open space intervention

    DEFF Research Database (Denmark)

    Pawlowski, Charlotte Skau; Winge, Laura; Carroll, Sidse

    evaluation will be used to gain knowledge of the intervention processes. DISCUSSION: The study presents new methods and approaches in the field of public open space interventions through interdisciplinary collaboration, participatory co-design approach and combination of measurements. Using both effect......BACKGROUND: A limited amount of research has examined the effect of changing public open spaces on active living. This abstract presents the study protocol of an intervention study designed in an interdisciplinary collaboration built on principles of Community-Based Participatory Research (CBPR...... and process evaluations the study will provide unique insights in the role and importance of the interdisciplinary collaboration, participatory processes, tailoring changes in public open space to local needs and wishes. These results can be used to guide urban renewal projects in deprived neighbourhoods...

  5. Evaluation of a community-based participatory farmworker eye health intervention in the "black dirt" region of New York state.

    Science.gov (United States)

    Earle-Richardson, Giulia; Wyckoff, Lynae; Carrasquillo, Marilyn; Scribani, Melissa; Jenkins, Paul; May, John

    2014-09-01

    Eye irritation is a constant hazard for migrant and seasonal farmworkers, but there are few studies of the problem or how to address it. Researchers evaluated the effect of a community-based participatory eye health intervention on farmworker eye symptoms in the Hudson Valley, NY. A randomized pre-post intervention with 2, 4-week follow-up periods was implemented with a sample of 97 farmworkers. Five eye symptoms were measured, along with utilization of protective eyewear and eye drops. Leading baseline eye symptoms were redness (49%), blurred vision (43%), itching (43%), and eye pain (29%). Significant reductions in eye pain (P = 0.009), and non-significant reductions in redness were observed for the intervention group while controls experienced increases in both. The intervention was effective in significantly reducing eye pain, and to a lesser extent, redness. Future eyewear promotion programs should offer a range of eye wear, tailor offerings to local climate and tasks, evaluate eyewear durability, and include eye drops. © 2014 Wiley Periodicals, Inc.

  6. Engendering Change within a Water Infrastructure Client Organisation: A Participatory Action Research Approach

    Directory of Open Access Journals (Sweden)

    Michael Potts

    2015-07-01

    Full Text Available Continuing demands by stakeholders for improved service delivery has caused Infrastructure Client Organisations (ICO in the UK to embark upon organisational restructuring. It is expected that such restructuring would enhance cost-effectiveness and quality in asset management and service delivery. However, this change, if not properly managed and sustained, could result in the inability of the ICO to achieve these targets. This study outlines the use of systemic thinking and Participatory Action Research (PAR in driving and managing such change within a UK-based Water and Wastewater ICO (UK WASC. Besides highlighting the context for change in response to policy, austerity and regulatory pressures, this study portrays how the PAR approach can assist in the management of change within ICOs. Furthermore, it provides an insight into the evolution of an external researcher, from novice to expert within the ICO, imbued with the required knowledge to encourage other stakeholders to participate in driving the change management process. Preliminary findings indicate the usefulness of this phased approach toward PAR. This study provides a platform for researchers wishing to engage with ICOs to improve service delivery, identifying the value of engagement, change and systemic thinking.

  7. An evaluation framework for participatory modelling

    Science.gov (United States)

    Krueger, T.; Inman, A.; Chilvers, J.

    2012-04-01

    Strong arguments for participatory modelling in hydrology can be made on substantive, instrumental and normative grounds. These arguments have led to increasingly diverse groups of stakeholders (here anyone affecting or affected by an issue) getting involved in hydrological research and the management of water resources. In fact, participation has become a requirement of many research grants, programs, plans and policies. However, evidence of beneficial outcomes of participation as suggested by the arguments is difficult to generate and therefore rare. This is because outcomes are diverse, distributed, often tacit, and take time to emerge. In this paper we develop an evaluation framework for participatory modelling focussed on learning outcomes. Learning encompasses many of the potential benefits of participation, such as better models through diversity of knowledge and scrutiny, stakeholder empowerment, greater trust in models and ownership of subsequent decisions, individual moral development, reflexivity, relationships, social capital, institutional change, resilience and sustainability. Based on the theories of experiential, transformative and social learning, complemented by practitioner experience our framework examines if, when and how learning has occurred. Special emphasis is placed on the role of models as learning catalysts. We map the distribution of learning between stakeholders, scientists (as a subgroup of stakeholders) and models. And we analyse what type of learning has occurred: instrumental learning (broadly cognitive enhancement) and/or communicative learning (change in interpreting meanings, intentions and values associated with actions and activities; group dynamics). We demonstrate how our framework can be translated into a questionnaire-based survey conducted with stakeholders and scientists at key stages of the participatory process, and show preliminary insights from applying the framework within a rural pollution management situation in

  8. Improving ethical and participatory practice for marginalized populations in biomedical HIV prevention trials: lessons from Thailand.

    Directory of Open Access Journals (Sweden)

    Dan Allman

    Full Text Available BACKGROUND: This paper presents findings from a qualitative investigation of ethical and participatory issues related to the conduct of biomedical HIV prevention trials among marginalized populations in Thailand. This research was deemed important to conduct, as several large-scale biomedical HIV prevention trials among marginalized populations had closed prematurely in other countries, and a better understanding of how to prevent similar trial closures from occurring in the future was desired. METHODS: In-depth key informant interviews were held in Bangkok and Chiang Mai, Thailand. Interviews were audio recorded, transcribed, translated and thematically analyzed. The Good Participatory Practice Guidelines for Biomedical HIV Prevention Trials (GPP guided this work. RESULTS: Fourteen interviews were conducted: 10 with policymakers, academic and community-based researchers and trial staff and four with representatives of non-governmental organizations (NGOs. Suggested ways to improve ethical and participatory practice centered on standards of HIV prevention, informed consent, communication and human rights. In particular, the need to overcome language and literacy differences was identified. Key informants felt communication was the basis of ethical understanding and trust within biomedical HIV prevention trial contexts, and thus fundamental to trial participants' ability to exercise free will. DISCUSSION: Biomedical HIV prevention trials present opportunities for inclusive and productive ethical and participatory practice. Key informants suggested that efforts to improve practice could result in better relationships between research stakeholders and research investigative teams and by extension, better, more ethical participatory trials. This research took place in Thailand and its findings apply primarily to Thailand. However, given the universality of many ethical considerations, the results of this study can inform the improvement of ethical

  9. Improving ethical and participatory practice for marginalized populations in biomedical HIV prevention trials: lessons from Thailand.

    Science.gov (United States)

    Allman, Dan; Ditmore, Melissa Hope; Kaplan, Karyn

    2014-01-01

    This paper presents findings from a qualitative investigation of ethical and participatory issues related to the conduct of biomedical HIV prevention trials among marginalized populations in Thailand. This research was deemed important to conduct, as several large-scale biomedical HIV prevention trials among marginalized populations had closed prematurely in other countries, and a better understanding of how to prevent similar trial closures from occurring in the future was desired. In-depth key informant interviews were held in Bangkok and Chiang Mai, Thailand. Interviews were audio recorded, transcribed, translated and thematically analyzed. The Good Participatory Practice Guidelines for Biomedical HIV Prevention Trials (GPP) guided this work. Fourteen interviews were conducted: 10 with policymakers, academic and community-based researchers and trial staff and four with representatives of non-governmental organizations (NGOs). Suggested ways to improve ethical and participatory practice centered on standards of HIV prevention, informed consent, communication and human rights. In particular, the need to overcome language and literacy differences was identified. Key informants felt communication was the basis of ethical understanding and trust within biomedical HIV prevention trial contexts, and thus fundamental to trial participants' ability to exercise free will. Biomedical HIV prevention trials present opportunities for inclusive and productive ethical and participatory practice. Key informants suggested that efforts to improve practice could result in better relationships between research stakeholders and research investigative teams and by extension, better, more ethical participatory trials. This research took place in Thailand and its findings apply primarily to Thailand. However, given the universality of many ethical considerations, the results of this study can inform the improvement of ethical and participatory practice in other parts of the world where

  10. Advancing system and policy changes for social and racial justice: comparing a Rural and Urban Community-Based Participatory Research Partnership in the U.S.

    Science.gov (United States)

    Devia, Carlos; Baker, Elizabeth A; Sanchez-Youngman, Shannon; Barnidge, Ellen; Golub, Maxine; Motton, Freda; Muhammad, Michael; Ruddock, Charmaine; Vicuña, Belinda; Wallerstein, Nina

    2017-02-21

    The paper examines the role of community-based participatory research (CBPR) within the context of social justice literature and practice. Two CBPR case studies addressing health inequities related to Type 2 Diabetes and Cardiovascular disease were selected from a national cross-site study assessing effective academic-community research partnerships. One CBPR partnership works with African Americans in rural Pemiscot County, Missouri and the other CBPR partnership works with African American and Latinos in urban South Bronx, New York City. Data collection included semi-structured key informant interviews and focus groups. Analysis focused on partnerships' context/history and their use of multiple justice-oriented strategies to achieve systemic and policy changes in order to address social determinants of health in their communities. Community context and history shaped each partnership's strategies to address social determinants. Four social justice approaches (identity/recognition, procedural, distributive, and structural justice) used by both partnerships were identified. These social justice approaches were employed to address underlying causes of inequitable distribution of resources and power structures, while remaining within a scientific research framework. CBPR can bridge the role of science with civic engagement and political participation, empowering community members to become political agents who integrate evidence into their social justice organizing strategies.

  11. An innovative approach to participatory health policy development in Bulgaria: The conception and first achievements of the Partnership for Health.

    Science.gov (United States)

    Dimova, Antoniya; Rohova, Maria; Hasardzhiev, Stanimir; Spranger, Anne

    2018-02-01

    The Bulgarian Partnership for Health was established in 2015 as a new forum for health policy formulation and discussion. The Partnership presents a new approach of structured and sustained stakeholder involvement to overcome the lack of public participation in health policy development and implementation. Constituted as a permanent consultative body to the Council of Ministers, the Partnership engages a wide variety of stakeholders and professionals to shape and improve health policies. The shared governance of the Partnership between the Minister of Health and a patient organisation supports the elaboration of legislative acts based on the stakeholders' collaboration in priority areas. The governance and organisational structure of the Partnership assures capacity building, fast mobilisation of experts, continuity of stakeholder involvement, and increased responsibility in health policy development and implementation. This type of participatory approach may help reconcile initially opposing positions and foster reforms often impeded by political antagonism. Persisting challenges are a rather slow process of policy development and different perceptions of key concepts among the stakeholders. As policy-making in many countries in Eastern Europe suffers from political distrust, the Partnership's approach of involving experts - and not only politicians - could provide inspiration also to other countries, which have struggled with inconsistency of health policies pursued by different governments. Copyright © 2017 The Author(s). Published by Elsevier B.V. All rights reserved.

  12. Ethical problems in health research with indigenous or originary peoples in Peru.

    Science.gov (United States)

    Minaya, Gabriela; Roque, Joel

    2015-07-01

    The varied, abrupt and amazing geography of the land of Peru is home of one of the major concentrations of indigenous peoples in the world. The asymmetry of power, however, in their relationship with the rest of society and the State is still very evident in their social exclusion, their gap in social and economic development, barriers in their access to health services as well as their marginalization and exploitation as subjects of health research. In this paper, we analyse two cases of research on indigenous populations in Peru, discuss them from the point of view of bioethics and reflect on important issues for researchers, research participants and the society, such as the need to respect different cultures, the need that the research being done is relevant to the needs of the population in which it is conducted and the necessity to empower indigenous communities in participatory research, to strengthen the institutions and to protect human rights, namely through ethics committees for research and the free, informed and meaningful informed consent. This approach should foster quality research, while at the same time fully respecting human rights and bioethics. We cannot forget that advancements in genetics, throughout the world, are very much in debt to indigenous populations.

  13. Capacity-building and Participatory Research Development of a Community-based Nutrition and Exercise Lifestyle Intervention Program (NELIP for Pregnant and Postpartum Aboriginal Women:Information Gathered from Talking Circles.

    Directory of Open Access Journals (Sweden)

    Katie Big-Canoe

    2011-05-01

    Full Text Available Objectives were to gather information from Talking Circles of Aboriginal women who participated in a maternal Nutrition and Exercise Lifestyle Intervention Program (NELIP to identify strategies to bring NELIP into the community. Twelve First Nations women participated. Several main themes were identified regarding health: balance, knowledge/education and time management. Benefits of the NELIP were improvement in health, stamina, stress, and a healthy baby, no gestational diabetes and a successful home birth, with social support as an important contributing factor for success. Suggestions for improvement for the NELIP included group walking, and incorporating more traditional foods into the meal plan. The information gathered is the first step in determining strategies using participatory research and capacity-building to develop a community-based NELIP for pregnant Aboriginal women.

  14. United Kingdom health research analyses and the benefits of shared data.

    Science.gov (United States)

    Carter, James G; Sherbon, Beverley J; Viney, Ian S

    2016-06-24

    To allow research organisations to co-ordinate activity to the benefit of national and international funding strategies requires assessment of the funding landscape; this, in turn, relies on a consistent approach for comparing expenditure on research. Here, we discuss the impact and benefits of the United Kingdom's Health Research Classification System (HRCS) in national landscaping analysis of health research and the pros and cons of performing large-scale funding analyses. The first United Kingdom health research analysis (2004/2005) brought together the 11 largest public and charity funders of health research to develop the HRCS and use this categorisation to examine United Kingdom health research. The analysis was revisited in 2009/2010 and again in 2014. The most recent quinquennial analysis in 2014 compiled data from 64 United Kingdom research organisations, accounting for 91% of all public/charitable health research funding in the United Kingdom. The three analyses summarise the United Kingdom's health research expenditure in 2004/2005, 2009/2010 and 2014, and can be used to identify changes in research activity and disease focus over this 10 year period. The 2004/2005 analysis provided a baseline for future reporting and evidence for a United Kingdom Government review that recommended the co-ordination of United Kingdom health research should be strengthened to accelerate the translation of basic research into clinical and economic benefits. Through the second and third analyses, we observed strategic prioritisation of certain health research activities and disease areas, with a strong trend toward increased funding for more translational research, and increases in specific areas such as research on prevention. The use of HRCS in the United Kingdom to analyse the research landscape has provided benefit both to individual participatory funders and in coordinating initiatives at a national level. A modest amount of data for each project is sufficient for a

  15. [Quality development within interdisciplinary transgender healthcare : Results and implications of a participatory research project].

    Science.gov (United States)

    Nieder, Timo O; Köhler, Andreas; Eyssel, Jana; Briken, Peer

    2017-09-01

    Both internationally and nationally, the objective has been set to offer specialized, coordinated, and interdisciplinary treatment to individuals with rare clinical needs, such as trans individuals (e. g., transsexual, transgender). The Interdisciplinary Transgender Health Care Center Hamburg (ITHCCH) is the first and only center in Germany to integrate all disciplines relevant to trans healthcare (THC).The research project seeks to generate valid information to support quality development and assure high-quality treatment at the ITHCCH. This was done by (a) investigating needs and concerns of trans individuals regarding interdisciplinary THC, and (b) analyzing attitudes and interests of key stakeholders.Using a participatory approach involving a work group (representatives of trans support groups and local THC professionals), researchers developed an online survey focusing on trans individuals' needs and concerns. Data from N = 415 trans-identified participants were analyzed using quantitative and qualitative methods. In addition, a short survey was used to record key stakeholders' attitudes and interests towards the ITHCCH.Healthcare offers accessed by trans individuals as part of transition related treatment vary in focus and number. For example, take-up numbers of genital surgery differ between binary and non-binary trans individuals. Crucial aspects impacting on THC quality are structural characteristics, communication/social aspects, individuality, and professionalism/quality.To ensure successful, high-quality interdisciplinary THC, feedback from (potential) patients and stakeholders is crucial. In addition, both structural development and optimizing individuality and flexibility throughout the treatment process are key. This poses a considerable challenge to the sector of THC provision.

  16. Participatory flood vulnerability assessment: a multi-criteria approach

    Directory of Open Access Journals (Sweden)

    M. M. de Brito

    2018-01-01

    Full Text Available This paper presents a participatory multi-criteria decision-making (MCDM approach for flood vulnerability assessment while considering the relationships between vulnerability criteria. The applicability of the proposed framework is demonstrated in the municipalities of Lajeado and Estrela, Brazil. The model was co-constructed by 101 experts from governmental organizations, universities, research institutes, NGOs, and private companies. Participatory methods such as the Delphi survey, focus groups, and workshops were applied. A participatory problem structuration, in which the modellers work closely with end users, was used to establish the structure of the vulnerability index. The preferences of each participant regarding the criteria importance were spatially modelled through the analytical hierarchy process (AHP and analytical network process (ANP multi-criteria methods. Experts were also involved at the end of the modelling exercise for validation. The final product is a set of individual and group flood vulnerability maps. Both AHP and ANP proved to be effective for flood vulnerability assessment; however, ANP is preferred as it considers the dependences among criteria. The participatory approach enabled experts to learn from each other and acknowledge different perspectives towards social learning. The findings highlight that to enhance the credibility and deployment of model results, multiple viewpoints should be integrated without forcing consensus.

  17. Design Anthropology in Participatory Design

    DEFF Research Database (Denmark)

    Smith, Rachel Charlotte; Gislev Kjærsgaard, Mette

    2014-01-01

    In this workshop we explore the opportunities of ethnography and design anthropology in Participatory Design (PD) as an approach to design in an increasingly global and digital world. Traditionally, ethnography has been used in PD to research real-life contexts and challenges, and as ways...... opportunities of using design anthropology as a holistic and critical approach to societal challenges, and a way for anthropologists and designers to engage in design that extends beyond the empirical....

  18. Urban Multilingualism and the Civic University: A Dynamic, Non-Linear Model of Participatory Research

    Directory of Open Access Journals (Sweden)

    Yaron Matras

    2017-12-01

    Full Text Available Drawing on the example of Multilingual Manchester, we show how a university research unit can support work toward a more inclusive society by raising awareness of language diversity and thereby helping to facilitate access to services, raise confidence among disadvantaged groups, sensitise young people to the challenges of diversity, and remove barriers. The setting (Manchester, UK is one in which globalisation and increased mobility have created a diverse civic community; where austerity measures in the wake of the financial crisis a decade ago continue to put pressure on public services affecting the most vulnerable population sectors; and where higher education is embracing a neo-liberal agenda with growing emphasis on the economisation of research, commodification of teaching, and a need to demonstrate a ‘return on investment’ to clients and sponsors. Unexpectedly, perhaps, this environment creates favourable conditions for a model of participatory research that involves co-production with students and local stakeholders and seeks to shape public discourses around language diversity as a way of promoting values and strategies of inclusion.

  19. Participatory Design in Emergency Medical Service: Designing for Future Practice

    DEFF Research Database (Denmark)

    Kristensen, Margit; Kyng, Morten; Palen, Leysia Ann

    2006-01-01

    address challenges identified by disaster sociologists when designing for major incidents. Through qualitative research and participatory design, we have ex-amined the features of EMS work and technology use in different emergency situations from the perspective of mul-tiple actors. We conceptualize...... victims in incidents—and particularly in major incidents, where on-site medical as-sessments is highly incomplete—as boundary objects over which the complex and imperfect work of coordination is done. As an outcome of our participatory design approach, we describe a set of designs in support of future EMS...

  20. Program Theory for Participatory Design

    DEFF Research Database (Denmark)

    Bossen, Claus; Dindler, Christian; Iversen, Ole Sejer

    2018-01-01

    How does participatory design work and what are the links between investments in terms of time, people and skills, the processes and the resulting effects? This paper explores program theory as a way for Participatory Design (PD) to investigate and evaluate these issues. Program theory comes out...