Sound Continuing Bonds with the Deceased: The Relevance of Music, Including Preloss Music Therapy, for Eight Bereaved Caregivers

Science.gov (United States)

O'Callaghan, Clare C.; McDermott, Fiona; Hudson, Peter; Zalcberg, John R.

2013-01-01

This study examines music's relevance, including preloss music therapy, for 8 informal caregivers of people who died from cancer. The design was informed by constructivist grounded theory and included semistructured interviews. Bereaved caregivers were supported or occasionally challenged as their musical lives enabled a connection with the…

Palliative care for cancer patients in a primary health care setting:Bereaved relatives' experience, a qualitative group interview study

DEFF Research Database (Denmark)

Neergaard, Mette Asbjørn; Olesen, Frede; Jensen, Anders Bonde

2008-01-01

care setting to explore barriers and facilitators for delivery of good palliative home care. Methods: Three focus group interviews with fourteen bereaved relatives in Aarhus County, Denmark. Results: Three main categories of experience were identified: 1) The health professionals' management, where...

Impact of specialist home-based palliative care services in a tertiary oncology set up: a prospective non-randomized observational study.

Science.gov (United States)

Dhiliwal, Sunil R; Muckaden, Maryann

2015-01-01

Home-based specialist palliative care services are developed to meet the needs of the patients in advanced stage of cancer at home with physical symptoms and distress. Specialist home care services are intended to improve symptom control and quality of life, enable patients to stay at home, and avoid unnecessary hospital admission. Total 690 new cases registered under home-based palliative care service in the year 2012 were prospectively studied to assess the impact of specialist home-based services using Edmonton symptom assessment scale (ESAS) and other parameters. Out of the 690 registered cases, 506 patients received home-based palliative care. 50.98% patients were cared for at home, 28.85% patients needed hospice referral and 20.15% patients needed brief period of hospitalization. All patients receiving specialist home care had good relief of physical symptoms (P care (OOH) through liaising with local general practitioners; 42.68% received home based bereavement care and 91.66% had good bereavement outcomes. Specialist home-based palliative care improved symptom control, health-related communication and psychosocial support. It promoted increased number of home-based death, appropriate and early hospice referral, and averted needless hospitalization. It improved bereavement outcomes, and caregiver satisfaction.

Association Between Bereaved Families' Sense of Security and Their Experience of Death in Cancer Patients: Cross-Sectional Population-Based Study.

Science.gov (United States)

Igarashi, Ayumi; Miyashita, Mitsunori; Morita, Tatsuya; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Sato, Kazuki; Yamamoto-Mitani, Noriko; Eguchi, Kenji

2016-05-01

The sense of security scale was developed to indicate care quality within the community. Bereaved families have perspective to evaluate the quality of the care system. The aim was to examine associations between end-of-life care and sense of security regarding regional cancer care among bereaved families. A cross-sectional population-based survey was conducted with families of cancer patients who died in regional areas of Japan. A total of 1046 family caregivers of patients responded to surveys (effective response rate of 65%). In multiple regression analyses, the families' higher age (P patients' end of life (P = 0.016), lower caregiving burden (P patient death, including being free from physical distress (P security. Quality of death and lower burden on family caregivers were associated with families' sense of security. This suggests strategies for improving care quality for each patient to improve the sense of security. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

The Japan HOspice and Palliative Care Evaluation Study (J-HOPE Study): views about legalization of death with dignity and euthanasia among the bereaved whose family member died at palliative care units.

Science.gov (United States)

Okishiro, Nao; Miyashita, Mitsunori; Tsuneto, Satoru; Sato, Kazuki; Shima, Yasuo

2009-01-01

There has been a debate in appropriateness of legalization of death with dignity and euthanasia in Japan. To clarify views about these issues, we conducted a large nationwide study of the bereaved whose family member died at palliative care units. The percentages of 429 bereaved family members (response rate 65%) who affirmed legal authorization were 52 for death with dignity and 45 for euthanasia and who affirmed assignment at the discretion of the physician involved were 37 for death with dignity and 38 for euthanasia. In conclusion, views about legalization of death with dignity and euthanasia among the bereaved are inconsistent. No consensus is reached as to legislation of these issues.

[Satisfaction of principal caregivers of patients followed-up by palliative care teams].

Science.gov (United States)

Fernández-Isla, L E; Conde-Valvis-Fraga, S; Fernández-Ruíz, J S

2016-10-01

To determine the satisfaction of main caregivers of deceased patients followed-up by palliative care teams. Web research on electronic data bases: PubMed and MEDES, using "Palliative Care" and "Patient Satisfaction" as main descriptors, and "Family", "Professional-Family Relations", "Quality of Health Care" and "Quality Assurance, Health Care" as secondary descriptors. Studies written in Spanish and English were included. Profile of principal caregiver: a woman between her mid-forties and her mid-fifties, usually related with the patient as a daughter, and of primary educational level. The items that the main caregivers valued the most were: a kind manner, feeling free to ask questions about problems during the process, tactful explanations, receiving information, pain management, time for answering questions, interest for emotional problems, and information about treatment. The worse valued items were: symptoms control, lack of psychological support after death, preparation for a death of a relative, keeping in touch after death, help to resolve outstanding issues, and help during grief. In general, a great majority of palliative care teams achieved excellent results. In spite of the good results obtained in satisfaction surveys from caregivers with regard to palliative care teams, it is essential to improve the quality of scientific-technical training (both from the medical and the psychological point of view), as well as to improve communicational skills among palliative care staff. Copyright © 2016 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España, S.L.U. All rights reserved.

Bereavement Care Provision in Europe

DEFF Research Database (Denmark)

Guldin, Mai-Britt; Murphy, Irene; Keegan, Orla

2015-01-01

The Bereavement Care Taskforce of the EAPC has conducted a survey on bereavement care service provision in Europe. Mai-Britt Guldin, Irene Murphy, Orla Keegan, Barbara Monroe, Maria Antonia Lacasta Reverte and Inger Benkel report on the results. One of the key findings is that not all palliative...

Perceived timeliness of referral to hospice palliative care among bereaved family members in Korea.

Science.gov (United States)

Jho, Hyun Jung; Chang, Yoon Jung; Song, Hye Young; Choi, Jin Young; Kim, Yeol; Park, Eun Jung; Paek, Soo Jin; Choi, Hee Jae

2015-09-01

We aimed to explore the perceived timeliness of referral to hospice palliative care unit (HPCU) among bereaved family members in Korea and factors associated therewith. Cross-sectional questionnaire survey was performed for bereaved family members of patients who utilized 40 designated HPCUs across Korea. The questionnaire assessed whether admission to the HPCU was "too late" or "appropriate" and the Good Death Inventory (GDI). A total of 383 questionnaires were analyzed. Of participants, 25.8 % replied that admission to HPCU was too late. Patients with hepatobiliary cancer, poor performance status, abnormal consciousness level, and unawareness of terminal status were significantly related with the too late perception. Family members with younger age and being a child of the patient were more frequently noted in the too late group. Ten out of 18 GDI scores were significantly lower in the too late group. Multiple logistic regression analysis revealed patients' unawareness of terminal status, shorter stay in the HPCU, younger age of bereaved family, and lower scores for two GDI items (staying in a favored place, living without concerning death or disease) were significantly associated with the too late group. To promote timely HPCU utilization and better quality of end of life care, patients need to be informed of the terminal status and their preference should be respected.

Determinants of a hopeful attitude among family caregivers in a palliative care setting.

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Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Kang, Hee-Ju; Shin, Il-Seon; Shim, Hyun-Jeong; Cho, Sang-Hee; Chung, Ik-Joo; Yoon, Jin-Sang

2014-01-01

This study investigated the determinants of a hopeful attitude among family caregivers involved with palliative care. We investigated a broad range of factors for the patient-family dyad in a palliative care setting using a cross-sectional design. The patients' sociodemographic, clinical and psychological factors were evaluated, as well as caregiver-related sociodemographic and psychological factors, including depressive symptoms, burden, coping style and religiosity. Caregivers were divided into two groups based on a hopeful or nonhopeful attitude and assessed using the abbreviated version of the seven-item Beck Hopelessness Scale (BHS-7). Of 304 analyzed dyads, 210 (69.1%) caregivers showed a hopeful attitude, with a BHS-7 score of 0. The adjusted logistic regression analyses showed that caregivers' hopeful attitude was determined by only their psychological status: less depressive symptoms [odds ratio (OR), 0.86; 95% confidence interval (CI), 0.83-0.90], active coping strategy (OR, 1.12; 95% CI, 1.07-1.18) and lower burden (OR, 0.93; 95% CI, 0.88-0.99). In a subpopulation analysis (n=200), higher religiosity was a significantly associated factor. Healthcare providers need to pay attention to the psychological vulnerability of caregivers to encourage a hopeful attitude. Additional studies of longitudinal design for hopeful attitude throughout the trajectory of palliative care are necessary. Copyright © 2014 Elsevier Inc. All rights reserved.

Validity and reliability of the Palliative Care Transition Measure for Caregivers (PCTM-C).

Science.gov (United States)

D'Angelo, Daniela; Mastroianni, Chiara; Artico, Marco; Biagioli, Valentina; Latina, Roberto; Guarda, Michela; Piredda, Michela; De Marinis, Maria Grazia

2018-01-21

Patients suffering from advanced disease face different care transitions. The transition from acute to palliative care is challenging and may lead to the discontinuity of care. Family caregivers become important sources of information, as patients begin to experience difficulties in coping with emotional transition events. The Care Transition Measure was developed to evaluate care transitions as experienced by the elderly. It has never been used in palliative care. The aim of this study was to test the validity and reliability of a modified version of the Palliative Care Transition Measure, specifically the Palliative Care Transition Measure for Caregivers (PCTM-C). The study included two main phases. Phase I focused on the construction of a modified version of the Palliative Care Transition Measure through two focus groups and by computing the content validity index. Phase II focused on testing the psychometric properties of the PCTM-C on 272 family caregivers through confirmatory factor analysis. Result The content validity index for each of the items was higher than 0.80, whereas that for the scale was 0.95. The model tested with confirmatory factor analysis fitted the data well and confirmed that the transition measures referred to communication, integrated care and a trusting-relationship, and therefore the core dimensions of continuity according to existing conceptual models. The internal consistency was high (Cronbach's alpha = 0.94). Significance of results The PCTM-C proved to be a suitable measure of the quality of such transitions. It may be used in clinical practice as a continuity quality indicator and has the potential to guide interventions to enhance family caregivers' experience of care continuity.

Caregiver Responsiveness to the Family Bereavement Program: What predicts responsiveness? What does responsiveness predict?

OpenAIRE

Schoenfelder, Erin N.; Sandler, Irwin N.; Millsap, Roger E.; Wolchik, Sharlene A.; Berkel, Cady; Ayers, Timothy S.

2013-01-01

The study developed a multi-dimensional measure to assess participant responsiveness to a preventive intervention, and applied this measure to study how participant baseline characteristics predict responsiveness and how responsiveness predicts program outcomes. The study was conducted with caregivers who participated in the parenting-focused component of the Family Bereavement Program (FBP), a prevention program for families that have experienced parental death. The sample consisted of 89 ca...

[Struggling for normal in an instable situation - informal caregivers self-management in palliative home care. A meta-synthesis].

Science.gov (United States)

Kreyer, Christiane; Pleschberger, Sabine

2014-10-01

Family caregivers play a key role in palliative home care for persons with advanced cancer. Although research has shown numerous burdens and strains of family caregiving, there is a lack of family-oriented support strategies in palliative home care. Little is known about family caregivers' self-management in this context so far. Qualitative research provides insight into families' perspectives of the transition to and management of palliative care at home and can be used as a starting point. The aim of the study was to increase knowledge of family caregivers' self-management in palliative home care by synthesizing evidence from qualitative research. Based on a systematic review of literature a meta-synthesis was conducted following the approach of Noblit and Hare (1988). A total of 13 qualitative studies from six countries, published from 2002 onward, formed the basis for an interpretative synthesis. Caring for a person with advanced cancer at the end of life at home is characterized by an instable transition process in which families are 'struggling for normal'. Six different family self-management strategies to deal with this were identified: acknowledging the transition, restructuring everyday life, maintaining balance in family relationships, taking responsibility for care, using social support, and acquiring caring-skills. Self-management strategies may provide a key for supporting family caregivers in palliative home care by focusing on resources and problem solving skills of families.

Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers.

Science.gov (United States)

Sarmento, Vera P; Gysels, Marjolein; Higginson, Irene J; Gomes, Barbara

2017-12-01

To understand patients and family caregivers' experiences with home palliative care services, in order to identify, explore and integrate the key components of care that shape the experiences of service users. We performed a meta-ethnography of qualitative evidence following PRISMA recommendations for reporting systematic reviews. The studies were retrieved in 5 electronic databases (MEDLINE, EMBASE, PsycInfo, BNI, CINAHL) using 3 terms and its equivalents ('Palliative', 'Home care', 'Qualitative research') combined with 'AND', complemented with other search strategies. We included original qualitative studies exploring experiences of adult patients and/or their family caregivers (≥18 years) facing life-limiting diseases with palliative care needs, being cared for at home by specialist or intermediate home palliative care services. 28 papers reporting 19 studies were included, with 814 participants. Of these, 765 were family caregivers and 90% were affected by advanced cancer. According to participants' accounts, there are 2 overarching components of home palliative care: presence (24/7 availability and home visits) and competence (effective symptom control and skilful communication), contributing to meet the core need for security. Feeling secure is central to the benefits experienced with each component, allowing patients and family caregivers to focus on the dual process of living life and preparing death at home. Home palliative care teams improve patients and caregivers experience of security when facing life-limiting illnesses at home, by providing competent care and being present. These teams should therefore be widely available and empowered with the resources to be present and provide competent 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/.

Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers

Science.gov (United States)

Gomes, Barbara; Calanzani, Natalia; Curiale, Vito; McCrone, Paul; Higginson, Irene J

2013-01-01

Background Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. Objectives 1. To quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarise the current evidence on cost-effectiveness. Search methods We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). Main results We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive

Effect of palliative care nurse champions on the quality of dying in the hospital according to bereaved relatives: A controlled before-and-after study

NARCIS (Netherlands)

F.E. Witkamp (Frederika); L. van Zuylen (Lia); C.C.D. van der Rijt (Carin); A. van der Heide (Agnes)

2016-01-01

textabstractBackground: To improve the quality of end-of-life care, hospitals increasingly appoint palliative care nurse champions. Aim: We investigated the effect of nurse champions on the quality of life during the last 3 days of life and the quality of dying as experienced by bereaved relatives.

Identifying socio-environmental factors that facilitate resilience among Canadian palliative family caregivers: a qualitative case study.

Science.gov (United States)

Giesbrecht, Melissa; Wolse, Faye; Crooks, Valorie A; Stajduhar, Kelli

2015-06-01

In Canada, friends and family members are becoming increasingly responsible for providing palliative care in the home. This is resulting in some caregivers experiencing high levels of stress and burden that may ultimately surpass their ability to cope. Recent palliative care research has demonstrated the potential for caregiver resilience within such contexts. This research, however, is primarily focused on exploring individual-level factors that contribute to resilience, minimizing the inherent complexity of this concept, and how it is simultaneously influenced by one's social context. Therefore, our study aims to identify socio-environmental factors that contribute to palliative family caregiver resilience in the Canadian homecare context. Drawing on ethnographic fieldnotes and semistructured interviews with family caregivers, care recipients, and homecare nurses, this secondary analysis employs an intersectionality lens and qualitative case study approach to identify socio-environmental factors that facilitate family caregivers' capacity for resilience. Following a case study methodology, two cases are purposely selected for analysis. Findings demonstrate that family caregiver resilience is influenced not only by individual-level factors but also by the social environment, which sets the lived context from which caregiving roles are experienced. Thematic findings of the two case studies revealed six socio-environmental factors that play a role in shaping resilience: access to social networks, education/knowledge/awareness, employment status, housing status, geographic location, and life-course stage. Findings contribute to existing research on caregiver resilience by empirically demonstrating the role of socio-environmental factors in caregiving experiences. Furthermore, utilizing an intersectional approach, these findings build on existing notions that resilience is a multidimensional and complex process influenced by numerous related variables that intersect

WA42 Proving its worth - changing public policy for palliative care, end of life care and bereavement through advocacy and communications.

Science.gov (United States)

Edghill, Angela; Donohoe, Miriam

2015-04-01

The 2015 palliative care budget is €72 million (Euros) but up to €1.3 billion spent on end of life care annually - much of this larger figure unplanned and uncoordinated. Geographic and other inequities evident in palliative care provision. Build support for the development and implementation of a National Strategy on Palliative Care, End of Life and Bereavement. Multi-layered approach to raising awareness and building consensus: Targeting the correct audience who can make change happen Presenting robust evidence including costs justifying reform and investment Demonstrating that issues affect a significant number of people Sharing experience and knowledge Knowing their policy priorities Staying resilient - advancing and introducing new angles to argument Engaging directly as advocates within the political system at all political levels - developing relationships with politicians Identifying advocates in the public service to promote policy change Using a variety of new and existing projects and programmes Encouraging patients and families to be self-advocates - using a novel project for discussing and recording future care preferences Supporting healthcare professionals to become effective advocates for patients Creating alliances to lobby for policy development Using media opportunities to sell the message The recognition of the importance of a strategic approach to palliative and end of life care acknowledged in Parliamentary Committee Report affords an opportunity to develop further policy and practice. This a long - term exercise, dependent on supporting the implementation plan, building momentum and promoting a public dialogue on sensitive issues around dying, death and bereavement. © 2015, 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.

Methodological considerations for researching the financial costs of family caregiving within a palliative care context.

Science.gov (United States)

Gardiner, Clare; Allen, Ruth; Moeke-Maxwell, Tess; Robinson, Jackie; Gott, Merryn

2016-12-01

The financial impact of family caregiving in a palliative care context has been identified as an issue which requires further research. However, little is known about how research should be conducted in this area. The aim of this study was to explore the opinions of family caregivers in New Zealand regarding the need to conduct research relating to the financial costs of family caregiving and to explore their perspectives on acceptable and feasible methods of data collection. A qualitative study design was adopted. Semistructured interviews were conducted with 30 family caregivers who were either currently caring for a person with palliative care needs or had done so in the past year. All participants felt that research relating to the costs of family caregiving within a palliative care context was important. There was little consensus regarding the most appropriate methods of data collection and administration. Online methods were preferred by many participants, although face-to-face methods were particularly favoured by Ma¯ori participants. Both questionnaires and cost diaries were felt to have strengths and weaknesses. Prospective longitudinal designs are likely to be most appropriate for future research, in order to capture variations in costs over time. The lack of consensus for a single preferred method makes it difficult to formulate specific recommendations regarding methods of data collection; providing participants with options for methods of completion may therefore be appropriate. 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/.

Impact of caring for people living with HIV on the psychosocial well-being of palliative caregivers

Directory of Open Access Journals (Sweden)

Lavashni Valjee

2014-02-01

Full Text Available Acquired immunodeficiency syndrome (AIDS continues to be a serious public health issue, and it is often the caregivers who carry the brunt of the epidemic. Caregivers of people with AIDS face distinctive demands that could make them more prone to occupational stress, with serious consequences for their psychosocial well-being. The impact of caring for people living with HIV infection on the psychosocial well-being of palliative caregivers was investigated using in-depth interviews and questionnaires in 28 participants. The results indicated no burnout, but occupational stress was prevalent. Factors impacting negatively on well-being were stressors inherent in AIDS care, such as suffering and dying of the persons being cared for, work-related stressors such as heavy workload, lack of support and ineffective coping mechanisms. Positive aspects of caring such as job satisfaction, holistic palliative care, effective coping mechanisms and psychosocial support were identified. Recommendations to curb the negative effects of caregiving are provided.

Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers

Directory of Open Access Journals (Sweden)

Barbara Gomes

Full Text Available BACKGROUND: Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. OBJECTIVES: 1. to quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarize the current evidence on cost-effectiveness. METHODS: Search methods: We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria: We included randomised controlled trials (RCTs, controlled clinical trials (CCTs, controlled before and after studies (CBAs and interrupted time series (ITSs evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis: One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs for the primary outcome (death at home. MAIN RESULTS: We identified 23 studies (16 RCTs, 6 of high quality, including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure

Assessment of a Statewide Palliative Care Team Training Course: COMFORT Communication for Palliative Care Teams.

Science.gov (United States)

Wittenberg, Elaine; Ferrell, Betty; Goldsmith, Joy; Ragan, Sandra L; Paice, Judith

2016-07-01

Despite increased attention to communication skill training in palliative care, few interprofessional training programs are available and little is known about the impact of such training. This study evaluated a communication curriculum offered to interprofessional palliative care teams and examined the longitudinal impact of training. Interprofessional, hospital-based palliative care team members were competitively selected to participate in a two-day training using the COMFORT(TM SM) (Communication, Orientation and options, Mindful communication, Family, Openings, Relating, Team) Communication for Palliative Care Teams curriculum. Course evaluation and goal assessment were tracked at six and nine months postcourse. Interprofessional palliative care team members (n = 58) representing 29 teams attended the course and completed course goals. Participants included 28 nurses, 16 social workers, 8 physicians, 5 chaplains, and one psychologist. Precourse surveys assessed participants' perceptions of institution-wide communication performance across the continuum of care and resources supporting optimum communication. Postcourse evaluations and goal progress monitoring were used to assess training effectiveness. Participants reported moderate communication effectiveness in their institutions, with the weakest areas being during bereavement and survivorship care. Mean response to course evaluation across all participants was greater than 4 (scale of 1 = low to 5 = high). Participants taught an additional 962 providers and initiated institution-wide training for clinical staff, new hires, and volunteers. Team member training improved communication processes and increased attention to communication with family caregivers. Barriers to goal implementation included a lack of institutional support as evidenced in clinical caseloads and an absence of leadership and funding. The COMFORT(TM SM) communication curriculum is effective palliative care communication

Palliative care clients' and caregivers' notion of fear and their strategies for overcoming it.

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Penman, Joy; Ellis, Bronwyn

2015-06-01

This paper aims to clarify our understanding of fear and explore the strategies employed by people with life-limiting conditions and their caregivers in addressing the emotion of fear as they journey through the dying process. The role of fear is discussed: different kinds of fear, the tangible and intangible measures by which people manage their fear, and the ways of transcending fear. The findings of a larger research project funded by the Australian Department of Health and Ageing are drawn upon. In-depth interviews were conducted with clients and caregivers relating to the psychosocial and emotional issues in palliative care. Secondary analysis was utilized to examine the perceptions of fear in this cohort. While there were many other findings, the results highlighted in this paper relate to the notion of fear among interview participants. Interview data showed that people with life-limiting conditions and their caregivers had different types of fear and employed a variety of strategies to deal with fear. Four themes emerged embodying these strategies: calling on their own resilience and inner resources, maintaining human relationships, gaining the ability to "keep one step ahead" in the dying process, and engaging in spirituality and religion. The implications of the findings for healthcare professionals are highlighted. The recognition of emotions is embedded in palliative care; healthcare professionals should view the management of emotions as an integral part of professional practice. Addressing fear is essential because unresolved fear can impinge on one's ability to cope. Our paper brings together different perspectives on fear and how vulnerable individuals attempt to cope with it while at the same time providing a view of the challenges confronting healthcare professionals who are engaged with them and committed to optimizing health outcomes for palliative care clients and their caregivers.

Finding Paradise Within: How Spirituality Protects Palliative Care Clients and Caregivers From Depression.

Science.gov (United States)

Penman, Joy

2017-06-01

The aims of this article are to explore the experience of depression among palliative care clients and caregivers, describe the strategies they use in coping with depression, and clarify the role of spirituality in preventing and/or overcoming depression. This article discusses an aspect of the findings of a larger doctoral study that explored the nature of spirituality and spiritual engagement from the viewpoint of individuals with life-limiting conditions and their caregivers. van Manen's phenomenology was used in the study. The data generated from the doctoral study were subjected to secondary analysis to uncover the experience of depression. The methodology underpinning the secondary analysis was phenomenology also by van Manen. Fourteen clients and caregivers from across regional and rural South Australia informed the study. Data collection involved in-depth nonstructured home-based interviews that were audiotaped and transcribed verbatim. The findings highlighted relate to participants succumbing to depression, but having spiritual beliefs and practices helped them cope. One of the most insightful understanding was the role spirituality played in protecting individuals from depression, encapsulated in the theme "finding paradise within." Spirituality, understood from a religious or secular perspective, must be embedded in palliative care as it assisted in preventing and overcoming depression.

Bed care for patients in palliative settings: considering risks to caregivers and bed surfaces.

Science.gov (United States)

Fragala, Guy

2015-02-01

Ensuring patients are comfortable in bed is key to effective palliative care, but when moving and positioning patients in bed, health professionals face an occupational risk of injury. The turning and positioning (TAP) system is a new method of moving patients in bed, that evidence has shown to reduce the risk of injury to caregivers. Providing the correct bed surface is another aspect of bed care essential to the comfort of the palliative patient, and to aid wound prevention and treatment. It is important to take a patient-centred approach when considering the most appropriate bed surface patients. This article provides an overview and discussion of these two aspects of bed care for palliative patients.

Strengthening Effective Parenting Practices over the Long Term: Effects of a Preventive Intervention for Parentally Bereaved Families

Science.gov (United States)

Hagan, Melissa J.; Tein, Jenn-Yun; Sandler, Irwin N.; Wolchik, Sharlene A.; Ayers, Tim S.; Luecken, Linda J.

2012-01-01

This study tested the effect of the Family Bereavement Program (FBP), a preventive intervention for bereaved families, on effective parenting (e.g., caregiver warmth, consistent discipline) 6 years after program completion. Families (n = 101; 69% female caregivers; 77% Caucasian, 11% Hispanic) with children between ages 8 and 16 who had…

PA2 Satisfaction with information received: perceptions of the patient and the informal caregiver.

Science.gov (United States)

Dawber, R; Armour, K; Carter, C; Ferry, P; Meystre, C

2015-04-01

Provision of information to patients and families is a priority of palliative care. Lack of information on symptoms, treatment and disease progress adversely affects patients' and caregivers' abilities to self manage and participate in decision making and care. Qualitative reports of end of life care suggest caregivers seek more information than patients. Ignorance of this need may hamper health promotion strategies and limitation of patient and caregiver morbidity during end of life and bereavement processes. To compare satisfaction of dying patients with information given; to proxy satisfaction estimates on the patient's behalf. Prospective study comparing assessment of satisfaction with information received by nurse, informal caregiver and dying patient (>64 years) in hospital. Assessments made within 24 h, using patient and caregiver versions of the palliative outcome scale (POS). weighted kappa for agreement between proxy and patient. Informal caregivers overestimate dissatisfaction with level of information given compared to patients. Weighted kappa patient versus ICG 0.187 (slight agreement), n = 50. The disparity between patient and proxy information satisfaction reflects the complexity of participatory strategies to limit morbidity at the end of life. Proxy over- estimation of patient dissatisfaction with information received may reflect the caregivers own dissatisfaction. As death approaches, caregivers require more information than patients, their burden increases and they become the interpreter of patient symptoms. Ignorance may lead to overestimation of symptoms, early breakdown of social care, and unplanned admission, risking death other than in the patients preferred place. Meeting caregiver information needs may reduce caregiver burden and improve proxy assessments, reducing patient and caregiver morbidity. © 2015, 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.

Applying feminist, multicultural, and social justice theory to diverse women who function as caregivers in end-of-life and palliative home care.

Science.gov (United States)

Mackinnon, Christopher J

2009-12-01

Women are largely responsible for providing care to terminally ill family members at home. The goal of this review is to conceptualize diverse women's experiences in palliative home care from feminist, multicultural, and social justice perspectives. Peer-reviewed manuscripts were identified using the following databases: CIMAHL, psycINFO, and pubMED. The following search terms were used: women/mothers/daughters, Caregiving, family caregivers, feminism, culture, multiculturalism, and palliative home care. Article reference lists were also reviewed. The majority of penitent articles which formed the basis for the arguments presented were drawn from nursing, medicine, and counseling psychology scholarship. The application of feminist, multicultural, and social justice theory brings to attention several potential issues female caregivers may experience. First, there exist diverse ways in which women's Caregiving is manifested that tend to correspond with variations in culture, relationship, and age. Second, it is important to attend to changing expectations placed on women as a result of Caregiving at the end of life. Third, the changing power dynamics women may experience in end of life Caregiving are very complex. The principle finding of the review was the highlighting of potential risks that culturally diverse female caregivers are likely to face at the end of life. The application of social justice theory provides a number of implications for practice and policy. Specifically, the identifying significant concerns regarding female caregivers in palliative home care, as well as suggesting ways to appropriately attend to these concerns, and oppression of women is less likely to be perpetuated, specific areas for future research in this domain are identified.

Communication Disparity Between the Bereaved and Others: What Hurts Them and What Is Unhelpful? A Nationwide Study of the Cancer Bereaved.

Science.gov (United States)

Ishida, Mayumi; Onishi, Hideki; Morita, Tatsuya; Uchitomi, Yosuke; Shimizu, Megumi; Tsuneto, Satoru; Shima, Yasuo; Miyashita, Mitsunori

2018-04-01

The importance of communication between the cancer bereaved and others has been emphasized, but little is known about the more problematic aspects of this communication such as "unhelpful communication." The aim of this study was to establish which types of communication are perceived by the bereaved to be unhelpful. We conducted a cross-sectional, anonymous, nationwide survey at 103 certified hospice facilities/palliative care units in Japan. A total of 630 (63%) bereaved responded. Over 60% of the bereaved experiencing such communication considered it to be unhelpful, with the most unhelpful communication being "They emphasized the positive aspects of death." Thirteen items related to communication were separated into two factors ("advice for recovery" and "comments on cancer") by factor analysis. "Comments on cancer" were more unhelpful to them and were more often provided by those around them. With regard to "advice for recovery," losing a spouse was a stronger predictor with a higher odds ratio for communication distress than losing a parent (odds ratio, 5.34; 95% CI, 1.63-17.57). A number of the bereaved have experienced unhelpful communication regarding advice on dealing with bereavement and cancer. To prevent putting an unnecessary burden on the bereaved with such unhelpful communication, it is essential to understand problematic aspects. Even when people have no intention of hurting the bereaved, some communication may do so. Communication with the bereaved is also a core clinical skill required by health professionals, and further efforts are required to support the grieving process. Copyright © 2018 The Authors. Published by Elsevier Inc. All rights reserved.

'No matter what the cost': A qualitative study of the financial costs faced by family and whānau caregivers within a palliative care context.

Science.gov (United States)

Gott, Merryn; Allen, Ruth; Moeke-Maxwell, Tess; Gardiner, Clare; Robinson, Jackie

2015-06-01

There has been significant attention paid in recent years to the economic costs of health service provision for people with palliative care needs. However, little is known about the costs incurred by family caregivers who typically provide the bulk of care for people at the end of life. To explore the nature and range of financial costs incurred by family caregiving within a palliative care context. In-depth qualitative interviews were conducted with 30 family/whānau caregivers who were currently caring for someone with a life-limiting illness or had done so within the preceding year. Narrative analysis was used to identify impacts and costs at the personal, interpersonal, sociocultural and structural levels. Auckland, New Zealand. Costs of caregiving were significant and, for participants, resulted in debt or even bankruptcy. A range of direct (transport, food and medication) and indirect costs (related to employment, cultural needs and own health) were reported. A multi-level qualitative analysis revealed how costs operated at a number of levels (personal, interpersonal, sociocultural and structural). The palliative care context increased costs, as meeting needs were prioritised over cost. In addition, support from statutory service providers to access sources of financial support was limited. Families incur significant financial costs when caring for someone at the end of life. Research is now needed to quantify the financial contribution of family and whānau caregiving within a palliative care context, particularly given attempts in many countries to shift more palliative care provision into community settings. © The Author(s) 2015.

‘No matter what the cost’: A qualitative study of the financial costs faced by family and whānau caregivers within a palliative care context

Science.gov (United States)

Allen, Ruth; Moeke-Maxwell, Tess; Gardiner, Clare; Robinson, Jackie

2015-01-01

Background: There has been significant attention paid in recent years to the economic costs of health service provision for people with palliative care needs. However, little is known about the costs incurred by family caregivers who typically provide the bulk of care for people at the end of life. Aim: To explore the nature and range of financial costs incurred by family caregiving within a palliative care context. Design: In-depth qualitative interviews were conducted with 30 family/whānau caregivers who were currently caring for someone with a life-limiting illness or had done so within the preceding year. Narrative analysis was used to identify impacts and costs at the personal, interpersonal, sociocultural and structural levels. Setting: Auckland, New Zealand. Findings: Costs of caregiving were significant and, for participants, resulted in debt or even bankruptcy. A range of direct (transport, food and medication) and indirect costs (related to employment, cultural needs and own health) were reported. A multi-level qualitative analysis revealed how costs operated at a number of levels (personal, interpersonal, sociocultural and structural). The palliative care context increased costs, as meeting needs were prioritised over cost. In addition, support from statutory service providers to access sources of financial support was limited. Conclusion: Families incur significant financial costs when caring for someone at the end of life. Research is now needed to quantify the financial contribution of family and whānau caregiving within a palliative care context, particularly given attempts in many countries to shift more palliative care provision into community settings. PMID:25680378

Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers.

Science.gov (United States)

Philip, Rekha Rachel; Philip, Sairu; Tripathy, Jaya Prasad; Manima, Abdulla; Venables, Emilie

2018-02-14

The well lauded community-based palliative care programme of Kerala, India provides medical and social support, through home-based care, for patients with terminal illness and diseases requiring long-term support. There is, however, limited information on patient characteristics, caregivers and programme performance. This study was carried out to describe: i) the patients enrolled in the programme from 1996 to 2016 and their diagnosis, and ii) the care-giver characteristics and palliative care support from nurses and doctors in a cohort of patients registered during 2013-2015. A descriptive study was conducted in the oldest community-based palliative clinic in Kerala. Data were collected from annual patient registers from 1996 to 2016 and patient case records during the period 2013-2015. While 91% of the patients registered in the clinic in 1996 had cancer, its relative proportion came down to 32% in 2016 with the inclusion of dementia-related illness (19%) cardiovascular accidents (17%) and severe mental illness (5%).Among patients registered during 2013-15, the median number of home visits from nurses and doctors in 12 months were five and one respectively. In the same cohort, twelve months' post-enrolment, 56% of patients died, 30% were in continuing in active care and 7% opted out. Those who opted out of care were likely to be aged care-giver at home, 85% of these care-givers being female. The changing dynamics over a 20-year period of this palliative care programme in Kerala, India, highlights the need for similar programmes to remain flexible and adapt their services in response to a growing global burden of Non Communicable Diseases. While a high death rate is expected in this population, the high proportion of patients choosing to stay in the programme suggests that home-based care is valued within this particular group. A diverse range of clinical and psycho-social support skills are required to assist families and their caregivers when caring for a

Dyadic psychological intervention for patients with cancer and caregivers in home-based, specialized palliative care

DEFF Research Database (Denmark)

von Heymann-Horan, Annika Berglind; Puggaard, Louise Berg; Nissen, Kathrine Grovn

2017-01-01

Patients with incurable cancer and their informal caregivers have numerous psychological and psychosocial needs. Many of these patients wish to receive their care and die at home. Few home-based specialized palliative care (SPC) interventions systematically integrate psychological support. We...... present a psychological intervention for patient–caregiver dyads developed for an ongoing randomized controlled trial (RCT) of home-based SPC, known as Domus, as well as the results of an assessment of its acceptability and feasibility. The Domus model of SPC for patients with incurable cancer...... and their caregivers offered systematic psychological assessment and dyadic intervention as part of interdisciplinary care. Through accelerated transition to SPC, the aim of the model was to enhance patients' chances of receiving care and dying at home. Integration of psychological support sought to facilitate...

Strengthening Effective Parenting Practices over the Long-Term: Effects of a Preventive Intervention for Parentally Bereaved Families

OpenAIRE

Hagan, Melissa J.; Tein, Jenn-Yun; Sandler, Irwin N.; Wolchik, Sharlene A.; Ayers, Tim S.; Luecken, Linda J.

2012-01-01

This study tested the effect of the Family Bereavement Program (FBP), a preventive intervention for bereaved families, on effective parenting (e.g. caregiver warmth, consistent discipline) six years after program completion. Families (n=101; 69% female caregivers; 77% Caucasian, 11% Hispanic) with children between ages 8–16 who had experienced the death of one parent were randomized to the FBP (n=54) or a literature control condition (n=47). Multiple regression analyses conducted within a mul...

Measuring relatives’ perspectives on the quality of palliative care: the Consumer Quality Index Palliative Care.

NARCIS (Netherlands)

Claessen, S.J.J.; Francke, A.L.; Sixma, H.J.; Veer, A.J.E. de; Deliens, L.

2013-01-01

Context: A Consumer Quality Index (CQ-index) is a questionnaire assessing the actual care experiences and how important the recipient finds certain care aspects, as well as the priorities for improving quality. A CQ-index Palliative Care (CQ-index PC) for bereaved relatives was developed to measure

The impact of dreams of the deceased on bereavement: a survey of hospice caregivers.

Science.gov (United States)

Wright, Scott T; Kerr, Christopher W; Doroszczuk, Nicole M; Kuszczak, Sarah M; Hang, Pei C; Luczkiewicz, Debra L

2014-03-01

Many recently bereaved persons experience vivid and deeply meaningful dreams featuring the presence of the deceased that may reflect and impact the process of mourning. The present study surveyed 278 bereaved persons regarding their own perspective of the relationship between dreams and the mourning process. Fifty eight percent of respondents reported dreams of their deceased loved ones, with varying levels of frequency. Most participants reported that their dreams were either pleasant or both pleasant and disturbing, and few reported purely disturbing dreams. Prevalent dream themes included pleasant past memories or experiences, the deceased free of illness, memories of the deceased's illness or time of death, the deceased in the afterlife appearing comfortable and at peace, and the deceased communicating a message. These themes overlap significantly with previous models of bereavement dream content. Sixty percent of participants felt that their dreams impacted their bereavement process. Specific effects of the dreams on bereavement processes included increased acceptance of the loved one's death, comfort, spirituality, sadness, and quality of life, among others. These results support the theory that dreams of the deceased are highly prevalent among and often deeply meaningful for the bereaved. While many counselors are uncomfortable working with dreams in psychotherapy, the present study demonstrates their therapeutic relevance to the bereaved population and emphasizes the importance for grief counselors to increase their awareness, knowledge, and skills with regards to working with dreams.

Perfil de cuidadores de enfermos en cuidados paliativos Caregivers of palliative care home patients

Directory of Open Access Journals (Sweden)

Natalia Luxardo

2009-10-01

. Family caregiving has become an important issue of palliative care. The purposes of this study were: 1 to identify salient issues of caregiving for family members of palliative care patients and 2 to propose a classification based on different profiles of caregivers. The research was exploratory-descriptive, based on a flexible design, specifically case studies. Caregivers (n=50 were selected randomly among relatives of home. Palliative care patients attended in the Lanari Institute (University of Buenos Aires, Argentina during 2007-2008. Qualitative data were gathered through unstructured, open ended interviews in the home setting. Quantitative data were collected with a self-completion questionnaire and were analyzed with SPSS (12.01. Three dimensions were evaluated: a attitudes of the caregiver towards the treatments, b perceptions of the caregivers of the needs and wishes of the patient and c evaluation of their own role as caregiver. Four types of informal caregivers were identified: 1 satisfactory carers, based on a well-organized system of relatives and friends involved in the caring situation, 2 potentially vulnerable carers, those involved in situations apparently controlled, but with factors which could trigger a spiral of deterioration, 3 overwhelmed carers, who explicitly express difficulties in being able to achieve the daily goals for the patients´ comfort and 4 isolated carers, composed by lonely wives wishing "not to bother" others.

Pengaruh Bereavement Life Review terhadap Kesejahteraan Spiritual pada Keluarga Pasien Stroke

Directory of Open Access Journals (Sweden)

Muhamad Zulfatul A’la

2017-08-01

adalah melihat pengaruh bereavement life review untuk penyakit kronis yang lain, seperti diabetes melitus atau kanker. Selain itu, indikator psikologis pasien dan keluarga sebagai output intervensi perlu dikaji lebih mendalam. Kata kunci: Bereavement life review, keluarga pasien stroke, keperawatan spiritual, kesejahateraan paliatif. Influence of Bereavement Life Review on Spiritual Well-Being of Stroke Family Caregiver Abstract Spirituality is a protective factor of grieving process in patient and family with chronic illness. Bereavement life review is one of the interventions which is enhancing the spiritual well-being in cancer diseases. Cancer and Stroke are chronic diseases. The purpose of this study was to determine the effect of bereavement life review of the spiritual well-being of stroke family. Quasi-experimental with pretest posttest control group used in study. Sample in this study are stroke family who caring the stroke patient in hospital which is 28 respondents. The intervention group was given bereavement life review with two sessions which given by expert in psychiatric nursing. Spiritual well-being was measured by SWBS (spiritual well-being scale. Data analysis were using a dependent t-test, Mann Whitney and Wilcoxon. Homogenity of respondent characteristics showed that it have not correlation between control and intervention group (p > 0,05. The study showed the difference in the mean posttest scores of spiritual well-being of the control group with the intervention group (98.71 ± 3.65 and 106.5 ± 1.83, p = 0.000. There were differences in the mean scores pretest to posttest spiritual well-being in the intervention group (99.07 ± 2.95 and 106.5 ± 1.83, p = 0.001. Bereavement life review is a process of enhancing spirituality through recontextualization, forgiveness, and reflection proccess that strengthening coping process. Bereavement life review has positive effect on the spiritual well-being of the stroke family which can be considered as an

Palliative and End-of-Life Care for Lesbian, Gay, Bisexual, and Transgender (LGBT) Cancer Patients and Their Caregivers.

Science.gov (United States)

Cloyes, Kristin G; Hull, William; Davis, Andra

2018-02-01

To identify the unique needs of lesbian, gay, bisexual, and transgender (LGBT) cancer patients and caregivers, and review recommendations supporting more effective and inclusive palliative and end-of-life care. Published research and clinical guidelines. Transitions in care raise particular challenges for LGBT patients, including provider communication, perceptions of safety and acceptance, and assessing and respecting patients' definitions of family and spirituality. LGBT patients and their caregivers need competent nurses to support them, especially during transitions. Implementing LGBT-inclusive education, training, and practice will improve outcomes for LGBT cancer patients and their caregivers - and potentially all patients. Copyright © 2017 Elsevier Inc. All rights reserved.

Volunteers in Specialist Palliative Care: A Survey of Adult Services in the United Kingdom

Science.gov (United States)

Burbeck, Rachel; Low, Joe; Sampson, Elizabeth L.; Bravery, Ruth; Hill, Matthew; Morris, Sara; Ockenden, Nick; Payne, Sheila

2014-01-01

Abstract Background: Worldwide, the demand for specialist palliative care is increasing but funding is limited. The role of volunteers is underresearched, although their contribution reduces costs significantly. Understanding what volunteers do is vital to ensure services develop appropriately to meet the challenges faced by providers of palliative care. Objective: The study's objective is to describe current involvement of volunteers with direct patient/family contact in U.K. specialist palliative care. Design: An online survey was sent to 290 U.K. adult hospices and specialist palliative care services involving volunteers covering service characteristics, involvement and numbers of volunteers, settings in which they are involved, extent of involvement in care services, specific activities undertaken in each setting, and use of professional skills. Results: The survey had a 67% response rate. Volunteers were most commonly involved in day care and bereavement services. They entirely ran some complementary therapy, beauty therapy/hairdressing, and pastoral/faith-based care services, and were involved in a wide range of activities, including sitting with dying patients. Conclusions: This comprehensive survey of volunteer activity in U.K. specialist palliative care provides an up-to-date picture of volunteer involvement in direct contact with patients and their families, such as providing emotional care, and the extent of their involvement in day and bereavement services. Further research could focus on exploring their involvement in bereavement care. PMID:24475743

Palliative Care in Cancer

Science.gov (United States)

... care is usually provided by palliative care specialists, health care practitioners who have received special training and/or certification in palliative care. They provide holistic care to the patient and family or caregiver ...

Enhancing the quality of life for palliative care cancer patients in Indonesia through family caregivers: a pilot study of basic skills training.

Science.gov (United States)

Kristanti, Martina Sinta; Setiyarini, Sri; Effendy, Christantie

2017-01-17

Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family member. This research is a pilot project aiming to evaluate how basic skills training (BST) given to family caregivers could enhance the quality of life (QoL) of palliative care cancer patients in Indonesia. The study is a prospective quantitative with pre and post-test design. Thirty family caregivers of cancer patients were trained in basic skills including showering, washing hair, assisting for fecal and urinary elimination and oral care, as well as feeding at bedside. Patients' QoL were measured at baseline and 4 weeks after training using EORTC QLQ C30. Hypothesis testing was done using related samples Wilcoxon Signed Rank. A paired t-test and one-way ANOVA were used to check in which subgroups was the intervention more significant. The intervention showed a significant change in patients' global health status/QoL, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation and financial hardship of the patients. Male patient's had a significant effect on global health status (qol) (p = 0.030); female patients had a significant effect on dyspnea (p = 0.050) and constipation (p = 0.038). Younger patients had a significant effect in global health status/QoL (p = 0.002). Patients between 45 and 54 years old had significant effect on financial issue (p = 0.039). Caregivers between 45 and 54 years old had significant effect on patients' dyspnea (p = 0.031). Basic skills training for family caregivers provided some changes in some aspects of QoL of palliative cancer patients. The intervention showed promises in maintaining the QoL of cancer patients considering socio-economic and cultural challenges in the provision of

Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study.

Science.gov (United States)

Davies, Nathan; Rait, Greta; Maio, Laura; Iliffe, Steve

2017-09-01

People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Qualitative study using in-depth interviews and analysed using thematic analysis. Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study.

Science.gov (United States)

Verberne, Lisa M; Kars, Marijke C; Schouten-van Meeteren, Antoinette Y N; Bosman, Diederik K; Colenbrander, Derk A; Grootenhuis, Martha A; van Delden, Johannes J M

2017-03-01

In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC becomes increasingly important. The objective is to gain insight into parental caregiving based on the lived experience of parents with a child with a life-limiting disease. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with a malignant or non-malignant disease, receiving PPC. Based on their ambition to be a 'good parent', parents caring for a child with a life-limiting disease strived for three aims: controlled symptoms and controlled disease, a life worth living for their ill child and family balance. These aims resulted in four tasks that parents performed: providing basic and complex care, organising good quality care and treatment, making sound decisions while managing risks and organising a good family life. Parents need early explanation from professionals about balancing between their aims and the related tasks to get a grip on their situation and to prevent becoming overburdened. What is Known: • In paediatric palliative care, parents are confronted with increasing caregiving demands. • Parenting is often approached from the perspective of stress. What is New: • Parents strive for three aims: controlled symptoms and controlled disease, a life worth living for their child and family balance. • Parents perform four tasks: providing basic and complex care, organising good quality care, making decisions while managing risks and organising a good family life. • Professionals need insight into the parents' aims and tasks from the parental perspective to strengthen parents' resilience.

Bereaved Caregivers to Patients With High-Grade Glioma

DEFF Research Database (Denmark)

Piil, Karin; Jarden, Mary

2018-01-01

PURPOSE: The disease and treatment trajectory of patients with high-grade glioma is a burdensome period for the patients' closest relatives who become informal caregivers. Caregivers experiencing this demanding shift in role are at risk of developing symptoms such as depression. Few studies have...... care planning within neuro-oncology caregiving to establish evidence-based practice guidelines and recommendations....

Bereavement and behavioral changes as risk factors for cognitive decline in adults with Down syndrome.

Science.gov (United States)

Fonseca, Luciana Mascarenhas; de Oliveira, Melaine Cristina; de Figueiredo Ferreira Guilhoto, Laura Maria; Cavalheiro, Esper Abrao; Bottino, Cássio Mc

2014-01-01

Cognitive decline and Alzheimer's disease often affect older adults with Down syndrome (DS) much earlier than those in the general population. There is also growing evidence of the effects of negative life events on the mental health and behavior of individuals with intellectual disability. However, to our knowledge, this is the first study investigating objective cognitive decline following bereavement in aging individuals with DS. The objective of this study was to determine whether cognitive decline correlates with bereavement following the recent loss of a caregiver or with behavioral changes in a sample of adult individuals with DS who do not meet the criteria for dementia or depression, using the longitudinal assessment of the Cambridge Cognitive Examination (CAMCOG), together with the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE). We evaluated 18 subjects at baseline and over a follow-up period of 14-22 months, attempting to determine whether cognitive decline correlates with bereavement following the recent loss of the main caregiver or with behavioral changes (as assessed with the Neuropsychiatric Inventory). The mean rate of change in CAMCOG was -1.83 (standard deviation 4.51). Behavioral changes had a significant direct influence on cognitive decline. When bereavement was accompanied by behavioral changes, the probability of cognitive decline was 87% (odds ratio 3.82). The occurrence of behavioral changes attributed to bereavement following the loss of the primary caregiver significantly increases the probability of cognitive decline in individuals with DS. Longitudinal comparison of the CAMCOG and use of the IQCODE appear to enrich the analysis of cognitive decline in individuals with DS. Further studies involving larger samples are needed in order to corroborate and expand upon our findings, which can have implications for the clinical management of older adults with DS.

Communicatively Constructing the Bright and Dark Sides of Hope: Family Caregivers? Experiences during End of Life Cancer Care

OpenAIRE

Koenig Kellas, Jody; Castle, Katherine M.; Johnson, Alexis; Cohen, Marlene Z.

2017-01-01

(1) Background: The communication of hope is complicated, particularly for family caregivers in the context of cancer who struggle to maintain hope for themselves and their loved ones in the face of terminality. In order to understand these complexities, the current study examines the bright and dark sides of how hope is communicated across the cancer journey from the vantage point of bereaved family caregivers; (2) Methods: We analyzed interviews with bereaved family caregivers using qualita...

Understanding parental behavior in pediatric palliative care: Attachment theory as a paradigm.

Science.gov (United States)

Kearney, Joan A; Byrne, Mary W

2015-12-01

The objective of this conceptual paper was to present important constructs in attachment theory as they apply to parent and caregiver behavior in pediatric palliative care. Clarification of these constructs is provided with specific reference to their clinical application as well as their reflection in current empirical literature. Social attachment theory is proposed as a developmentally contextual model for the study of parenting in pediatric palliative and end-of-life care. A comprehensive search was conducted of pertinent literatures. These included classic as well as recent theory and research in attachment theory in addition to the empirical literatures on parent and family experience in pediatric palliative care, serious illness, and beyond to parental bereavement. Other relevant literature was examined with respect to the phenomena of concern. The empirical literature in pediatric palliative care supports the use of central concepts in attachment theory as foundational for further inquiry. This is evidenced in the emphasis on the importance of parental protection of the child, as well as executive activities such as decision making and other prominent parental operations, parental psychological resolution of the child's diagnosis and illness as well as coping and meaning making, and the core significance of parental relationships with providers who provide secure-base and safe-haven functions. The promise for developing integrated, conceptually based interventions from construction through implementation is of urgent importance to children and families receiving pediatric palliative care services. Focusing on key parental behaviors and processes within the context of a well-studied and contextually appropriate model will inform this task efficiently. The attachment paradigm meets these criteria and has promise in allowing us to move forward in developing well-defined, inclusive, and conceptually grounded protocols for child and family psychosocial research

Influence of caregiver personality on the burden of family caregivers of terminally ill cancer patients.

Science.gov (United States)

Kim, Ha-Hyun; Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Shin, Il-Seon; Shim, Hyun-Jeong; Hwang, Jun-Eul; Chung, Ik-Joo; Yoon, Jin-Sang

2016-02-01

To determine the influence of caregiver personality and other factors on the burden of family caregivers of terminally ill cancer patients. We investigated a wide range of factors related to the patient-family caregiver dyad in a palliative care setting using a cross-sectional design. Caregiver burden was assessed using the seven-item short version of the Zarit Burden Interview (ZBI-7). Caregiver personality was assessed using the 10-item short version of the Big Five Inventory (BFI-10), which measures the following five personality dimensions: extroversion, agreeableness, conscientiousness, neuroticism, and openness. Patient- and caregiver-related sociodemographic and psychological factors were included in the analysis because of their potential association with caregiver burden. Clinical patient data were obtained from medical charts or by using other measures. Multivariate linear regression analysis was performed to identify the independent factors associated with caregiver burden. We analyzed 227 patient-family caregiver dyads. The multivariate analysis revealed that caregiver extroversion was protective against caregiver burden, whereas depressive symptoms in caregivers were related to increased burden. Neuroticism was positively correlated with caregiver burden, but this relationship was nonsignificant following adjustment for depressive symptoms. Patient-related factors were not significantly associated with caregiver burden. Evaluating caregiver personality traits could facilitate identification of individuals at greater risk of high burden. Furthermore, depression screening and treatment programs for caregivers in palliative care settings are required to decrease caregiver burden.

Palliative Care: Improving Nursing Knowledge, Attitudes, and Behaviors
.

Science.gov (United States)

Harden, Karen; Price, Deborah; Duffy, Elizabeth; Galunas, Laura; Rodgers, Cheryl

2017-10-01

Oncology nurses affect patient care at every point along the cancer journey. This creates the perfect opportunity to educate patients and caregivers about palliative care early and often throughout treatment. However, healthcare providers frequently do not have the knowledge and confidence to engage in meaningful conversations about palliative care.
. The specific aims were to improve oncology nurses' palliative care knowledge, attitudes, and behaviors by providing a palliative care nursing education program. An additional aim was to increase the number of conversations with patients and families about palliative care.
. This project had a pre-/post-test design to assess knowledge, attitudes, and behaviors at baseline and one month after implementation of an established education curriculum. The teaching strategy included one four-hour class for oncology RNs with topics about the definition of palliative care, pain and symptom management, and how to have palliative care conversations.
. Results showed a statistically significant difference after the educational intervention for knowledge, attitudes, and behaviors. The number of conversations with patients and caregivers about palliative and end-of-life care increased significantly.

Patient- and Caregiver-Reported Assessment Tools for Palliative Care: Summary of the 2017 Agency for Healthcare Research and Quality Technical Brief.

Science.gov (United States)

Aslakson, Rebecca A; Dy, Sydney M; Wilson, Renee F; Waldfogel, Julie; Zhang, Allen; Isenberg, Sarina R; Blair, Alex; Sixon, Joshua; Lorenz, Karl A; Robinson, Karen A

2017-12-01

Assessment tools are data collection instruments that are completed by or with patients or caregivers and which collect data at the individual patient or caregiver level. The objectives of this study are to 1) summarize palliative care assessment tools completed by or with patients or caregivers and 2) identify needs for future tool development and evaluation. We completed 1) a systematic review of systematic reviews; 2) a supplemental search of previous reviews and Web sites, and/or 3) a targeted search for primary articles when no tools existed in a domain. Paired investigators screened search results, assessed risk of bias, and abstracted data. We organized tools by domains from the National Consensus Project Clinical Practice Guidelines for Palliative Care and selected the most relevant, recent, and highest quality systematic review for each domain. We included 10 systematic reviews and identified 152 tools (97 from systematic reviews and 55 from supplemental sources). Key gaps included no systematic review for pain and few tools assessing structural, cultural, spiritual, or ethical/legal domains, or patient-reported experience with end-of-life care. Psychometric information was available for many tools, but few studies evaluated responsiveness (sensitivity to change) and no studies compared tools. Few to no tools address the spiritual, ethical, or cultural domains or patient-reported experience with end-of-life care. While some data exist on psychometric properties of tools, the responsiveness of different tools to change and/or comparisons between tools have not been evaluated. Future research should focus on developing or testing tools that address domains for which few tools exist, evaluating responsiveness, and comparing tools. Copyright © 2017 American Academy of Hospice and Palliative Medicine. All rights reserved.

Enhancing the quality of life for palliative care cancer patients in Indonesia through family caregivers: a pilot study of basic skills training

NARCIS (Netherlands)

Kristanti, M.S.; Setiyarini, S.; Effendy, C.

2017-01-01

BACKGROUND: Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family

Family Caregivers’ Social Representations of Death in a Palliative Care Context

OpenAIRE

Sabrina Lessard; Bernard-Simon Leclerc; Suzanne Mongeau

2016-01-01

The objective of this study was to consider the social representations of death of family caregivers in a palliative care context. The authors focused on the analysis of 23 interviews with family caregivers who cared for a terminally ill person at home and/or in a specialized palliative care unit, in Québec, Canada. The finding showed that family caregivers had different images that specifically represented death: (a) ...

The Melbourne Family Support Program: evidence-based strategies that prepare family caregivers for supporting palliative care patients

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Hudson, Peter; Aranda, Sanchia

2014-01-01

Background A key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research. Purpose To provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers. Methods Developmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test. Results Four psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers’ preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme. Conclusions The interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated. PMID:24644195

The Melbourne Family Support Program: evidence-based strategies that prepare family caregivers for supporting palliative care patients.

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Hudson, Peter; Aranda, Sanchia

2014-09-01

A key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research. To provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers. Developmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test. Four psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers' preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme. The interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated. 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.

Smarter palliative care for cancer: Use of smartphone applications

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Nisha Rani Jamwal

2016-01-01

Full Text Available Smartphones are technologically advanced mobile phone devices which use software similar to computer-based devices as a user-friendly interface. This review article is aimed to inform the palliative care professionals, cancer patients and their caregivers about the role of smartphone applications (apps in the delivery of palliative care services, through a brief review of existing literature on the development, feasibility, analysis, and effectiveness of such apps. There is a dearth need for sincere palliative care clinicians to work together with software professionals to develop the suitable smartphone apps in accordance with the family/caregivers' necessities and patients' biopsychosocial characteristics that influence the technology driven evidence informed palliative cancer care.

Satisfaction with palliative care after stroke: a prospective cohort study.

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Blacquiere, Dylan; Bhimji, Khadija; Meggison, Hilary; Sinclair, John; Sharma, Michael

2013-09-01

The determinants of satisfaction for families of acute stroke patients receiving palliative care have not been extensively studied. We surveyed families to determine how they perceived palliative care after stroke. Families of patients palliated after ischemic stroke, intracerebral, or subarachnoid hemorrhage were approached. Four weeks after the patient's death, families were administered the After-Death Bereaved Family Member Interview to determine satisfaction with the care provided. Fifteen families participated. Families were most satisfied with participation in decision making and least satisfied with attention to emotional needs. In stroke-specific domains, families had less satisfaction with artificial feeding, hydration, and communication. Overall satisfaction was high (9.04 out of 10). Families of patients receiving palliative care at our institution showed generally high satisfaction with palliation after stroke; specific domains were identified for improvement. Further study in larger populations is required.

Effects of Support, Counselling and Therapy Before and After the Loss: Can we Really Help Bereaved People?

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Henk Schut

2010-09-01

Full Text Available Can other persons, personally or professionally, help bereaved individuals deal with the loss of a loved one? An increasing number of empirical studies, as well as qualitative and quantitative reviews, have addressed this question. Here, the main findings are summarised and implications for researchers and practitioners considered. First, provision of help from the informal social network and volunteers/professionals in the post-loss period is examined. Second, and uniquely in this research area, examination is extended to the efficacy of intervention for family members prior to their bereavement (i.e., in the context of palliative/end-of-life care. To what extent do the pre-loss patterns mirror those for post-bereavement intervention efficacy? A main conclusion is that intervention is not effective for bereaved persons in general, either when this is provided before or after the actual loss. It is important to identify and target high-risk persons. Further scientific and clinical implications of the patterns of results are discussed.

Measuring the Impact of the Home Health Nursing Shortage on Family Caregivers of Children Receiving Palliative Care.

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Weaver, Meaghann S; Wichman, Brittany; Bace, Sue; Schroeder, Denice; Vail, Catherine; Wichman, Chris; Macfadyen, Andrew

2018-06-01

The national nursing shortage translates into a gap in home nursing care available to children with complex, chronic medical conditions and their family caregivers receiving palliative care consultations. A total of 38 home health nursing surveys were completed by families receiving pediatric palliative care consultation services at a freestanding children's hospital in the Midwest. The gap in the average number of nursing hours allotted versus received was 40 h/wk per family, primarily during evening hours. Parents missed an average of 23 hours of employment per week to provide hands-on nursing care at home, ranking stress regarding personal employment due to nursing shortage at 6.2/10. Families invested an average of 10 h/mo searching for additional nursing coverage and often resorted to utilizing more than 6 different home nurse coverage personnel per month. Families reported multiple delays to hospital discharges (mean, 15 days per delay) due to inability to find home nursing coverage. Respiratory technology and lack of Medicaid coverage ( P home nursing access. This study examines how the pediatric home nursing shortage translates into a lived experience for families with children with complex medical conditions receiving palliative care.

The potential therapeutic value for bereaved relatives participating in research: An exploratory study.

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Germain, Alison; Mayland, Catriona R; Jack, Barbara A

2016-10-01

Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable. This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data. The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits. The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind.

Bereavement and behavioral changes as risk factors for cognitive decline in adults with Down syndrome

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Fonseca LM

2014-11-01

Full Text Available Luciana Mascarenhas Fonseca,1 Melaine Cristina de Oliveira,2 Laura Maria de Figueiredo Ferreira Guilhoto,3,4 Esper Abrao Cavalheiro,3,4 Cássio MC Bottino1 1Old Age Research Group, Department of Psychiatry, 2Institute of Mathematics and Statistics, University of São Paulo, 3Association of Parents and Friends of People with Intellectual Disability of São Paulo, 4Federal University of São Paulo, São Paulo, Brazil Background: Cognitive decline and Alzheimer’s disease often affect older adults with Down syndrome (DS much earlier than those in the general population. There is also growing evidence of the effects of negative life events on the mental health and behavior of individuals with intellectual disability. However, to our knowledge, this is the first study investigating objective cognitive decline following bereavement in aging individuals with DS.Objective: The objective of this study was to determine whether cognitive decline correlates with bereavement following the recent loss of a caregiver or with behavioral changes in a sample of adult individuals with DS who do not meet the criteria for dementia or depression, using the longitudinal assessment of the Cambridge Cognitive Examination (CAMCOG, together with the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE.Methods: We evaluated 18 subjects at baseline and over a follow-up period of 14–22 months, attempting to determine whether cognitive decline correlates with bereavement following the recent loss of the main caregiver or with behavioral changes (as assessed with the Neuropsychiatric Inventory.Results: The mean rate of change in CAMCOG was -1.83 (standard deviation 4.51. Behavioral changes had a significant direct influence on cognitive decline. When bereavement was accompanied by behavioral changes, the probability of cognitive decline was 87% (odds ratio 3.82. Conclusion: The occurrence of behavioral changes attributed to bereavement following the loss of

Palliative care and neurology

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Boersma, Isabel; Miyasaki, Janis; Kutner, Jean

2014-01-01

Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. PMID:24991027

Family Caregivers’ Social Representations of Death in a Palliative Care Context

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Sabrina Lessard

2016-03-01

Full Text Available The objective of this study was to consider the social representations of death of family caregivers in a palliative care context. The authors focused on the analysis of 23 interviews with family caregivers who cared for a terminally ill person at home and/or in a specialized palliative care unit, in Québec, Canada. The finding showed that family caregivers had different images that specifically represented death: (a losses as different kinds of “deaths,” (b palliative care as a place to negotiate with death, and (c last times as confirmation of the end. These images highlight the meaning attributed to the body and the position of the dying person in our Western society. Representations of palliative care reveal a kind of paradox, a place of respect and of “gentle death,” and a place where death is almost too omnipresent. They also show the strong beliefs surrounding the use of painkillers at the end of life. Finally, these images refer to end-of-life personal rituals viewed as support for the passage into a new state of being. This study provides a better understanding of the common sense of death for family caregivers in a palliative care context and of the meanings of this emotional subject.

Cuidador familiar do idoso em cuidados paliativos: o processo de morrer no domicílio Family caregiver of elderly patients in palliative care: the process of dying at home

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Flavia Renata Fratezi

2011-07-01

Full Text Available Este estudo teve como objetivos: identificar e analisar o significado do processo de morrer para cuidadores familiares de pacientes idosos em cuidados paliativos. Tratou-se de pesquisa qualitativa com utilização de entrevista. Os dados foram analisados por conteúdo. A presença de doenças crônicas que levam o idoso a necessitar de cuidados paliativos impõe sobre o cuidador familiar sentimentos complexos e ambivalentes. A proximidade e inevitabilidade da morte do idoso colaboram para intensificar esses sentimentos, mas possibilitam ao cuidador resignificar como vivencia essa experiência. Diante desta complexidade, torna-se evidente que a equipe paliativista precisa colaborar junto ao cuidador familiar, no sentido de tentar amenizar essa situação.This study sought to identify and analyze the significance of the process of dying for family caregivers of elderly patients in palliative care. It involved qualitative research with the use of interviews. The data were scrutinized by content analysis. The presence of chronic diseases that lead the elderly patient to require palliative care imposes a series of complex and ambivalent feelings on the family caregiver. The proximity and inevitability of death of the elderly patient exacerbate these feelings, but also lead the caregiver to reconsider how to handle this experience. Given this complexity, it becomes clear that the palliative tem need to work with family caregivers, to try to alleviate this situation.

PALLIATIVE CARE – ITS ROLE IN HEALTHCARE SYSTEMS

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Urška Lunder

2003-11-01

Full Text Available Background. In the last decades a palliative care has been well established in the majority of West European countries. However, majority of these countries are not able to follow needs for palliative care because of demographic changes (older population, changes of morbidity pattern (increase of chronic progressive diseases and social changes (disability of families to care for their relatives at their homes. Research is showing evidence on palliative care effectiveness at end of life and in bereavement. There is still a great need for healthcare professionals’ change in their attitudes, knowledge and skills. In many National strategic plans (United Kingdom, Ireland, Sweden, Australia, New Zealand and Canada palliative care becomes a priority in the national public health. New organizational planning supports establishement of palliative care departments in hospitals and other healthcare settings and consultant teams at all levels of healthcare system. Hospices, caritative and independent organizations, will remain as a source of good clinical practice and philosophy of care at the end of life also in the future.

Improving aspects of palliative care for children

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Jagt, C.T.

2017-01-01

This thesis is about improving aspects of palliative care for children, and covers three different areas of quality of care. First of all, palliative care should be anticipating. To be able to deliver this anticipating care, caregivers should know what to expect. The first two chapters of the thesis

Fatigue in Advanced Cancer Patients: Congruence Between Patients and Their Informal Caregivers About Patients' Fatigue Severity During Cancer Treatment With Palliative Intent and Predictors of Agreement

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Poort, Hanneke; Peters, Marlies E. W. J.; Gielissen, Marieke F. M.; Verhagen, Constans A. H. H. V. M.; Bleijenberg, Gijs; van der Graaf, Winette T. A.; Wearden, Alison J.; Knoop, Hans

2016-01-01

Informal caregivers (ICs) are increasingly involved in the monitoring of symptoms during advanced cancer patients' treatment with palliative intent. A common but subjective symptom during this extended treatment phase is fatigue. This exploratory longitudinal study aimed to determine agreement

Fatigue in Advanced Cancer Patients: Congruence Between Patients and Their Informal Caregivers About Patients' Fatigue Severity During Cancer Treatment With Palliative Intent and Predictors of Agreement

NARCIS (Netherlands)

Poort, H.; Peters, M.E.W.J.; Gielissen, M.F.M.; Verhagen, C.A.H.H.V.M.; Bleijenberg, G.; Graaf, W.T.A. van der; Wearden, A.J.; Knoop, H.

2016-01-01

CONTEXT: Informal caregivers (ICs) are increasingly involved in the monitoring of symptoms during advanced cancer patients' treatment with palliative intent. A common but subjective symptom during this extended treatment phase is fatigue. OBJECTIVES: This exploratory longitudinal study aimed to

Nurses' Experiences of End-of-life Photography in NICU Bereavement Support.

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Martel, Sara; Ives-Baine, Lori

2018-06-07

To qualitatively explore neonatal intensive care nurses' experiences with end-of-life photography as part of their bereavement support work with families. An Interpretive Phenomenological Analysis with data collected through a focus group (n = 6) and one semi-structured interview (n = 1) with neonatal nurses from a Level 3/4 NICU in a Canadian pediatric hospital. Participants' comfort with EOL photography developed over time through exposure to bereavement scenarios and positive experiences with families. Participants' experienced a feeling of pressure to balance the photography with clinical responsibilities and find the right time to introduce photography while being sensitive to family experiences. Participants experienced EOL photography as something tangible to give families and were satisfied knowing the images might play an important role in the family's healing after the NICU. All participants had come to value EOL photography as a positive and meaningful part of their work with bereaved families. Identified challenges related to balancing the practice with the unpredictable flow and demands of critical care and to developing an appreciation for and comfort with the photography as part of their healing and the families' healing. Findings contribute insight into care-provider experience that can inform best practices, training, and staff support for palliative and bereavement work in neonatal and pediatric settings. The findings suggest a need to support nurses emotionally and clinically in carrying out this photography as part of their care for families. Copyright © 2018 Elsevier Inc. All rights reserved.

A Delphi Study on Staff Bereavement Training in the Intellectual and Developmental Disabilities Field

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Gray, Jennifer A.; Truesdale, Jesslyn

2015-01-01

The Delphi technique was used to obtain expert panel consensus to prioritize content areas and delivery methods for developing staff grief and bereavement curriculum training in the intellectual and developmental disabilities (IDD) field. The Delphi technique was conducted with a panel of 18 experts from formal and informal disability caregiving,…

The Phenomenology and Course of Depression in Parentally Bereaved and Non-Bereaved Youth

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Hamdan, Sami; Melhem, Nadine M.; Porta, Giovanna; Payne, Monica Walker; Brent, David A.

2012-01-01

Objective: To compare the phenomenology and course of bereavement-related depression to depression that occurred later in the course of bereavement and to depression in non-bereaved youth. Method: This sample is drawn from a cohort of parentally bereaved youth and non-bereaved controls followed for approximately 5 years. Three groups of depressed…

Self-care for the caregiver.

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Radziewicz, R M

2001-12-01

Palliative care nurses can face unique stressors and compassion fatigue working in their field. Working with the dying and their families, communicating with other health care professionals, and handling ethical issues are often sources of stress in palliative care. The biochemistry and theory of stress are discussed. Various strategies to cope with caregiver stress are explained.

The impact of Asian American value systems on palliative care: illustrative cases from the family-focused grief therapy trial.

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Mondia, Stephen; Hichenberg, Shira; Kerr, Erica; Eisenberg, Megan; Kissane, David W

2012-09-01

Clinicians meet people from different ethnic backgrounds, yet need to respond in culturally sensitive ways. This article focuses on Asian American families. Within a randomized controlled trial of family therapy commenced during palliative care and continued into bereavement, 3 families of Asian American background were examined qualitatively from a cultural perspective by listening to recordings of 26 therapy sessions and reviewing detailed supervision notes compiled by each therapist. A synopsis of each family's therapy narrative is presented. Prominent themes include family closeness, respect for hierarchy within the family, gender-determined roles, intergenerational tensions, preoccupation with shame and limited emotional expressiveness. Family therapists working with culturally diverse families need to pay thoughtful attention to ethnic issues as they strive to support them during palliative care and bereavement.

The Japan HOspice and Palliative Care Evaluation Study 3: Study Design, Characteristics of Participants and Participating Institutions, and Response Rates.

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Aoyama, Maho; Morita, Tatsuya; Kizawa, Yoshiyuki; Tsuneto, Satoru; Shima, Yasuo; Miyashita, Mitsunori

2017-08-01

This article describes the whole picture of Japan HOspice and Palliative Care Evaluation Study 3 (J-HOPE3 Study) including study design and demographic data. The aims of the J-HOPE3 study were to (1) evaluate the process, structure, and outcome of palliative care in the following care settings: acute hospitals, inpatient hospice/palliative care units (PCUs), and home hospice services; (2) examine bereaved family members' self-reported psychosocial conditions, such as grief and depression, as bereavement outcomes; (3) provide data to ensure and improve the quality of care provided by participating institutions through feedback concerning results for each institution; and (4) perform additional studies to explore specific clinical research questions. We conducted a cross-sectional, anonymous, self-report questionnaire survey involving patients' bereaved family members in 20 acute hospitals, 133 PCUs, and 22 home hospice services between May and July 2014. Two types of questionnaires were used: main and specific studies questionnaires. The questionnaire was sent to totally 13 584, and 10 157 returned the questionnaire. The analysis included 9126 family members' questionnaires from acute hospitals, PCUs, and home hospice services. Respondents' average age was 61.6 years, 55% were women, and 40% had been married to the deceased. With respect to the characteristics of participating institutions, most institutions did not have religious affiliations, and most PCUs and home hospice services provided bereavement care. These results of the analysis of common and additional questionnaires could play an important role in clinical settings, quality improvement, research, and public accountability.

The magnitude, share and determinants of unpaid care costs for home-based palliative care service provision in Toronto, Canada.

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Chai, Huamin; Guerriere, Denise N; Zagorski, Brandon; Coyte, Peter C

2014-01-01

With increasing emphasis on the provision of home-based palliative care in Canada, economic evaluation is warranted, given its tremendous demands on family caregivers. Despite this, very little is known about the economic outcomes associated with home-based unpaid care-giving at the end of life. The aims of this study were to (i) assess the magnitude and share of unpaid care costs in total healthcare costs for home-based palliative care patients, from a societal perspective and (ii) examine the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty-nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home-based palliative care programme provided by the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital, Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to care-giving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care-giving costs were the largest component - $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out-of-pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. Seemingly unrelated regression estimation suggested that the share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care-giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home-based palliative care in future. © 2013 John Wiley & Sons Ltd.

Religious care required for Japanese terminally ill patients with cancer from the perspective of bereaved family members.

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Okamoto, Takuya; Ando, Michiyo; Morita, Tatsuya; Hirai, Kei; Kawamura, Ryo; Mitsunori, Miyashita; Sato, Kazuki; Shima, Yasuo

2010-02-01

The aim of this study was to explore the most suitable religious care for Japanese terminally ill patients with cancer based on the opinions of bereaved family members. A multicenter questionnaire survey on palliative care service was sent to 592 bereaved family members of patients with cancer who were admitted to palliative care units in Japan, and 430 responded by mail. In the section of the questionnaire about religious care, 382 responses were used for quantitative analysis, and 71 responses about religious care for qualitative analysis. In the current study, the 71 responses were grouped into families with and without a religion and were analyzed qualitatively. Families with a religion (N = 28) chose answers such as ''Instrumental care'' such as music or a religious event, ''Freedom of choice of kinds for religious care,'' ''Staff involvement of religious care,'' ''Meeting with a pastoral care workers,'' and ''Burden of offering a different kind of personal religion.'' In contrast, families without a religion (N = 44) chose answers such as ''Instrumental care,'' ''Freedom of choice whether patients receive religious care or not,'' ''Spiritual care,'' ''Not being able to accept religious care,'' and ''Burden of thinking about a religion and nuisance.'' These findings suggest that Japanese bereaved families with a religion generally regard religious care positively and prefer care through their own religion, whereas some families without a religion require religious care but some do not prefer it.

Development and efficacy of music therapy techniques within palliative care.

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Clements-Cortés, Amy

2016-05-01

Music therapy is increasingly becoming an intervention used in palliative care settings around the globe. While the specialty of palliative care music therapy is relatively young having emerged in the late 1980s, there is a strong and growing body of evidence demonstrating its efficacy in assisting a variety of issues common at end-of-life. There are multiple music therapy techniques that are implemented with clients in palliative care and they can be categorized in four broad areas: receptive, creative, recreative and combined. These techniques will be presented with respect to their development by clinicians as supported by the descriptive and research literature. Information is also provided on the use of music therapy in facilitating the grieving and bereavement process. Copyright © 2015 Elsevier Ltd. All rights reserved.

The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring.

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Jones, Barbara L; Contro, Nancy; Koch, Kendra D

2014-02-01

Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill.

A comprehensive palliative care center implementation in S.B. Ulus State Hospital

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Ayla Kabalak

2012-06-01

Every people wants to best care and to die painless in their end-stage of life. This is a human right. Therefore, end-of-life care is considered an indicator of health quality all over the world. The ultimate goal of palliative care is to relieve the suffering of patients and their families by the comprehensive assessment and treatment of physical, psychosocial, and spiritual symptoms experienced by patients. After the patient\\s death, palliative care focuses primarily on bereavement of the family. T.C. Ministry of Health to find a solution of this important issue as a first step, the preparations for the establishment of palliative care centers and units, training of health personnel started. S.B. Ulus State Hospital as a team we have set out to open a comprehensive palliative care center. Our goal is to contribute on take place of palliative care organization in health system and to the spread across the country. [J Contemp Med 2012; 2(2.000: 122-126

Spiritual Distress in Bereavement: Evolution of a Research Program

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Laurie A. Burke

2014-11-01

Full Text Available Many mourners turn to their spiritual beliefs and traditions when confronted by the death of a loved one. However, prior studies have either focused primarily on the benefits of faith following loss or studied spiritual struggle outside the context of bereavement. Moreover, scales to measure bereavement-related crises of faith and interventions specifically designed for spiritually inclined, distressed grievers are virtually non-existent. Our program of research, which to date has consisted of working with Christian grievers and is outlined below, elucidates complicated spiritual grief (CSG—a spiritual crisis following the loss of a loved one. For example, our longitudinal examination of 46 African American homicide survivors established the relation between positive religious coping, CSG, and complicated grief (CG, to clarify whether religious coping more strongly predicted bereavement distress or vice versa, with a follow-up study that determined the relation between religious coping and posttraumatic stress disorder (PTSD and depression. We replicated and expanded these findings with a diverse sample of 150 grievers to explore the complex relation between CSG, CG, and meaning making in a comparison study of mourners who had experienced traumatic-versus natural death losses. In a companion study, we qualitatively analyzed 84 grievers’ narratives and interviewed a 5-member focus group to capture and learn from their firsthand experiences of spiritual distress. To close the gap in terms of CSG assessment, we also developed and validated the Inventory of Complicated Spiritual Grief (ICSG. Currently, our ongoing CSG investigation extends in several directions: first, to a sample of family members anticipating the loss of their hospice-eligible loved one in palliative care; and, second, to the development and testing of a writing-intensive intervention for newly bereaved, spiritually inclined grievers.

Moving toward quality palliative cancer care: parent and clinician perspectives on gaps between what matters and what is accessible.

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Kassam, Alisha; Skiadaresis, Julia; Habib, Sharifa; Alexander, Sarah; Wolfe, Joanne

2013-03-01

The National Consensus Project (NCP) published a set of standards for quality palliative care delivery. A key step before applying these guidelines to pediatric oncology is to evaluate how much families and clinicians value these standards. We aimed to determine which elements of palliative care are considered important according to bereaved parents and pediatric oncology clinicians and to determine accessibility of these elements. We administered questionnaires to 75 bereaved parents (response rate, 54%) and 48 pediatric oncology clinicians (response rate, 91%) at a large teaching hospital. Outcome measures included importance ratings and accessibility of core elements of palliative care delivery. Fifteen of 20 core elements were highly valued by both parents and clinicians (defined as > 60% of parents and clinicians reporting the item as important). Compared with clinicians, parents gave higher ratings to receiving cancer-directed therapy during the last month of life (P involvement of a spiritual mentor (P = .03). Of the valued elements, only three were accessible more than 60% of the time according to clinicians and parents. Valued elements least likely to be accessible included a direct admission policy to hospital, sibling support, and parent preparation for medical aspects surrounding death. Parents and clinicians highly value a majority of palliative care elements described in the NCP framework. Children with advanced cancer may not be receiving key elements of palliative care despite parents and clinicians recognizing them as important. Evaluation of barriers to provision of quality palliative care and strategies for overcoming them are critical.

Future of palliative medicine

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Sushma Bhatnagar

2015-01-01

Full Text Available A ′need-supply′ and ′requirement-distribution mismatch′ along with a continuingneed explosion are the biggest hurdles faced by palliative medicine today. It is the need of the hour to provide an unbiased, equitable and evidence-based palliative care to those in need irrespective of the diagnosis, prognosis, social and economic status or geographical location. Palliative care as a fundamental human right, ensuring provision throughout the illness spectrum, global as well as region-specific capacity building, uniform availability of essential drugs at an affordable price, a multidisciplinary team approachand caregiver-support are some of the achievable goals for the future. This supplanted with a strong political commitment, professional dedication and ′public-private partnerships′ are necessaryto tackle the existing hurdles and the exponentially increasing future need. For effectively going ahead it is of utmost importance to integrate palliative medicine into medical education, healthcare system and societal framework.

Approaches to capturing the financial cost of family care-giving within a palliative care context: a systematic review.

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Gardiner, Clare; Brereton, Louise; Frey, Rosemary; Wilkinson-Meyers, Laura; Gott, Merryn

2016-09-01

The economic burden faced by family caregivers of people at the end of life is well recognised. Financial burden has a significant impact on the provision of family care-giving in the community setting, but has seen limited research attention. A systematic review with realist review synthesis and thematic analysis was undertaken to identify literature relating to the financial costs and impact of family care-giving at the end of life. This paper reports findings relating to previously developed approaches which capture the financial costs and implications of caring for family members receiving palliative/end-of-life care. Seven electronic databases were searched from inception to April 2012, for original research studies relating to the financial impact of care-giving at the end of life. Studies were independently screened to identify those which met the study inclusion criteria, and the methodological quality of included studies was appraised using realist review criteria of relevance and rigour. A descriptive thematic approach was used to synthesise data. Twelve articles met the inclusion criteria for the review. Various approaches to capturing data on the financial costs of care-giving at the end of life were noted; however, no single tool was identified with the sole purpose of exploring these costs. The majority of approaches used structured questionnaires and were administered by personal interview, with most studies using longitudinal designs. Calculation of costs was most often based on recall by patients and family caregivers, in some studies combined with objective measures of resource use. While the studies in this review provide useful data on approaches to capturing costs of care-giving, more work is needed to develop methods which accurately and sensitively capture the financial costs of caring at the end of life. Methodological considerations include study design and method of administration, contextual and cultural relevance, and accuracy of cost

Parents bereaved by offspring suicide

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Bolton, James M; Au, Wendy; Leslie, William D

2013-01-01

OUTCOME MEASURES Mental and physical disorders, social factors, and treatment use. RESULTS Suicide bereavement was associated with an increased rate of depression (ARR, 2.14; 95% CI, 1.88-2.43), anxiety disorders (ARR, 1.41; 95% CI, 1.24-1.60), and marital breakup (ARR, 1.18; 95% CI, 1.13-1.23) in the 2...... years after the suicide of an offspring, as compared with the 2 years prior to the death. Suicide-bereaved and MVC-bereaved parents had very few differences on predeath to postdeath outcomes. Depression rate increases were greater for MVC-bereaved parents (19.9%) compared with suicide-bereaved parents...... (15.9%; P = .005), whereas suicide-bereaved parents had higher rate increases of hospitalization for mental illness (P = .049). Suicide-bereaved parents were more likely than their MVC-bereaved counterparts to have depression (ARR, 1.30; 95% CI, 1.06-1.61), physical disorders (ARR, 1.32; 95% CI, 1...

Can general practitioners create a successful palliative pathway for cancer patients?

DEFF Research Database (Denmark)

Neergaard, Mette Asbjørn; Olesen, Frede; Vedsted, Peter

  Background: Most terminal cancer patients and their relatives wish that the patient should be allowed to die at home. Palliative home care often involves general practitioners (GPs) and community nurses who become frontline workers in the patients' homes. GP home visits have been shown...... to 599 GPs of deceased cancer patients to obtain data on the GPs' involvement. Register data were collected on diagnosis, place of death and number of GP home visits. Questionnaires were sent to the closest relatives asking them to evaluate the palliative pathway. 153 cases were included and associations...... significant importance. Conclusion: Our study indicates that home death is positively associated with a higher likelihood of a positive evaluation of the palliative course among the bereaved relatives. There is a need for studies examining in more detail which primary care efforts are associated with a "good...

Poverty Reduction in India through Palliative Care: A Pilot Project.

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Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju

2017-01-01

EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or government pensions, and many

Hope as determinant for psychiatric morbidity in family caregivers of advanced cancer patients.

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Rumpold, T; Schur, S; Amering, M; Ebert-Vogel, A; Kirchheiner, K; Masel, E; Watzke, H; Schrank, B

2017-05-01

Home care of advanced cancer patients often has adverse effects on physical and mental health of family caregivers. Little is known about the long-term effects of continuous caregiving on mental health as compared with the effects of bereavement. The objectives of this study were to describe the course of psychiatric morbidity in family caregivers over time, to identify the impact of the patients' death on caregivers, and to explore possible predictor variables for psychiatric morbidity. This multi-institutional, prospective study included 80 family caregivers of 80 advanced cancer patients for baseline and 9 months follow-up assessment. Possible psychiatric disorders (ie, depression, anxiety, posttraumatic stress disorder, and alcohol abuse/dependence) as well as potentially predictive factors (ie, sociodemographic factors, burden, hope, and coping mechanisms) were assessed. Follow-up assessment was conducted on average 9.2 months (±2.9) after baseline assessment. Prevalence rates of anxiety and posttraumatic stress disorder decreased significantly over time, whereas depression and alcoholism remained stable. Bereavement was experienced by 53% of caregivers in the follow-up period. The patients' death had no influence on psychiatric morbidity at follow-up. Predictors for the development of a psychiatric disorder varied according to condition, with hope and emotion-oriented coping identified as important influences, especially for anxiety and depression. Family caregivers with certain psychiatric disorders might need targeted psychosocial support to ensure their mental well-being and prevent long-term disability. Supporting hope and functional coping strategies early after the patient's diagnosis might limit development and extent of psychiatric morbidity. Copyright © 2016 John Wiley & Sons, Ltd.

Randomized Controlled Trial of Family Therapy in Advanced Cancer Continued Into Bereavement.

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Kissane, David W; Zaider, Talia I; Li, Yuelin; Hichenberg, Shira; Schuler, Tammy; Lederberg, Marguerite; Lavelle, Lisa; Loeb, Rebecca; Del Gaudio, Francesca

2016-06-01

Systematic family-centered cancer care is needed. We conducted a randomized controlled trial of family therapy, delivered to families identified by screening to be at risk from dysfunctional relationships when one of their relatives has advanced cancer. Eligible patients with advanced cancer and their family members screened above the cut-off on the Family Relationships Index. After screening 1,488 patients or relatives at Memorial Sloan Kettering Cancer Center or three related community hospice programs, 620 patients (42%) were recruited, which represented 170 families. Families were stratified by three levels of family dysfunction (low communicating, low involvement, and high conflict) and randomly assigned to one of three arms: standard care or 6 or 10 sessions of a manualized family intervention. Primary outcomes were the Complicated Grief Inventory-Abbreviated (CGI) and Beck Depression Inventory-II (BDI-II). Generalized estimating equations allowed for clustered data in an intention-to-treat analysis. On the CGI, a significant treatment effect (Wald χ(2) = 6.88; df = 2; P = .032) and treatment by family-type interaction was found (Wald χ(2) = 20.64; df = 4; P families. Low-communicating families improved by 6 months of bereavement. In the standard care arm, 15.5% of the bereaved developed a prolonged grief disorder at 13 months of bereavement compared with 3.3% of those who received 10 sessions of intervention (Wald χ(2) = 8.31; df = 2; P =.048). No significant treatment effects were found on the BDI-II. Family-focused therapy delivered to high-risk families during palliative care and continued into bereavement reduced the severity of complicated grief and the development of prolonged grief disorder. © 2016 by American Society of Clinical Oncology.

The effects of community-wide dissemination of information on perceptions of palliative care, knowledge about opioids, and sense of security among cancer patients, their families, and the general public.

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Akiyama, Miki; Hirai, Kei; Takebayashi, Toru; Morita, Tatsuya; Miyashita, Mitsunori; Takeuchi, Ayano; Yamagishi, Akemi; Kinoshita, Hiroya; Shirahige, Yutaka; Eguchi, Kenji

2016-01-01

Prejudices against palliative care are a potential barrier to quality end-of-life care. There have been few large-scale community-wide interventions to distribute appropriate information about palliative care, and no studies have investigated their impact on cancer patients, their families, and the general public. Thus, we conducted a 3-year community intervention and evaluated the effects of distributing such information at the community level, and explored associations among levels of exposure, perceptions, knowledge, and the sense of security achieved. Over a period of 3 years, we provided flyers, booklets, posters, and public lectures about palliative care in four regions of Japan, and carried out pre- and post-intervention surveys with repeated cross-sectional samplings of cancer patients (pre 859, post 857), bereaved family members (1110, 1137), and the general public (3984, 1435). The levels of exposure to the provided information were measured by a multiple-choice questionnaire after intervention. Multiple logistic regression analyses were used to estimate multivariable-adjusted odds ratios (ORs) for perceptions of palliative care, knowledge about opioids, and sense of security among the exposure groups. Overall perceptions of palliative care, opioids, and receiving care at home improved significantly among the general public and families, but not among the patients at the community level. However, multiple regression revealed that patients of extensive exposure category had significantly more positive perceptions of palliative care to those of non-exposure category (p = 0.02). The sense of security regarding cancer care of all patients, family members, and the general public improved. Among others, the respondents who reported extensive exposure in the general public and family members scored significantly higher sense of security. Our findings indicate that providing palliative care information via small media and lectures in the community is

Hospital-based palliative care: A case for integrating care with cure

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Priya Darshini Kulkarni

2011-01-01

Full Text Available The reason that probably prompted Dame Cicely Saunders to launch the palliative care movement was the need to move away from the impersonal, technocratic approach to death that had become the norm in hospitals after the Second World War. Palliative care focuses on relieving the suffering of patients and families. Not limited to just management of pain, it includes comprehensive management of any symptom, which affects the quality of life. Care is optimized through early initiation and comprehensive implementation throughout the disease trajectory. Effective palliative care at the outset can help accelerate a positive clinical outcome. At the end of life, it can enhance the opportunity for the patient and family to achieve a sense of growth, resolve differences, and find a comfortable closure. It helps to reduce the suffering and fear associated with dying and prepares the family for bereavement.

Long-term psychosocial outcomes among bereaved siblings of children with cancer.

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Rosenberg, Abby R; Postier, Andrea; Osenga, Kaci; Kreicbergs, Ulrika; Neville, Bridget; Dussel, Veronica; Wolfe, Joanne

2015-01-01

The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings. To describe 1) the prevalence of risky health behaviors, psychological distress, and social support among bereaved siblings and 2) potentially modifiable factors associated with poor outcomes. Bereaved siblings were eligible for this dual-center, cross-sectional, survey-based study if they were 16 years or older and their parents had enrolled in one of three prior studies about caring for children with cancer at the end of life. Linear regression models identified associations between personal perspectives before, during, and after the family's cancer experience and outcomes (health behaviors, psychological distress, and social support). Fifty-eight siblings completed surveys (62% response rate). They were approximately 12 years bereaved, with a mean age of 26 years at the time of the survey (SD 7.8). Anxiety, depression, and illicit substance use increased during the year after their brother/sister's death but then returned to baseline. Siblings who reported dissatisfaction with communication, poor preparation for death, missed opportunities to say goodbye, and/or a perceived negative impact of the cancer experience on relationships tended to have higher distress and lower social support scores (P siblings reported that their loss still affected them; half stated that the experience impacted current educational and career goals. How siblings experience the death of a child with cancer may impact their long-term psychosocial well-being. Sibling-directed communication and concurrent supportive care during the cancer experience and the year after the sibling death may mitigate poor long-term outcomes. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Center to Advance Palliative Care palliative care clinical care and customer satisfaction metrics consensus recommendations.

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Weissman, David E; Morrison, R Sean; Meier, Diane E

2010-02-01

Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here.

Culturally Competent Palliative and Hospice Care Training for Ethnically Diverse Staff in Long-Term Care Facilities.

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Kataoka-Yahiro, Merle R; McFarlane, Sandra; Koijane, Jeannette; Li, Dongmei

2017-05-01

Between 2013 and 2030, older adults 65 years and older of racial/ethnic populations in the U.S. is projected to increase by 123% in comparison to the Whites (Non-Hispanics). To meet this demand, training of ethnically diverse health staff in long-term care facilities in palliative and hospice care is imperative. The purpose of this study was to evaluate a palliative and hospice care training of staff in two nursing homes in Hawaii - (a) to evaluate knowledge and confidence over three time periods, and (b) to compare staff and family caregiver satisfaction at end of program. The educational frameworks were based on cultural and communication theories. Fifty-two ethnically diverse staff, a majority being Asian (89%), participated in a 10-week module training and one 4 hour communication skills workshop. Staff evaluation included knowledge and confidence surveys, pre- and post-test knowledge tests, and FAMCARE-2 satisfaction instrument. There were nine Asian (89%) and Pacific Islander (11%) family caregivers who completed the FAMCARE-2 satisfaction instrument. The overall staff knowledge and confidence results were promising. The staff rated overall satisfaction of palliative care services lower than the family caregivers. Implications for future research, practice, and education with palliative and hospice care training of ethnically diverse nursing home staff is to include patient and family caregiver satisfaction of palliative and hospice care services, evaluation of effectiveness of cross-cultural communication theories in palliative and hospice care staff training, and support from administration for mentorship and development of these services in long term care facilities.

A region-based palliative care intervention trial using the mixed-method approach: Japan OPTIM study

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Morita Tatsuya

2012-01-01

Full Text Available Abstract Background Disseminating palliative care is a critical task throughout the world. Several outcome studies explored the effects of regional palliative care programs on a variety of end-points, and some qualitative studies investigated the process of developing community palliative care networks. These studies provide important insights into the potential benefits of regional palliative care programs, but the clinical implications are still limited, because: 1 many interventions included fundamental changes in the structure of the health care system, and, thus, the results would not be applicable for many regions where structural changes are difficult or unfeasible; 2 patient-oriented outcomes were not measured or explored only in a small number of populations, and interpretation of the results from a patient's view is difficult; and 3 no studies adopted a mixed-method approach using both quantitative and qualitative methodologies to interpret the complex phenomenon from multidimensional perspectives. Methods/designs This is a mixed-method regional intervention trial, consisting of a pre-post outcome study and qualitative process studies. The primary aim of the pre-post outcome study is to evaluate the change in the number of home deaths, use of specialized palliative care services, patient-reported quality of palliative care, and family-reported quality of palliative care after regional palliative care intervention. The secondary aim is to explore the changes in a variety of outcomes, including patients' quality of life, pain intensity, family care burden, and physicians' and nurses' knowledge, difficulties, and self-perceived practice. Outcome measurements used in this study include the Care Evaluation Scale, Good Death Inventory, Brief pain Inventory, Caregiving Consequence Inventory, Sense of Security Scale, Palliative Care Knowledge test, Palliative Care Difficulties Scale, and Palliative Care Self-reported Practice Scale. Study

Defining palliative care in cystic fibrosis: A Delphi study.

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Dellon, E P; Goggin, J; Chen, E; Sabadosa, K; Hempstead, S E; Faro, A; Homa, K

2018-05-01

The goal of palliative care is to improve quality of life for people with serious illness. We aimed to create a cystic fibrosis (CF)-specific definition of palliative care. A working group of 36 CF care providers, researchers, palliative care providers, quality improvement experts, individuals with CF, and CF caregivers completed a series of questionnaires to rate the value of each of 22 attributes of palliative care, rank top attributes to construct definitions of palliative care, and then rate proposed definitions. An average of 28 participants completed each of four questionnaires, with consistent distribution of stakeholder roles across questionnaires. Many identified overlaps in routine CF care and palliative care and highlighted the importance of a definition that feels relevant across the lifespan. Modified Delphi methodology was used to define palliative care in CF. The definition will be used as the foundation for development of CF-specific palliative care guidelines. Copyright © 2017 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

Meaning Making in Wartime Bereavement: Lessons Learned From Bereaved Parents and Siblings.

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Harrington, Christina

2017-12-01

Wartime deaths are traumatic and leave many grieving families in their wake. Yet, the unique, nuanced bereavement needs and experiences of those who remain are largely unknown. This Canadian, qualitative study examined the bereavement experiences of family of origin, bereaved during the mission to Afghanistan. The findings provide rich data on the predominant ways in which family members found and made meaning following the death and the ways in which military culture influenced the meanings made.

Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada.

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Yu, Mo; Guerriere, Denise N; Coyte, Peter C

2015-11-01

In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of

Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) - work package II: palliative care for pediatric patients.

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Ulrich, Lisa-R; Gruber, Dania; Hach, Michaela; Boesner, Stefan; Haasenritter, Joerg; Kuss, Katrin; Seipp, Hannah; Gerlach, Ferdinand M; Erler, Antje

2018-01-05

In 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care compared to EAPC standards. In Germany, pediatric palliative care patients can be referred to specialized outpatient palliative care (SOPC) services, which are known to enhance quality of life, e.g. by avoiding hospitalization. However, current regulations for the provision of SOPC in Germany do not account for the different circumstances and needs of children and their families compared to adult palliative care patients. The "Evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH)" study aims to perform a needs assessment for pediatric patients (children, adolescents and young adults) receiving SOPC. This paper presents the study protocol for this assessment (work package II). The study uses a sequential mixed-methods study design with a focus on qualitative research. Data collection from professional and family caregivers and, as far as possible, pediatric patients, will involve both a written questionnaire based on European recommendations for pediatric palliative care, and semi-structured interviews. Additionally, professional caregivers will take part in focus group discussions and participatory observations. Interviews and focus groups will be tape- or video-recorded, transcribed verbatim and analyzed in accordance with the principles of grounded theory (interviews) and content analysis (focus groups). A structured field note template will be used to record notes taken during the participatory observations. Statistical Package for Social Sciences (SPSS, version 22 or higher) will be used for descriptive statistical analyses. The qualitative data analyses will be software-assisted by MAXQDA (version 12 or higher). This study will provide important information on what matters

"Oh, yeah, I'm getting closer to god": spirituality and religiousness of family caregivers of cancer patients undergoing palliative care.

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Paiva, Bianca Sakamoto Ribeiro; Carvalho, André Lopes; Lucchetti, Giancarlo; Barroso, Eliane Marçon; Paiva, Carlos Eduardo

2015-08-01

Within the cancer palliative care setting, where both patients and family caregivers (FCs) undergo a transition from the end of curative treatment to palliative therapy, spirituality and religiousness (S/R) may be a strategy to help the patients and FCs better cope with the disease, in addition to exerting a positive impact on symptoms, particularly emotional symptoms. The present study aimed to understand how S/R influence FCs of cancer patients undergoing palliative care. This study was an exploratory and descriptive qualitative study. The qualitative approach to the data was based on Bardin's content analysis technique. The consolidated criteria for reporting qualitative research (COREQ-32) was used in the description of the results. Thirty FCs of individuals with advanced cancer undergoing palliative care were included. Analysis of the FCs' narratives indicated that the FCs considered that religiousness and faith in God or a Supreme Being provide them with the strength to cope with the suffering associated with the care of relatives with advanced cancer. Many FCs emphasized that talking about God was somehow comforting and made them feel at peace with themselves. Four categories were identified in the FCs' narratives: (1) increase in faith and closeness to God becomes stronger, (2) rethink life issues, (3) negative interference in the extrinsic religiosity, and (4) quest for religiousness to gain strength or support. A conceptual framework was developed. The results of the present study indicated that S/R are a coping strategy frequently used by FCs of individuals with advanced cancer. The perceptions of the FCs interviewed in the present study corresponded to the four distinct categories related to spirituality and religiousness.

Palliative care and neurology: time for a paradigm shift.

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Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi

2014-08-05

Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. © 2014 American Academy of Neurology.

Critically examining diversity in end-of-life family caregiving: implications for equitable caregiver support and Canada’s Compassionate Care Benefit

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Giesbrecht Melissa

2012-11-01

Full Text Available Abstract Introduction Family (i.e., unpaid caregiving has long been thought of as a ‘woman’s issue’, which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers’ experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB. Methods This analysis contributes to a utilization-focused evaluation of Canada’s CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued. Results Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers’ experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference. Conclusions We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced

Family focused grief therapy: The therapy of choice in palliative care

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Klikovac Tamara

2017-01-01

Full Text Available Palliative care refers to offering physical, psychosocial and spiritual care to patients who are suffering from life threatening diseases. It also includes providing psychological support for family members and other close relations during the period of illness (anticipatory grief and in the period of bereavement and mourning after the patient's death. The choice of therapy during the process of bereavement and mourning is Family Focused Grief Therapy (FFGT. FFGT is a brief, focused and time-limited psychotherapeutic model of intervention belonging to family psychotherapy which is specified for the families that face a life threatening disease of a family member. FFGT, with some modifications, can be applied in work with the families who are facing a terminal illness of younger family members - a child or an adolescent. FFGT typically comprises of 7 to 9 sessions lasting for 90 minutes, which are arranged flexibly across 9 to 18 months, depending on the needs of each family individually. It is important to emphasize that the frequency and number of sessions in each phase depend on the specific features and needs of each particular family. The intervention aim of FFGT is to prevent the complications of bereavement by enhancing the functioning of the family, through exploration of its cohesion, communications (of thoughts and feelings, and handling of conflict. The story of illness and the related grief is shared in the process. The creator of this model is Dr David Kissane, a psychiatrist and a family psychotherapist from Melbourne, Australia, who also worked at the Memorial Sloan Kettering Cancer Centre in New York. The main aims of this article are, on the one hand, to introduce this very useful model of the family therapy to the professional community in Serbia and, on the other, to introduce a conceptual and practical frame of palliative care.

A qualitative study of recently bereaved people's beliefs about death: implications for bereavement care.

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Draper, Peter; Holloway, Margaret; Adamson, Susan

2014-05-01

To investigate the beliefs of recently bereaved people about death and to explore the implications of these beliefs for bereavement care. Little is known about recently bereaved people's beliefs about death, although there is evidence that these beliefs may have an impact on health. The funeral provides an opportunity for bereaved people to reflect on their beliefs about death. A qualitative approach. This paper describes one aspect of an interdisciplinary study of the spirituality of contemporary funerals. We obtained access to 46 funerals through funeral directors and other contacts, and interviewed principal mourners to explore their beliefs. Interviews were recorded, transcribed verbatim and analysed thematically. Three themes emerged that reflected the beliefs and experiences of bereaved people. The first theme describes people's understanding of death in terms of five positions: religious, dualist, eco-spiritualist, materialist and death-as-transition. The second theme addresses a range of views about the possibility of life after death: resurrection, reuniting and reincarnation. The third theme describes ways in which people felt that their relationship with the deceased person continues after death: continuity as sense of presence and continuity as memory, legacy and love. Some people were reluctant to express a firm view about death. People express a spectrum of beliefs about death. Their beliefs are infrequently linked to formal religious or spiritual perspectives but seem to have an important role in coping with bereavement. This is a unique study illustrating the complexity of bereaved people's beliefs about death. The study provides a research-based framework within which to understand contemporary beliefs about death, and contributes to our understanding of how health professionals can support recently bereaved people. © 2013 John Wiley & Sons Ltd.

Bereavement care interventions: a systematic review

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Feudtner Chris

2004-07-01

Full Text Available Abstract Background Despite abundant bereavement care options, consensus is lacking regarding optimal care for bereaved persons. Methods We conducted a systematic review, searching MEDLINE, PsychINFO, CINAHL, EBMR, and other databases using the terms (bereaved or bereavement and (grief combined with (intervention or support or counselling or therapy and (controlled or trial or design. We also searched citations in published reports for additional pertinent studies. Eligible studies had to evaluate whether the treatment of bereaved individuals reduced bereavement-related symptoms. Data from the studies was abstracted independently by two reviewers. Results 74 eligible studies evaluated diverse treatments designed to ameliorate a variety of outcomes associated with bereavement. Among studies utilizing a structured therapeutic relationship, eight featured pharmacotherapy (4 included an untreated control group, 39 featured support groups or counselling (23 included a control group, and 25 studies featured cognitive-behavioural, psychodynamic, psychoanalytical, or interpersonal therapies (17 included a control group. Seven studies employed systems-oriented interventions (all had control groups. Other than efficacy for pharmacological treatment of bereavement-related depression, we could identify no consistent pattern of treatment benefit among the other forms of interventions. Conclusions Due to a paucity of reports on controlled clinical trails, no rigorous evidence-based recommendation regarding the treatment of bereaved persons is currently possible except for the pharmacologic treatment of depression. We postulate the following five factors as impeding scientific progress regarding bereavement care interventions: 1 excessive theoretical heterogeneity, 2 stultifying between-study variation, 3 inadequate reporting of intervention procedures, 4 few published replication studies, and 5 methodological flaws of study design.

Holocaust memory reconstruction among bereaved parents.

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Cohen-Louck, Keren; Saka, Yael

2017-02-01

Many studies have examined the trauma bereaved parents experience. The current study focuses on the role that the Holocaust's memory plays in the bereavement experience of parents who have lost a child in a terrorist attack in Israel. Forty bereaved parents were interviewed, using semistructured in-depth interviews. Bereaved parents related to the Holocaust memory as a meaningful experience in their private bereavement. The parents expressed dialectic feelings concerning their loss, personal victimization on the one hand and personal strength, and growth on the other hand. It seems that memory reconstruction of the Holocaust can be used as a coping resource.

Communicatively Constructing the Bright and Dark Sides of Hope: Family Caregivers’ Experiences during End of Life Cancer Care

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Jody Koenig Kellas

2017-05-01

Full Text Available (1 Background: The communication of hope is complicated, particularly for family caregivers in the context of cancer who struggle to maintain hope for themselves and their loved ones in the face of terminality. In order to understand these complexities, the current study examines the bright and dark sides of how hope is communicated across the cancer journey from the vantage point of bereaved family caregivers; (2 Methods: We analyzed interviews with bereaved family caregivers using qualitative thematic and case oriented strategies to identify patterns in the positive and negative lived experiences when communicating about hope at the end of life; (3 Results: Two overarching patterns of hope emerged. Those who experienced hope as particularized (focused on cure cited communication about false hope, performing (faking it, and avoidance. Those who transitioned from particularized to generalized hope (hope for a good death reported acceptance, the communication of hope as social support, prioritizing family, and balancing hope and honesty; (4 Conclusion: Family caregivers face myriad complexities in managing the bright and dark sides of hope. Interventions should encourage concurrent oncological and palliative care, increased perspective-taking among family members, and encourage the transition from particularized to generalized hope.

Communicatively Constructing the Bright and Dark Sides of Hope: Family Caregivers’ Experiences during End of Life Cancer Care

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Koenig Kellas, Jody; Castle, Katherine M.; Johnson, Alexis; Cohen, Marlene Z.

2017-01-01

(1) Background: The communication of hope is complicated, particularly for family caregivers in the context of cancer who struggle to maintain hope for themselves and their loved ones in the face of terminality. In order to understand these complexities, the current study examines the bright and dark sides of how hope is communicated across the cancer journey from the vantage point of bereaved family caregivers; (2) Methods: We analyzed interviews with bereaved family caregivers using qualitative thematic and case oriented strategies to identify patterns in the positive and negative lived experiences when communicating about hope at the end of life; (3) Results: Two overarching patterns of hope emerged. Those who experienced hope as particularized (focused on cure) cited communication about false hope, performing (faking it), and avoidance. Those who transitioned from particularized to generalized hope (hope for a good death) reported acceptance, the communication of hope as social support, prioritizing family, and balancing hope and honesty; (4) Conclusion: Family caregivers face myriad complexities in managing the bright and dark sides of hope. Interventions should encourage concurrent oncological and palliative care, increased perspective-taking among family members, and encourage the transition from particularized to generalized hope. PMID:28505118

An exploratory study of drawings by bereaved children.

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Forrest, M; Thomas, G V

1991-11-01

Bereaved and non-bereaved children made drawings of a person, themselves, their family, and a topic of their choice; the drawings were then analysed to investigate whether the experience of bereavement was expressed in drawing in any reliable way. Bereaved children were no more likely than non-bereaved children to include indicators of emotional disturbance in their human figure drawings. Bereaved children, however, were reliably more likely than non-bereaved children to include themselves in a drawing of their family.

Immigrants Coping with Transnational Deaths and Bereavement: The Influence of Migratory Loss and Anticipatory Grief.

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Nesteruk, Olena

2017-12-14

This study examines immigrants' experiences of bereavement and coping with the deaths of family members in a transnational context. Data were collected through in-depth personal interviews with middle-aged and older immigrants from different countries of origin, who have been living in the United States for a majority of their adult lives. Thematic analysis of participants' narratives showed that immigrants' geographic distance from family complicated caregiving circumstances and rituals surrounding burial, and impacted the grieving process. At the same time, this distance also served as an emotional barrier and provided protection from prolonged grief. Immigrants' U.S.-based family and work responsibilities served as buffers from prolonged grief. Over time, immigrants became Americanized in their attitudes toward coping with death and favored a fast return to productive activities. Finally, immigrants' experience of migratory loss and anticipatory grief early in immigration, along with their personal growth and resilience developed over time, impacted their bereavement experiences later in life. Considering the limitations and the exploratory nature of the present study, further research is needed to investigate the specifics of coping with loss and bereavement among immigrants. © 2017 Family Process Institute.

Factors Associated with Attitude and Knowledge Toward Hospice Palliative Care Among Medical Caregivers

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Shih-Yi Lee

2015-06-01

Conclusion: Life and work experience improve the accuracy of medical staff in providing hospice palliative care. A culture-based, case-oriented continuing education program and a timely revision of the Hospice Palliative Care Article are recommended to increase the consistency between the principle and the practice of hospice palliative care.

Predictors of home death of home palliative cancer care patients: a cross-sectional nationwide survey.

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Fukui, Sakiko; Fujita, Junko; Tsujimura, Mayuko; Sumikawa, Yuka; Hayashi, Yayoi

2011-11-01

To identify factors influencing the place of death among home palliative cancer care patients, focusing on the role of nurses in terms of pre- and post-discharge from hospital to home care settings. A cross-sectional nationwide questionnaire survey was conducted at 1000 randomly selected homecare agencies in Japan. The questionnaires were completed by primary community nurses of home palliative patients just after their discharge. A total of 568 responses were analyzed (effective response rate, 69%). Multivariate logistic regression analysis revealed the following independent factors of place of death among those patients: desire for home death at referral by both patient and family caregiver; caregiver relationship to patient as daughter or daughter-in-law; totally bedridden functional status of patient; patient not suffering from depression and/or anxiety at referral; patients and caregivers duly informed about the dying process/death in detail, as well as instructed by community nurses about pain management and how to treat/prevent bedsores in home care settings. This study demonstrated the importance of both the hospital and community nurses' role in increasing the patients' chance of dying at home. Hospital nurses should support early transfer to home palliative care according to their assessment of the desire of patient/family caregiver for home death, the patients' clinical status, and caregivers' ability to provide patient care at home. Community nurses should inform patients/family caregiver in detail about the dying process/death just after discharge, relieve patient pain, treat/prevent bedsores, and instruct family caregivers on their symptom control. Crown Copyright © 2011. Published by Elsevier Ltd. All rights reserved.

Protocol: Evaluating the impact of a nation-wide train-the-trainer educational initiative to enhance the quality of palliative care for children with cancer.

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Widger, Kimberley; Friedrichsdorf, Stefan; Wolfe, Joanne; Liben, Stephen; Pole, Jason D; Bouffet, Eric; Greenberg, Mark; Husain, Amna; Siden, Harold; Whitlock, James A; Rapoport, Adam

2016-01-27

There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a 'Train-the-Trainer' model. In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, 'Master Facilitators' will train 'Regional Teams' affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to 'End-Users' in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams. Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of

Mediators between bereavement and somatic symptoms

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Konkolÿ Thege Barna

2012-06-01

Full Text Available Abstract Background In our research we examined the frequency of somatic symptoms among bereaved (N = 185 and non-bereaved men and women in a national representative sample (N = 4041 and investigated the possible mediating factors between bereavement status and somatic symptoms. Methods Somatic symptoms were measured by the Patient Health Questionnaire (PHQ-15, anxiety with a four-point anxiety rating scale, and depression with a nine-item shortened version of the Beck Depression Inventory. Results Among the bereaved, somatic symptoms proved to be significantly more frequent in both genders when compared to the non-bereaved, as did anxiety and depression. On the multivariate level, the results show that both anxiety and depression proved to be a mediator between somatic symptoms and bereavement. The effect sizes indicated that for both genders, anxiety was a stronger predictor of somatic symptoms than depression. Conclusions The results of our research indicate that somatic symptoms accompanying bereavement are not direct consequences of this state but they can be traced back to the associated anxiety and depression. These results draw attention to the need to recognize anxiety and depression looming in the background of somatic complaints in bereavement and to the importance of the dissemination of related information.

[Are oppressive dreams indicators in bereavement?].

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Purebl, György; Pilling, János; Konkolÿ, Thege Barna; Bódizs, Róbert; Kopp, Mária

2012-07-30

It is widely believed that oppressive dreams are frequent in bereavement--despite the lack of scientific investigations of the subject. The aims of our study were the analysis of dream quality as well as the correlates of oppressive dreams in bereavement. Participants with (N = 473) and without bereavement were compared upon the database of a national representative study (Hungarostudy Epidemiological Panel Survey 2006, N = 4329). Dream contents were assessed with the Dream Quality Questionnaire (DQQ). Depressive symptoms (BDI-S) and the presence anxiety were also investigated. Oppressive dreams occurred significantly higher frequency in the first year of bereavement (men: F = 17.525, p dreams were significantly associated with anxiety (F = 37.089, p dreams are significantly more frequent in the first year of bereavement, and may act as indicators of bereavement-linked mental health consequences like depression and anxiety. These are often masked by the symptoms of grief and therefore remain untreated. Our preliminary results could be a starting point for the development of further research aiming to clarify the relationship amongst dream contents, anxiety, and depression in bereavement.

PTSD in older bereaved people

DEFF Research Database (Denmark)

O'Connor, Maja

2010-01-01

  Late life bereavement has been associated with psychological problems, mainly depression. A few studies indicated that Posttraumatic Stress Disorder (PTSD) was an important issue to investigate in late life bereavement reactions. This study aimed to assess the prevalence of PTSD in recently...... bereaved elderly people compared to married controls and to investigate whether the loss of a spouse in old age, in contrast with earlier assumptions, could lead to PTSD. Two hundred and ninety six Danish elderly bereaved people (mean age 73 years, 113 males) were chosen from national registers and were...... subsequently assessed two months post-bereavement. They were compared with a control group of 276 married elderly people. The prevalence of PTSD and depression were measured through a self-report questionnaire. Results showed that 16% of the bereaved and 4% of the control group had a PTSD diagnosis (ES=.35...

Why we need more poetry in palliative care.

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Davies, Elizabeth A

2018-03-23

Although many well-known poems consider illness, loss and bereavement, medicine tends to view poetry more as an extracurricular than as a mainstream pursuit. Within palliative care, however, there has been a long-standing interest in how poetry may help patients and health professionals find meaning, solace and enjoyment. The objective of this paper is to identify the different ways in which poetry has been used in palliative care and reflect on their further potential for education, practice and research. A narrative review approach was used, drawing on searches of the academic literature through Medline and on professional, policy and poetry websites to identify themes for using poetry in palliative care. I identified four themes for using poetry in palliative care. These concerned (1) leadership, (2) developing organisational culture, (3) the training of health professionals and (4) the support of people with serious illness or nearing the end of life. The academic literature was mostly made up of practitioner perspectives, case examples or conceptual pieces on poetry therapy. Patients' accounts were rare but suggested poetry can help some people express powerful thoughts and emotions, create something new and feel part of a community. Poetry is one way in which many people, including patients and palliative care professionals, may seek meaning from and make sense of serious illnesses and losses towards the end of life. It may have untapped potential for developing person-centred organisations, training health professionals, supporting patients and for promoting public engagement in palliative care. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

[For the betterment of home palliative care].

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Midorikawa, Yasuhiko; Iiduka, Masashi

2010-12-01

The problems we have identified to overcome for a betterment of home palliative care were as follows:(1) Staffs' low level of knowledge and a lack of interest in home care, (2) Lack of cooperation between hospital and clinic, (3) Hard to keep the medical and caregiver staffs employed in the home care settings and a technical training is behind, (4) Insufficient cooperative networks for elderly care and welfare in the region, and (5) Misunderstanding of home palliative care by patient, family and people in the region. It is important to solve these problems one by one for a betterment of home palliative care. In this paper, we reported these problems through actual activities of our hospital and Iwaki city, and we propose to deal with them.

Hospice and palliative social workers' experiences with clients at risk of suicide.

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Washington, Karla T; Albright, David L; Parker Oliver, Debra; Gage, L Ashley; Lewis, Alexandria; Mooney, Megan J

2016-12-01

We sought to determine the frequency with which hospice and palliative social workers encounter patients, family caregivers, and other clients at risk of suicide, and to discover the extent to which hospice and palliative social workers feel prepared to address issues related to suicide in their professional practice. We conducted a cross-sectional survey of hospice and palliative social workers, recruiting a convenience sample of volunteer respondents through advertisements at professional conferences and listservs, and via social media accounts associated with national organizations, state hospice and palliative care associations, and individual healthcare professionals. Most respondents reported having worked with patients, family caregivers, or other clients who had exhibited warning signs of suicide during the previous year. Fewer respondents indicated that they had worked with patients and family members who had attempted or died by suicide. While the majority of respondents believed they possessed sufficient knowledge and skills to intervene effectively with individuals at risk of suicide, they indicated that additional education on this topic would be valuable for their professional practice. These study results suggest that suicide-related competencies are important in the practice of hospice and palliative social work. Future education and training efforts should include skill development in addition to knowledge building.

Internet Forums for Suicide Bereavement.

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Bailey, Eleanor; Krysinska, Karolina; O'Dea, Bridianne; Robinson, Jo

2017-11-01

Bereavement by suicide is associated with a number of consequences including poor mental health outcomes and increased suicide risk. Despite this, the bereaved by suicide may be reluctant to seek help from friends, family, and professionals. Internet forums and social networking sites are a popular avenue of support for the bereaved, but to date there is a lack of research into their use and efficacy. To survey users of suicide bereavement Internet forums and Facebook groups regarding their help-seeking behaviors, use of forums, and perceived benefits and limitations of such use. This study employed a cross-sectional design in which users of suicide bereavement Internet forums and Facebook groups completed an anonymous online survey. Participants were 222 users of suicide bereavement Internet forums. Most participants (93.2%) had sought face-to-face help from sources other than Internet forums, but were more likely to seek help in the near future from informal rather than formal sources. Forums were perceived as highly beneficial and there were few limitations. The generalizability of these results to other internet forums may be limited. Additionally, we were not able to examine differences between forums in terms of quality or user-reported efficacy. Finally, the data reflects the subjective views of forum users, which may differ from the views of moderators or experts. Internet forums, including Facebook groups, appear to be a useful adjunct to face-to-face help-seeking for supporting those who have been bereaved by suicide.

The Indirect Effect of Positive Parenting on the Relationship Between Parent and Sibling Bereavement Outcomes After the Death of a Child.

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Morris, Adam T; Gabert-Quillen, Crystal; Friebert, Sarah; Carst, Nancy; Delahanty, Douglas L

2016-01-01

Families are referred to pediatric palliative care (PPC) programs when a child is diagnosed with a medical condition associated with less than a full life expectancy. When a child dies, PPC programs typically offer a range of bereavement interventions to these families, often focusing on parents. Currently, it is unclear which factors increase the likelihood that bereaved siblings will experience negative outcomes, limiting the development of empirically supported interventions that can be delivered in PPC programs. The present study explored the relationship between parents' and surviving sibling's mental health symptoms (i.e., post-traumatic stress disorder [PTSD], prolonged grief disorder (PGD), and depression symptoms) after a child's death. Additionally, the extent to which parent functioning indirectly impacted sibling functioning through parenting behaviors (i.e., positive parenting and parent involvement) was also examined, with a specific focus on differences based on parent gender. Sixty bereaved parents and siblings (aged 8-18) who enrolled in a PPC program from 2008 to 2013 completed measures of PTSD, PGD, and depression related to the loss of a child/sibling. Siblings also completed a measure of general parenting behaviors. Maternal, but not paternal, symptoms of PTSD and PGD were directly associated with sibling outcomes. Paternal symptoms were associated with sibling symptoms indirectly, through parenting behaviors (i.e., via decreasing positive parenting). These results underscore the importance of examining both maternal and paternal influences after the death of a child, demonstrate differential impact of maternal vs. paternal symptoms on siblings, and stress the importance of addressing postloss symptoms from a family systems perspective. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Interventions geared towards strengthening the health system of Namibia through the integration of palliative care.

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Freeman, Rachel; Luyirika, Emmanuel Bk; Namisango, Eve; Kiyange, Fatia

2016-01-01

The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation's public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation.

Palliative Care in Huntington Disease: Personal Reflections and a Review of the Literature

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Christopher G. Tarolli

2017-04-01

Full Text Available Background Huntington disease is a fatal, autosomal dominant, neurodegenerative disorder manifest by the triad of a movement disorder, behavioral disturbances, and dementia. At present, no curative or disease modifying therapies exist for the condition and current treatments are symptomatic. Palliative care is an approach to care that focuses on symptom relief, patient and caregiver support, and end of life care. There is increasing evidence of the benefit of palliative care throughout the course of neurodegenerative conditions including Parkinson disease and amyotrophic lateral sclerosis. However, beyond its application at the end of life, little is known about the role of palliative care in Huntington disease.Methods In this article, we discuss what is known about palliative care in Huntington disease, specifically related to early disease burden, caregiver burnout, advance care planning, and end of life care.Results We provide a review of the current literature and discuss our own care practices.Discussion We conclude by discussing questions that remain unanswered and positing ideas for future work in the field.

Aligning guidelines and medical practice: Literature review on pediatric palliative care guidelines.

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De Clercq, Eva; Rost, Michael; Pacurari, Nadia; Elger, Bernice S; Wangmo, Tenzin

2017-08-01

Palliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains problematic. This literature review aims to identify barriers and recommendations for proper implementation of palliative care for children through the looking glass of PPC guidelines. To identify studies on PPC guidelines, five databases were searched systematically between 1960 and 2015: Scopus, PubMed, PsycINFO, the Web of Science, and CINAHL. No restrictions were placed on the type of methodology employed in the studies. Concerning barriers, most of the papers focused on gaps within medical practice and the lack of evidence-based research. Common recommendations therefore included: training and education of healthcare staff, formation of a multidisciplinary PPC team, research on the benefits of PPC, and raising awareness about PPC. A small number of publications reported on the absence of clear guidance in PPC documents regarding bereavement care, as well as on the difficulties and challenges involved in multidisciplinary care teams. Our results indicate that a critical assessment of both the research guidelines and medical practice is required in order to promote timely implementation of PPC for pediatric patients.

Validation of a model of family caregiver communication types and related caregiver outcomes.

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Wittenberg, Elaine; Kravits, Kate; Goldsmith, Joy; Ferrell, Betty; Fujinami, Rebecca

2017-02-01

Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types-Manager, Carrier, Partner, Lone-each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test

Voices that want to be heard: Using bereaved Danish students suggestions to update school bereavement response plans.

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Lytje, Martin

2018-04-01

This study explored how Danish students experienced returning to school following parental bereavement. Eighteen focus group interviews were conducted with 39 participants aged 9 to 17. All participants had experienced the loss of a primary caregiver. Data collection was divided into two phases. In Phase I, 22 participants from four grief groups were interviewed 4 times over the course of a year. During Phase II, confirmatory focus groups were undertaken with the 17 participants. This article explores the findings related to ideas and suggestions made by the students about how the Danish school response could be improved to better meet their needs. The presentation of data is divided into seven themes, which are: Desired school response; Desired support from teachers; Desired boundaries between students and teachers; Desired collaboration; Desired support from peers; Desired rules and structure, and; Desires related to gifts and rituals. Study findings indicate that most students want to be included and have a say when the school plans how to respond to their loss. Students further highlight a need for teacher support when having to reconnect with the class; a need for set rules in relation to leaving the class when feeling sad, and; a need for schools to see the loss as a life-changing event, and grief as something that does not simply disappear after a few months. The article concludes by discussing the ways in which the recommendations provided by the participants can be incorporated into a modern revision of Danish school bereavement response plans.

Grief after patient death: direct care staff in nursing homes and homecare.

Science.gov (United States)

Boerner, Kathrin; Burack, Orah R; Jopp, Daniela S; Mock, Steven E

2015-02-01

Patient death is common in long-term care (LTC). Yet, little attention has been paid to how direct care staff members, who provide the bulk of daily LTC, experience patient death and to what extent they are prepared for this experience. To 1) determine how grief symptoms typically reported by bereaved family caregivers are experienced among direct care staff, 2) explore how prepared the staff members were for the death of their patients, and 3) identify characteristics associated with their grief. This was a cross-sectional study of direct care staff experiencing recent patient death. Participants were 140 certified nursing assistants and 80 homecare workers. Standardized assessments and structured questions addressed staff (e.g., preparedness for death), institutional (e.g., support availability), and patient/relational factors (e.g., relationship quality). Data analyses included bivariate group comparisons and hierarchical regression. Grief reactions of staff reflected many of the core grief symptoms reported by bereaved family caregivers in a large-scale caregiving study. Feelings of being "not at all prepared" for the death and struggling with "acceptance of death" were prevalent among the staff. Grief was more intense when staff-patient relationships were closer, care was provided for longer, and staff felt emotionally unprepared for the death. Grief symptoms like those experienced by family caregivers are common among direct care workers after patient death. Increasing preparedness for this experience via better training and support is likely to improve the occupational experience of direct care workers and ultimately allow them to provide better palliative care in nursing homes and homecare. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients.

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Yoon, Seok-Joon; Kim, Jong-Sung; Jung, Jin-Gyu; Kim, Sung-Soo; Kim, Samyong

2014-05-01

Higher caregiver burden is associated with poor quality of life among family caregivers. However, in Korea, very few studies have examined factors associated with caregiver burden. The present study investigated factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients, particularly modifiable factors as a potential target of intervention strategies. A cross-sectional study using self-administered questionnaires was performed. Sixty-four family caregivers of terminally ill cancer patients who were admitted to the hospice-palliative care unit of a university hospital in South Korea were included. To identify caregiver burden, the Caregiver Reaction Assessment scale (CRA) was used in this study. Time spent in providing care per day, number of visits per week from other family members, family functioning, and a positive subscale, self-esteem, of the CRA were deemed as modifiable factors. Other sociodemographic, caregiving characteristics of the subjects were non-modifiable factors. Longer time spent providing care per day, fewer weekly visits from other family members, poor family functioning, and low self-esteem were considered as modifiable factors associated with caregiver burden. Low monthly income and the spouse being the family caregiver were non-modifiable factors. Our study has practical significance in that it identifies modifiable factors that can be used to devise intervention strategies. Developing and applying such intervention strategies for alleviating the factors associated with high caregiver burden could be important for improving the quality of life of both patients and their families.

Feasibility of a rural palliative supportive service.

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Pesut, B; Hooper, B P; Robinson, C A; Bottorff, J L; Sawatzky, R; Dalhuisen, M

2015-01-01

Healthcare models for the delivery of palliative care to rural populations encounter common challenges: service gaps, the cost of the service in relation to the population, sustainability, and difficulty in demonstrating improvements in outcomes. Although it is widely agreed that a community capacity-building approach to rural palliative care is essential, how that approach can be achieved, evaluated and sustained remains in question. The purpose of this community-based research project is to test the feasibility and identify potential outcomes of implementing a rural palliative supportive service (RPaSS) for older adults living with life-limiting chronic illness and their family caregiver in the community. This paper reports on the feasibility aspects of the study. RPaSS is being conducted in two co-located rural communities with populations of approximately 10 000 and no specialized palliative services. Participants living with life-limiting chronic illness and their family caregivers are visited bi-weekly in the home by a nurse coordinator who facilitates symptom management, teaching, referrals, psychosocial and spiritual support, advance care planning, community support for practical tasks, and telephone-based support for individuals who must commute outside of the rural community for care. Mixed-method collection strategies are used to collect data on visit patterns; healthcare utilization; family caregiver needs; and participant needs, functional performance and quality of life. A community-based advisory committee worked with the investigative team over a 1-year period to plan RPaSS, negotiating the best fit between research methods and the needs of the community. Recruitment took longer than anticipated with service capacity being reached at 8 months. Estimated service capacity of one nurse coordinator, based on bi-weekly visits, is 25 participants and their family caregivers. A total of 393 in-person visits and 53 telephone visits were conducted between

Parents' mental health after the birth of an extremely preterm child: a comparison between bereaved and non-bereaved parents.

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Jenewein, J; Moergeli, H; Fauchère, J-C; Bucher, H U; Kraemer, B; Wittmann, L; Schnyder, U; Büchi, S

2008-03-01

To assess the impact of extremely preterm birth (24-26 weeks of gestation) on the mental health of parents two to six years after delivery, and to examine potential differences in post-traumatic growth between parents whose newborn infant died and those whose child survived. A total of 54 parents who had lost their newborn and 38 parents whose preterm child survived were assessed by questionnaires with regard to depression and anxiety (HADS) and post-traumatic growth (PTGI). Neither group of parents had clinically relevant levels of depression and anxiety. Mothers showed higher levels of anxiety than fathers. Bereaved parents with no other, living child reported higher levels of depression than bereaved parents with one or more children. Mothers reported higher post-traumatic growth compared to fathers. In particular, bereaved mothers experienced the value and quality of their close social relationships more positively compared to the non-bereaved parents. In the long term, bereaved and non-bereaved parents cope reasonably well with an extremely preterm birth of a child. Post-traumatic growth appears to be positively related to bereavement, particularly in mothers.

What does the informal caregiver of a terminally ill cancer patient need? A study from a cancer centre

Directory of Open Access Journals (Sweden)

Anjum S Khan Joad

2011-01-01

Conclusions: informal caregivers provide most of the nursing and psychological support to the patient. However, palliative care services need to recognize that the caregiver too may need psychological and technical support.

Attitudes of palliative care clinical staff toward prolonged grief disorder diagnosis and grief interventions.

Science.gov (United States)

Davis, Esther L; Deane, Frank P; Barclay, Gregory D; Bourne, Joan; Connolly, Vivienne

2017-07-03

The provision of psychological support to caregivers is an important part of the role of the clinical staff working in palliative care. Staff knowledge and attitudes may determine their openness to referring caregivers to a psychological intervention. We recently developed a self-help intervention for grief and psychological distress among caregivers and were interested in exploring the extent to which staff knowledge and attitudes might affect future implementation. The aims of our study were to: (1) examine the acceptability of self-help psychological intervention for caregivers among palliative care clinical staff; (2) examine potential attitudinal barriers toward prolonged grief disorder (PGD) as a diagnosis and interventions for grief; and (3) bolster staff confidence in skills and knowledge in identifying and managing caregiver psychological distress. An anonymous survey was distributed among clinical staff at two inpatient units and two community health services that assessed the acceptability of self-help interventions for caregivers, attitudes about PGD diagnosis and grief intervention, and staff confidence in skills and knowledge in assessing caregiver psychological distress. Overall, clinical staff were positively oriented toward self-help for caregivers and intervention for grief. They were also basically confident in their skills and knowledge. While it was positive PGD attitudes that were associated with acceptability of self-help for caregivers, it was both positive and negative PGD attitudes that were associated more specifically with a willingness to refer caregivers to such an intervention. Our findings are useful in highlighting the issues to be considered in the implementation of a self-help intervention within the healthcare service. Clinical staff seemed positively oriented toward engaging with a psychological intervention for caregivers and likely to act as key allies in implementation.

Bereavement

Science.gov (United States)

... as a mental, physical, social or emotional reaction. Mental reactions can include anger, guilt, anxiety, sadness and despair. Physical reactions can include sleeping problems, changes in appetite, physical problems or illness. How long bereavement lasts can depend on how ...

Bereavement in early life and later childhood overweight

DEFF Research Database (Denmark)

Li, Jiong; Olsen, Jørn; Vestergaard, Mogens

2012-01-01

indicator, and subsequent risk of overweight in school-aged children. Methods: We followed 46,401 singletons born in Denmark who underwent annual health examinations at 7-13 years of age in school of Copenhagen. A total of 492 children experienced bereavement by death of a parent during the first 6 years...... of life. We compared BMI levels, changes in BMI, and the prevalence of overweight at 7-13 years of age between bereaved and non-bereaved children. Results: Between bereaved children and non-bereaved children, there were no differences in average BMI levels at any age or changes in BMI at 7-13 years of age....... Bereavement during the first 6 years of life was not associated with an increased risk of overweight at 7-13 years of age. Conclusion: This study did not support that stress induced by bereavement during the first 6 years of life has significant influence on overweight in later childhood. Copyright © 2012 S...

Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study

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Koffman Jonathan

2010-08-01

Full Text Available Abstract Background Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients. Methods/Design Mortality followback survey (with a nested case-control study of home vs. hospital deaths conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death. Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified. Discussion Collecting data on end

Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer.

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Wiener, Lori; Weaver, Meaghann Shaw; Bell, Cynthia J; Sansom-Daly, Ursula M

2015-01-09

Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYA's quality of life as end of life nears.

The importance of family caregiving to achieving palliative care at home: a case report of end-of-life breast cancer in an area struck by the 2011 Fukushima nuclear crisis: A case report.

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Ozaki, Akihiko; Tsubokura, Masaharu; Leppold, Claire; Sawano, Toyoaki; Tsukada, Manabu; Nemoto, Tsuyoshi; Kosugi, Kazuhiro; Nishikawa, Yoshitaka; Kato, Shigeaki; Ohira, Hiromichi

2017-11-01

The primary setting of palliative care has shifted from inpatient care to patients' residences. Family caregiving is essential for patients with life-limiting illnesses to receive palliative care at home, however little information is available regarding potential interventions to achieve palliative homecare for those without sufficient support from family members in various settings, including disasters. In March 2011, Fukushima, Japan experienced an earthquake, tsunami and nuclear disaster. In August 2015, a 59-year-old Japanese female presented to our hospital, located 23 km north of Fukushima Daiichi Nuclear Power Plant, with a right breast ulcer. The patient was diagnosed with stage IV breast cancer. The patient's general condition gradually worsened despite a one-year course of chemotherapy, and she became bedridden after a fall in October 2016. Although the patient wished to receive palliative homecare, this appeared challenging to achieve because she resided alone in a temporary housing shelter. Although she originally lived with her family in Odaka District, Fukushima, she relocated outside of the city following evacuation orders after the disaster. The evacuation orders for Odaka District were still in effect when she returned to the city alone in 2014. We contacted her sister who moved apart from her during the evacuation, and explained the necessity of family caregiving to enable her palliative homecare. The sister decided to move back to their original residence in Odaka District and live with the patient again. The patient successfully spent her end-of-life period and died at home. Health care providers and community health workers may need to take a pro-active approach to communicating with family members to draw informal support to enable patients' end-of-life management according to their values and preferences. This is a lesson which may be applicable to broader healthcare settings beyond cancer, or disaster contexts, considering that population

Continuing Bonds after Suicide Bereavement in Childhood

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Wood, Lindsey; Byram, Victoria; Gosling, A. Sophie; Stokes, Julie

2012-01-01

It has been argued that the grieving process after suicide bereavement has unique properties (e.g., J. R. Jordan, 2001). A qualitative study was conducted to explore one aspect of the grieving process--continuing bonds--after suicide bereavement in childhood. Data were collected through semi-structured interviews with 10 suicide-bereaved children…

Barriers to palliative care in people with chronic obstructive pulmonary disease in home care

DEFF Research Database (Denmark)

Mousing, Camilla Askov; Timm, Helle; Lomborg, Kirsten

2018-01-01

. Non-awareness and organisational barriers led to difficulties in identifying PC needs and reluctance to initiate conversations about PC. CONCLUSION: The findings indicate a need for education, training and reflection among professional caregivers in home care. Also, organisational changes may...... vague understanding of palliative care and lack of knowledge about the disease. Organisational barriers, such as lack of time and continuity in patient care and lack of opportunity to discuss palliative care and lack of peer learning were experienced as challenging in the provision of palliative care...... be needed to reduce the barriers to palliative care. This article is protected by copyright. All rights reserved....

Sibling bereavement and continuing bonds.

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Packman, Wendy; Horsley, Heidi; Davies, Betty; Kramer, Robin

2006-11-01

Historically, from a Freudian and medical model perspective, emotional disengagement from the deceased was seen as essential to the successful adaptation of bereavement. A major shift in the bereavement literature has occurred and it is now generally accepted that despite the permanence of physical separation, the bereaved remains involved and connected to the deceased and can be emotionally sustained through continuing bonds. The majority of literature has focused on adults and on the nature of continuing bonds following the death of a spouse. In this article, the authors demonstrate how the continuing bonds concept applies to the sibling relationship. We describe the unique continued relationship formed by bereaved children and adolescents following a sibling loss, highlight the factors that influence the siblings continuing bonds expressions, and offer clinical interventions. In our view, mental health professionals can play an important role in helping parents encourage activities that may facilitate the creation and maintenance of continuing bonds in their children.

Recovery Following Bereavement: Metaphor, Phenomenology, and Culture

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Rosenblatt, Paul C.

2008-01-01

The concept of recovery following bereavement can be both useful and misleading. As a metaphor, the concept of recovery highlights some aspects of bereavement and obscures others. Bereaved people interviewed in 3 different studies typically did not bring up the term recovery so it did not seem to be a term that described their experience. Across…

Meaning of bereavement among older African American widows.

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Rodgers, Laura S

2004-01-01

In spite of the increase in research on spousal bereavement, researchers have not specifically addressed the impact that ethnicity may have on the bereavement experience. The results of this descriptive phenomenological study increase the understanding of spousal bereavement among older African American widows. Storytelling was at the heart of every participant's description of her bereavement experience. Six themes were identified: awareness of death, care giving, getting through, moving on, changing feelings, and financial security. For nurses to effectively intervene in the lives of bereaved older African American widows, they must consider each widow's culture, heritage, and lived experiences, which can be ascertained through eliciting and listening to the widow's life stories.

Bereavement, multimorbidity and mortality: a population-based study using bereavement as an indicator of mental stress

DEFF Research Database (Denmark)

Prior, A; Fenger-Grøn, M; Davydow, D S

2017-01-01

BACKGROUND: Mental stress is associated with higher mortality, but it remains controversial whether the association is causal or a consequence of a higher physical disease burden in those with a high mental stress load. Understanding causality is important when developing targeted interventions. We...... with bereavement rose with increasing number of physical diseases (1.33 v. 7.00 excess death per 1000 person-months for individuals with 0 v. ⩾3 physical conditions during the first month) and was exacerbated by the presence of mental illness. The excess mortality among bereaved individuals was primarily due...... aimed to estimate the effect of mental stress on mortality by performing a 'natural' experiment using spousal bereavement as a disease-independent mental stressor. METHODS: We followed a population-based matched cohort, including all individuals in Denmark bereaved in 1997-2014, for 17 years...

Impact of partner bereavement on quality of cardiovascular disease management.

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Shah, Sunil M; Carey, Iain M; Harris, Tess; Dewilde, Stephen; Victor, Christina R; Cook, Derek G

2013-12-24

Bereavement is a period of increased risk of cardiovascular death. There is limited understanding of the potential contribution of quality of cardiovascular disease management to this increased risk. In a UK primary-care database, 12 722 older individuals with preexisting cardiovascular disease (coronary heart disease, hypertension, diabetes mellitus, stroke) and a partner bereavement were matched with a non-bereaved control group (n=33 911). We examined key routine annual process measures of care in the year before and after bereavement and cardiovascular medication prescribing (lipid-lowering, antiplatelet, renin-angiotensin system drugs). Odds ratios for change after bereavement compared with the change in non-bereaved matched controls are presented. In the bereaved, uptake of all annual measures was lower in the year before bereavement, with improvement in the year after, whereas in the controls, uptake was relatively stable. The odds ratio for change was 1.30 (95% confidence interval, 1.15-1.46) for cholesterol measurement and 1.40 (95% confidence interval, 1.22-1.61) for blood pressure measurement. For all medication, there was a transient fall in prescribing in the peri-bereavement period lasting until about 3 months after bereavement. The odds ratio for at least 80% prescription coverage in the 30 days after bereavement was 0.80 (95% confidence interval, 0.73-0.88) for lipid-lowering medication and 0.82 (95% confidence interval, 0.74-0.91) for antiplatelet medication compared with the change in non-bereaved individuals. Lower uptake of key cardiovascular care measures in the year before bereavement and reduced medication coverage after bereavement may contribute to increased cardiovascular risk. Clinicians need to ensure that quality of cardiovascular care is maintained in the pre- and post-bereavement periods.

When there are no good choices: illuminating the borderland between proportionate palliative sedation and palliative sedation to unconsciousness.

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Reid, Thomas T; Demme, Richard A; Quill, Timothy E

2011-01-01

Despite state-of-the-art palliative care, some patients will require proportionate palliative sedation as a last-resort option to relieve intolerable suffering at the end of life. In this practice, progressively increasing amounts of sedation are provided until the target suffering is sufficiently relieved. Uncertainty and debate arise when this practice approaches palliative sedation to unconsciousness (PSU), especially when unconsciousness is specifically intended or when the target symptoms are more existential than physical. We constructed a case series designed to highlight some of the common approaches and challenges associated with PSU and the more aggressive end of the spectrum of proportionate palliative sedation as retrospectively identified by palliative care consultants over the past 5 years from a busy inpatient palliative care service at a tertiary medical center in Rochester (NY, USA). Ten cases were identified as challenging by the palliative care attendings, of which four were selected for presentation for illustrative purposes because they touched on central issues including loss of capacity, the role of existential suffering, the complexity of clinical intention, the role of an institutional policy and use of anesthetics as sedative agents. Two other cases were selected focusing on responses to two special situations: a request for PSU that was rejected; and anticipatory planning for total sedation in the future. Although relatively rare, PSU and more aggressive end-of-the-spectrum proportionate palliative sedation represent responses to some of the most challenging cases faced by palliative care clinicians. These complex cases clearly require open communication and collaboration among caregivers, patients and family. Knowing how to identify these circumstances, and how to approach these interventions of last resort are critical skills for practitioners who take care of patients at the end of life.

Palliative home care: A designer′s perspective

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Tigmanshu Bhatnagar

2015-01-01

Full Text Available The purpose for this observational research was to understand how Can Support provides palliative care at home and analyze its strengths and weaknesses in various socioeconomic scenarios for future development. In the period of 2 weeks, patients and their caregivers were silently observed in their natural surroundings during home care visits in order to listen their problems, identify the pattern of questions for the home care team, their natural way of storytelling, organizational techniques for medicines and medical reports, care givers lives, patient journey, etc. Such observations have enabled the understanding of the phenomena of home palliative care and have led to the identification of certain influential variables of the practice.

Maintaining the Social Flow of Evidence-Informed Palliative Care: Use and Misuse of YouTube

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Jamwal, Nisha Rani; Kumar, Senthil Paramasivam

2016-01-01

This review article is aimed to explore the use of the social media website YouTube (www.youtube.com) as an evidence resource in palliative care, for patients and caregivers, students and professionals, and providers and policy-makers in developing countries’ settings. The reviewed evidence reiterated the role of this social media website in palliative care practice, education and research in the area of cancer. Efficacy studies on impact of such media on palliative care delivery in developing countries are still lacking. PMID:26962290

A Home-Based Palliative Care Consult Service for Veterans.

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Golden, Adam G; Antoni, Charles; Gammonley, Denise

2016-11-01

We describe the development and implementation of a home-based palliative care consult service for Veterans with advanced illness. A retrospective chart review was performed on 73 Veterans who received a home-based palliative care consult. Nearly one-third were 80 years of age or older, and nearly one-third had a palliative diagnosis of cancer. The most common interventions of the consult team included discussion of advance directives, completion of a "do not resuscitate" form, reduction/stoppage of at least 1 medication, explanation of diagnosis, referral to home-based primary care program, referral to hospice, and assessment/support for caregiver stress. The home-based consult service was therefore able to address clinical and psychosocial issues that can demonstrate a direct benefit to Veterans, families, and referring clinicians. © The Author(s) 2015.

Family caregiver learning--how family caregivers learn to provide care at the end of life: a qualitative secondary analysis of four datasets.

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Stajduhar, Kelli I; Funk, Laura; Outcalt, Linda

2013-07-01

Family caregivers are assuming growing responsibilities in providing care to dying family members. Supporting them is fundamental to ensure quality end-of-life care and to buffer potentially negative outcomes, although family caregivers frequently acknowledge a deficiency of information, knowledge, and skills necessary to assume the tasks involved in this care. The aim of this inquiry was to explore how family caregivers describe learning to provide care to palliative patients. Secondary analysis of data from four qualitative studies (n = 156) with family caregivers of dying people. Data included qualitative interviews with 156 family caregivers of dying people. Family caregivers learn through the following processes: trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences. Caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or told by others, usually learning reactively after a crisis. Findings inform areas for future research to identify effective, individualized programs and interventions to support positive learning experiences for family caregivers of dying people.

Multiple social contexts in qualitative bereavement research

Science.gov (United States)

Moss, Miriam S.; Moss, Sidney

2012-01-01

Little research focuses on the ways that bereaved family members react to and make meaning of their experience of the death of an elderly father and husband. In a qualitative, ethnographic study of 34 bereaved families we examined how family members respond to two inter-related social contexts: 1. Social-cultural values and attitudes such as attitudes toward grieving for old persons, and 2. The inter-personal dyadic relationship between interviewer and interviewee. An underlying theme of uncertainty pervades the study participants’ views of what is normal and expected in their own process of bereavement. Implications for future bereavement research are suggested. PMID:22939542

Validating that palliative care giving is a stressful occupation: the ...

African Journals Online (AJOL)

Background: It remains an incontrovertible fact that the phenomenon of HIV/AIDS has not only posed major health and development challenges, but is also a stressor experienced at local, regional and global levels. This article explores the stressrelated challenges facing volunteer palliative caregivers in the Kanye ...

Effects of suicide bereavement on mental health and suicide risk

DEFF Research Database (Denmark)

Pitman, Alexandra; Osborn, David; King, Michael

2014-01-01

to psychiatric care for parents bereaved by the suicide of an offspring, increased risk of suicide in mothers bereaved by an adult child's suicide, and increased risk of depression in offspring bereaved by the suicide of a parent. Some evidence was shown for increased rejection and shame in people bereaved......Between 48 million and 500 million people are thought to experience suicide bereavement every year. Over the past decade, increased policy attention has been directed towards suicide bereavement, but with little evidence to describe the effect of exposure or to provide appropriate responses. We...... used a systematic approach to carry out a narrative review of studies of the effect of suicide bereavement on mortality, mental health, and social functioning, and compared them with effects from other bereavements. We found 57 studies that satisfied strict inclusion criteria. Results from...

Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives.

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Bede, Peter; Oliver, David; Stodart, James; van den Berg, Leonard; Simmons, Zachary; O Brannagáin, Doiminic; Borasio, Gian Domenico; Hardiman, Orla

2011-04-01

Amyotrophic lateral sclerosis (ALS) is a relentlessly progressive neurodegenerative condition. Optimal management requires a palliative approach from diagnosis with emphasis on patient autonomy, dignity and quality of life. To conduct a systematic analysis of the type, level and timing of specialist palliative care intervention in ALS. Despite an international consensus that ALS management should adopt a multidisciplinary approach, integration of palliative care into ALS management varies considerably across health care systems. Late referral to palliative services in ALS is not uncommon and may impact negatively on the quality of life of ALS patients and their caregivers. However, common themes and principles of engagement can be identified across different jurisdictions, and measurement systems have been established that can assess the impact of palliative care intervention. There is considerable evidence that palliative care intervention improves quality of life in patients and carers. International consensus guidelines would assist in the development of a framework for active palliative care engagement in ALS and other neurodegenerative diseases.

An assessment of hospice bereavement programs for Hispanics.

Science.gov (United States)

Arriaza, Pablo; Martin, Shadi S; Csikai, Ellen L

2011-01-01

Hispanics are the fastest growing minority group in the United States, numbering over 42 million and comprising 15% of the total population (U.S. Census Bureau, 2008 ). Hispanics are a heterogeneous group that experience disparities in accessing health care, including at the end of life. Specific gaps can be identified in the care of bereaved Hispanic individuals and families. This exploratory study examined bereavement services available and perceived needs for Hispanics in Florida. Hospice bereavement coordinators indicated that limited services were available specifically for Spanish-speakers and that language and cultural barriers were challenges when communicating, offering, and delivering bereavement services to Hispanics. Implications for social workers include the need to increase access to and evaluate the effectiveness of bereavement services for Hispanics.

Bereavement dream? Successful antidepressant treatment for bereavement-related distressing dreams in patients with major depression.

Science.gov (United States)

Ishida, Mayumi; Onishi, Hideki; Wada, Mei; Wada, Tomomi; Wada, Makoto; Uchitomi, Yosuke; Nomura, Shinobu

2010-03-01

The death of a person is a stressful event. Such stress affects the physical and psychological well-being of the bereaved. As an associated mental disorder, major depressive disorder (MDD) is common. Some dream of the deceased, and these dreams are called bereavement dreams. Some MDD patients also experience dreams. These two types of dreams are sometimes difficult to differentiate. The dream of the bereaved might be only a bereavement-related dream, yet it might be a symptom of MDD. Herein, we report one patient who had distressing dreams after the death of her mother. A 63-year-old woman was referred for psychiatric consultation because of generalized fatigue and insomnia. Questioning her about recent events, she said that her mother had died of colonic carcinoma 5 months previously. Two months after the death, she suddenly started dreaming of her mother, getting angry with her almost every night. Generalized fatigue, insomnia, and distressing dreams appeared simultaneously. The dream caused much distress, making her afraid to fall asleep. Her psychiatric features fulfilled the DSM-IV-TR criteria for MDD, single episode. The death of her mother was considered to be one of the causes of MDD. She was administered 25 mg/day of sertraline hydrochloride. After that, her symptoms gradually disappeared, and the frequency of distressing dreams was reduced. Five months later, physical and psychiatric symptoms of MDD were completely resolved. Subsequently, she has not suffered from any distressing dreams of her mother. This case indicates that dreams experienced after the death of a loved one should not be regarded simply as bereavement dreams. Some of the dreams may be symptoms of MDD. If the dreams are the symptoms of MDD, antidepressant treatment as well as psychotherapy may be useful. Therefore, we should avoid regarding symptoms of MDD as reactions to bereavement.

The Impact of Suicide Bereavement on Educational and Occupational Functioning: A Qualitative Study of 460 Bereaved Adults.

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Pitman, Alexandra; Khrisna Putri, Adelia; De Souza, Tanisha; Stevenson, Fiona; King, Michael; Osborn, David; Morant, Nicola

2018-03-31

People bereaved by suicide are at an increased risk of suicide and of dropping out of education or work. Explanations for these associations are unclear, and more research is needed to understand how improving support in educational or work settings for people bereaved by suicide might contribute to reducing suicide risk. Our objective was to explore the impact of suicide on occupational functioning. We conducted a cross-sectional online study of bereaved adults aged 18-40, recruited from staff and students of British higher educational institutions in 2010. We used thematic analysis to analyse free text responses to two questions probing the impact of suicide bereavement on work and education. Our analysis of responses from 460 adults bereaved by suicide identified three main themes: (i) specific aspects of grief that impacted on work performance, cognitive and emotional domains, and social confidence; (ii) structural challenges in work or educational settings including a lack of institutional support, the impact of taking time off, and changes to caring roles; and (iii) new perspectives on the role of work, including determination to achieve. Institutional support should be tailored to take account of the difficulties and experiences described.

Bereavement: a postgraduate training design for psychologists

Directory of Open Access Journals (Sweden)

Maricel Peña Villamar

2015-09-01

Full Text Available Background: death is a fact that impacts the lives of all human beings, so that it can neither be ignored nor distanced from its subsequent bereavement period, even if being wished. The grief reaction is one of the problems that most frequently demand the assistance of health staff, especially psychologists in all health care areas.Objective: to devise a system of activities that contributes to increase the psychologists’ knowledge about bereavement and its management.Methods: a multiple cases study was carried out with the application of two research instruments (questionnaire and interview to those psychologists who work in primary and secondary health care in Las Tunas municipality to diagnose their needs related to the management of bereavement. Qualitative methodology was used, based on the method of participatory action research, and workshops were designed as forms of educational intervention.Results: it was proved that psychologists have insufficient theoretical and methodological training in relation to care for the bereaved. Consequently, psychotherapeutic workshops were designed, offering the general methodology and procedures to be followed by the professional who assists the bereaved.Conclusions: psychotherapeutic workshops constitute a referential theoretical and practical model very useful for the preparation of psychologists to deal with bereavement.

Providing palliative care to patients with cancer: Addressing the needs in Kenya

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Pam Malloy

2017-01-01

Full Text Available Cancer is the third highest cause of death in Kenya, preceded by infectious and cardiovascular diseases, and in most cases, diagnosed in later stages. Nurses are the primary caregivers, assessing and managing these patients in the clinic, in inpatient settings, and in rural and remote communities. While cancer rates remain high, the burden to the patient, the caregiver, and society as a whole continues to rise. Kenya's poverty complicates cancer even further. Many Kenyans are unaware of cancer's signs and symptoms, and limited diagnostic and treatment centers are available. Despite these barriers, there is still hope and help for those in Kenya, who suffer from cancer. The World Health Organization has stated that palliative care is a basic human right and nurses providing this care in Kenya are making efforts to support cancer patients' ongoing needs, in order to promote compassionate palliative care and prevent suffering. The purpose of this paper is to address the palliative care needs of patients with cancer in Kenya by providing education to nurses and influencing health-care policy and education at micro and macro levels. A case study weaved throughout will highlight these issues.

Parental Bereavement in Young Children Living in South Africa and Malawi: Understanding Mental Health Resilience.

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Macedo, A; Sherr, L; Tomlinson, M; Skeen, S; Roberts, K J

2018-04-17

Parental loss is a major stressful event found to increase risk of mental health problems in childhood. Yet, some children show resilient adaptation in the face of adversity across time. This study explores predictors of mental health resilience among parentally bereaved children in South Africa and Malawi, and their cumulative effect. The study also explores whether predictors of resilience differed between orphaned and non-orphaned children. Consecutive attenders of community based organisations (children;4-13 years, and their caregivers) were interviewed at baseline and 15-18 month follow up (n=833). Interviews comprised of inventories on demographic information, family data, child mental health, bereavement experience and community characteristics. Mental health screens were used to operationalise resilience as the absence of symptoms of depression, suicidality, trauma, emotional and behavioural problems. Almost 60% of children experienced parental loss. One quarter of orphaned children showed no mental health problems at either wave and were classified as resilient. There were equal proportions of children classified as resilient within the orphaned (25%) vs. non-orphaned group (22%). Being a quick learner, aiding ill family members, positive caregiving, household employment, higher community support, and lower exposure to domestic violence, physical punishment, or stigma at baseline predicted sustained resilience. There were cumulative influences of resilience predictors among orphaned children. Predictors of resilience did not vary by child age, gender, country of residence or between orphaned and non-orphaned children. This study enhances understanding of resilience in younger children and identifies a number of potential environmental and psychosocial factors for bolstering resilience in orphaned children.

A conceptual model: Redesigning how we provide palliative care for patients with chronic obstructive pulmonary disease.

Science.gov (United States)

Philip, Jennifer; Crawford, Gregory; Brand, Caroline; Gold, Michelle; Miller, Belinda; Hudson, Peter; Smallwood, Natasha; Lau, Rosalind; Sundararajan, Vijaya

2017-05-31

Despite significant needs, patients with chronic obstructive pulmonary disease (COPD) make limited use of palliative care, in part because the current models of palliative care do not address their key concerns. Our aim was to develop a tailored model of palliative care for patients with COPD and their family caregivers. Based on information gathered within a program of studies (qualitative research exploring experiences, a cohort study examining service use), an expert advisory committee evaluated and integrated data, developed responses, formulated principles to inform care, and made recommendations for practice. The informing studies were conducted in two Australian states: Victoria and South Australia. A series of principles underpinning the model were developed, including that it must be: (1) focused on patient and caregiver; (2) equitable, enabling access to components of palliative care for a group with significant needs; (3) accessible; and (4) less resource-intensive than expansion of usual palliative care service delivery. The recommended conceptual model was to have the following features: (a) entry to palliative care occurs routinely triggered by clinical transitions in care; (b) care is embedded in routine ambulatory respiratory care, ensuring that it is regarded as "usual" care by patients and clinicians alike; (c) the tasks include screening for physical and psychological symptoms, social and community support, provision of information, and discussions around goals and preferences for care; and (d) transition to usual palliative care services is facilitated as the patient nears death. Our proposed innovative and conceptual model for provision of palliative care requires future formal testing using rigorous mixed-methods approaches to determine if theoretical propositions translate into effectiveness, feasibility, and benefits (including economic benefits). There is reason to consider adaptation of the model for the palliative care of patients with

Development of a nationwide consensus syllabus of palliative medicine for undergraduate medical education in Japan: a modified Delphi method.

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Kizawa, Yoshiyuki; Tsuneto, Satoru; Tamba, Kaichiro; Takamiya, Yusuke; Morita, Tatsuya; Bito, Seiji; Otaki, Junji

2012-07-01

There is currently no consensus syllabus of palliative medicine for undergraduate medical education in Japan, although the Cancer Control Act proposed in 2007 covers the dissemination of palliative care. To develop a nationwide consensus syllabus of palliative medicine for undergraduate medical education in Japan using a modified Delphi method. We adopted the following three-step method: (1) a workshop to produce the draft syllabus; (2) a survey-based provisional syllabus; (3) Delphi rounds and a panel meeting (modified Delphi method) to produce the working syllabus. Educators in charge of palliative medicine from 63% of the medical schools in Japan collaborated to develop a survey-based provisional syllabus before the Delphi rounds. A panel of 32 people was then formed for the modified Delphi rounds comprising 28 educators and experts in palliative medicine, one cancer survivor, one bereaved family member, and two medical students. The final consensus syllabus consists of 115 learning objectives across seven sections as follows: basic principles; disease process and comprehensive assessment; symptom management; psychosocial care; cultural, religious, and spiritual issues; ethical issues; and legal frameworks. Learning objectives were categorized as essential or desirable (essential: 66; desirable: 49). A consensus syllabus of palliative medicine for undergraduate medical education was developed using a clear and innovative methodology. The final consensus syllabus will be made available for further dissemination of palliative care education throughout the country.

Communication differences when patients and caregivers are seen separately or together.

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Swetenham, Kate; Tieman, Jennifer; Butow, Phyllis; Currow, David

2015-11-01

Southern Adelaide Palliative Care Services introduced a nurse-led early introduction to a palliative care clinic in 2011. The clinic offers a thorough psychosocial assessment and the provision of information and an introduction to future care planning. The patients and their caregivers are seen together by the nurse practitioner initially for a physical assessment. They are then seen by a social worker to focus on advanced care planning and assessment of social and emotional factors. After the social work visit, the patient and caregiver are separated, and the patient sees the psychosocial nurse for coping and adjustment to illness and the carer sees the caregiver network facilitator to assess their informal supports to assist in the role of community-based caregiving. The pilot study looks at the nature of communication in the clinic where patient and carer are together and compares that to when they are separated. A total of 33 patients and their caregivers agreed for their coversations to be tape recorded between May and November of 2013. All tape recordings were transcribed verbatim. Ten patient transcripts (n=40) have been coded for quantitative analysis. The codes identify content and function of speech, cues for information and emotion and whether they are responded to by clinicians. Pilot results reveal that caregivers contribute little in the combined clinics and dominate the conversation in the private clinic. Patients, when seen alone, predominantly express emotion related cues, opposed to cues for information. The clinicians focus on their area of specialty, which results in little duplication in this clinic setting. An earlier evaluation of this clinic found that patients and their caregivers appreciate being separated in the clinic setting to have time and privacy to reveal fears and feelings related to end-of-life care. This current study quantifies the patient and caregiver experience and confirms those earlier findings.

Music therapy in palliative care: current perspectives.

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O'Kelly, Julian

2002-03-01

As the music therapy profession has developed internationally over the last 25 years, so has its role in palliative care. Music is a highly versatile and dynamic therapeutic modality, lending itself to a variety of music therapy techniques used to benefit both those living with life-threatening illnesses and their family members and caregivers. This article will give a broad overview of the historical roots of music therapy and introduce the techniques that are employed in current practice. By combining a review of mainstream music therapy practice involving musical improvisation, song-writing and receptive/recreational techniques with case material from my own experience, this article aims to highlight the potential music therapy holds as an effective holistic practice for palliative care, whatever the care setting.

Death and Dying Anxiety among Bereaved and Nonbereaved Elderly Parents

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Azaiza, Faisal; Ron, Pnina; Shoham, Meyrav; Tinsky-Roimi, Tal

2011-01-01

This study examines differences in death and dying anxiety between bereaved and nonbereaved elderly Israeli parents, as well as correlates of these factors among bereaved parents. A total of 97 parents (49 bereaved, 48 nonbereaved) completed measures of death and dying anxiety and religiosity. Bereaved parents reported significantly higher dying…

Professional carers' experiences of providing a pediatric palliative care service in Ireland.

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Clarke, Jean; Quin, Suzanne

2007-11-01

In this article the authors present findings on professional carers' experience of providing pediatric palliative care to children with life-limiting conditions. For this qualitative study, part of a national pediatric palliative care needs analysis, the authors engaged in 15 focus group interviews and drew on the responses of open-ended questions to give voice to the experiences of professional carers and to situate the humanity of their caring reality. This humanity is articulated through three themes: clarity of definition and complexity of engagement, seeking to deliver a palliative care service, and the emotional cost of providing palliative care. Further analysis of these themes points to a work-life experience of skilled and emotional engagement with children, and their parents, in complex processes of caregiving and decision making. Pediatric palliative care occurs in an environment where parents shoulder a large burden of the care and professionals find themselves working in underresourced services.

Prevalence, incidence and associated factors of pressure ulcers in home palliative care patients: A retrospective chart review.

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Artico, Marco; Dante, Angelo; D'Angelo, Daniela; Lamarca, Luciano; Mastroianni, Chiara; Petitti, Tommasangelo; Piredda, Michela; De Marinis, Maria Grazia

2018-01-01

Terminally ill patients are at high risk of pressure ulcers, which have a negative impact on quality of life. Data about pressure ulcers' prevalence, incidence and associated factors are largely insufficient. To document the point prevalence at admission and the cumulative incidence of pressure ulcers in terminally ill patients admitted to an Italian home palliative care unit, and to analyse the patients' and caregivers' characteristics associated with their occurrence. Retrospective chart review. Patients ( n = 574) with a life expectancy ⩽6 months admitted to a palliative home care service were included in this study. The prevalence and incidence rates were 13.1% and 13.0%, respectively. The logistic regression models showed body mass index ( p 70 and >1 caregiver at home as the dichotomous variables predictors of presenting with a pressure ulcer at time of admission and during home palliative care. The notable pressure ulcers' incidence and prevalence rates suggest the need to include this issue among the main outcomes to pursue during home palliative care. The accuracy of body mass index, Braden Scale and Karnofsky Performance Scale in predicting the pressure ulcers risk is confirmed. Therefore, they appear as essential tools, in combination with nurses' clinical judgment, for a structured approach to pressure ulcers prevention. Further research is needed to explore the home caregivers' characteristics and attitudes associated with the occurrence of pressure ulcers and the relations between their strategies for pressure ulcer prevention and gender-related patient's needs.

Defining High-Quality Palliative Care in Oncology Practice: An American Society of Clinical Oncology/American Academy of Hospice and Palliative Medicine Guidance Statement.

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Bickel, Kathleen E; McNiff, Kristen; Buss, Mary K; Kamal, Arif; Lupu, Dale; Abernethy, Amy P; Broder, Michael S; Shapiro, Charles L; Acheson, Anupama Kurup; Malin, Jennifer; Evans, Tracey; Krzyzanowska, Monika K

2016-09-01

Integrated into routine oncology care, palliative care can improve symptom burden, quality of life, and patient and caregiver satisfaction. However, not all oncology practices have access to specialist palliative medicine. This project endeavored to define what constitutes high-quality primary palliative care as delivered by medical oncology practices. An expert steering committee outlined 966 palliative care service items, in nine domains, each describing a candidate element of primary palliative care delivery for patients with advanced cancer or high symptom burden. Using modified Delphi methodology, 31 multidisciplinary panelists rated each service item on three constructs: importance, feasibility, and scope within medical oncology practice. Panelists endorsed the highest proportion of palliative care service items in the domains of End-of-Life Care (81%); Communication and Shared Decision Making (79%); and Advance Care Planning (78%). The lowest proportions were in Spiritual and Cultural Assessment and Management (35%) and Psychosocial Assessment and Management (39%). In the largest domain, Symptom Assessment and Management, there was consensus that all symptoms should be assessed and managed at a basic level, with more comprehensive management for common symptoms such as nausea, vomiting, diarrhea, dyspnea, and pain. Within the Appropriate Palliative Care and Hospice Referral domain, there was consensus that oncology practices should be able to describe the difference between palliative care and hospice to patients and refer patients appropriately. This statement describes the elements comprising high-quality primary palliative care for patients with advanced cancer or high symptom burden, as delivered by oncology practices. Oncology providers wishing to enhance palliative care delivery may find this information useful to inform operational changes and quality improvement efforts. Copyright © 2016 by American Society of Clinical Oncology.

Paediatric palliative care : recommendations for treatment of symptoms in the Netherlands

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Knops, Rutger R G; Kremer, Leontien C M; Verhagen, A A Eduard

2015-01-01

BACKGROUND: Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high

Paediatric palliative care: recommendations for treatment of symptoms in the Netherlands

NARCIS (Netherlands)

Knops, Rutger R. G.; Kremer, Leontien C. M.; Verhagen, A. A. Eduard; Beek, L.; Fock, J. M.; Hartvelt-Faber, G.; Mensink, M. O.; Michiels, E. C. M.; Schouten-van Meeteren, A. Y. N.; Uitdehaag, M. J.; Venmans, L. M. A. J.; Verhagen, A. A. E.; de Weerd, W.

2015-01-01

Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high quality

Palliative care nurses' views on euthanasia.

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Verpoort, Charlotte; Gastmans, Chris; Dierckx de Casterlé, Bernadette

2004-09-01

In debates on euthanasia legalization in Belgium, the voices of nurses were scarcely heard. Yet studies have shown that nurses are involved in the caring process surrounding euthanasia. Consequently, they are in a position to offer valuable ideas about this problem. For this reason, the views of these nurses are important because of their palliative expertise and their daily confrontation with dying patients. The aim of this paper is to report a study of the views of palliative care nurses about euthanasia. A grounded theory approach was chosen, and interviews were carried out with a convenience sample of 12 palliative care nurses in Flanders (Belgium). The data were collected between December 2001 and April 2002. The majority of the nurses were not a priori for or against euthanasia, and their views were largely dependent on the situation. What counted was the degree of suffering and available palliative options. Depending on the situation, we noted both resistance and acceptance towards euthanasia. The underlying arguments for resistance included respect for life and belief in the capabilities of palliative care; arguments underlying acceptance included the quality of life and respect for patient autonomy. The nurses commented that working in palliative care had a considerable influence on one's opinion about euthanasia. In light of the worldwide debate on euthanasia, it is essential to know how nurses, who are confronted with terminally ill patients every day, think about it. Knowledge of these views can also contribute to a realistic and qualified view on euthanasia itself. This can be enlightening to the personal views of caregivers working in a diverse range of care settings.

Examining trust in health professionals among family caregivers of nursing home residents with advanced dementia.

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Boogaard, Jannie A; Werner, Perla; Zisberg, Anna; van der Steen, Jenny T

2017-12-01

In a context of increasing emphasis on shared decision-making and palliative care in dementia, research on family caregivers' trust in health professionals in advanced dementia is surprisingly scant. The aim of the present study was to assess trust in nursing home health professionals of family caregivers of nursing home residents with advanced dementia, and possible correlates, such as family caregivers' satisfaction, involvement in care, care burden and patients' symptom burden. A cross-sectional study was carried out using structured questionnaires administered through the telephone. Generalized estimating equation analyses with adjustment for nursing home clustering were applied to assess the most important associations with family caregivers' trust. A total of 214 family caregivers of persons with dementia residing in 25 nursing homes participated in the study. The majority of the participants (67%) were women and adult children (75%). The majority of the family caregivers trusted physicians, nurses and nurses' aides at a moderate-to-high level. Approximately half to one-third reported moderate-to-low levels of trust. Higher levels of trust were associated with more positive care outcomes, such as higher family satisfaction with care and more positive evaluations of physician-family communication. The present study showed the importance of family caregivers trusting nursing home health professionals for their experiences as caregivers. Although causation cannot be established, increased family caregivers' trust in nursing home health professionals by improving communication and exchange of information might provide a good basis for providing optimal palliative care in advanced dementia. Geriatr Gerontol Int 2017; 17: 2466-2471. © 2017 Japan Geriatrics Society.

[Neonatal palliative care and culture].

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Bétrémieux, P; Mannoni, C

2013-09-01

The period of palliative care is a difficult time for parents and caregivers because they are all weakened by the proximity of death. First of all, because of religious and cultural differences, parents and families cannot easily express their beliefs or the rituals they are required to develop; second, this impossibility results in conflicts between the caregiver team and the family with consequences for both. Caregivers are concerned to allow the expression of religious beliefs and cultural demands because it is assumed that they may promote the work of mourning by relating the dead child to its family and roots. However, caregivers' fear not knowing the cultural context to which the family belongs and having inappropriate words or gestures, as sometimes families dare not, cannot, or do not wish to describe their cultural background. We attempt to differentiate what relates to culture and to religion and attempt to identify areas of potential disagreement between doctors, staff, and family. Everyone has to work with the parents to open a space of freedom that is not limited by cultural and religious assumptions. The appropriation of medical anthropology concepts allows caregivers to understand simply the obligations imposed on parents by their culture and/or their religion and open access to their wishes. Sometimes help from interpreters, mediators, ethnopsychologists, and religious representatives is needed to understand this reality. Copyright © 2013 Elsevier Masson SAS. All rights reserved.

The experiences of relatives with the practice of palliative sedation: a systematic review.

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Bruinsma, Sophie M; Rietjens, Judith A C; Seymour, Jane E; Anquinet, Livia; van der Heide, Agnes

2012-09-01

Guidelines about palliative sedation typically include recommendations to protect the well-being of relatives. The aim of this study was to systematically review evidence on the experiences of relatives with the practice of palliative sedation. PubMed, Embase, Web of Science, PsycINFO, and CINAHL were searched for empirical studies on relatives' experiences with palliative sedation. We investigated relatives' involvement in the decision-making and sedation processes, whether they received adequate information and support, and relatives' emotions. Of the 564 studies identified, 39 were included. The studies (30 quantitative, six qualitative, and three mixed methods) were conducted in 16 countries; three studies were based on relatives' reports, 26 on physicians' and nurses' proxy reports, seven on medical records, and three combined different sources. The 39 studies yielded a combined total of 8791 respondents or studied cases. Caregivers involved relatives in the decision making in 69%-100% of all cases (19 quantitative studies), and in 60%-100% of all cases, relatives were reported to have received adequate information (five quantitative studies). Only two quantitative studies reported on relatives' involvement in the provision of sedation. Despite the fact that the majority of relatives were reported to be comfortable with the use of palliative sedation (seven quantitative studies, four qualitative studies), several studies found that relatives were distressed by the use of sedation (five quantitative studies, five qualitative studies). No studies reported specifically about the support provided to the relatives. Relatives' experiences with palliative sedation are mainly studied from the perspective of proxies, mostly professional caregivers. The majority of relatives seems to be comfortable with the use of palliative sedation; however, they may experience substantial distress by the use of sedation. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published

Factors affecting rural volunteering in palliative care - an integrated review.

Science.gov (United States)

Whittall, Dawn; Lee, Susan; O'Connor, Margaret

2016-12-01

To review factors shaping volunteering in palliative care in Australian rural communities using Australian and International literature. Identify gaps in the palliative care literature and make recommendations for future research. A comprehensive literature search was conducted using Proquest, Scopus, Sage Premier, Wiley online, Ovid, Cochran, Google Scholar, CINAHL and Informit Health Collection. The literature was synthesised and presented in an integrated thematic narrative. Australian Rural communities. While Australia, Canada, the United States (US) and the United Kingdom (UK) are leaders in palliative care volunteer research, limited research specifically focuses on volunteers in rural communities with the least occurring in Australia. Several interrelated factors influence rural palliative care provision, in particular an increasingly ageing population which includes an ageing volunteer and health professional workforce. Also current and models of palliative care practice fail to recognise the innumerable variables between and within rural communities such as distance, isolation, lack of privacy, limited health care services and infrastructure, and workforce shortages. These issues impact palliative care provision and are significant for health professionals, volunteers, patients and caregivers. The three key themes of this integrated review include: (i) Geography, ageing rural populations in palliative care practice, (ii) Psychosocial impact of end-end-of life care in rural communities and (iii) Palliative care models of practice and volunteering in rural communities. The invisibility of volunteers in rural palliative care research is a concern in understanding the issues affecting the sustainability of quality palliative care provision in rural communities. Recommendations for future Australian research includes examination of the suitability of current models of palliative care practice in addressing the needs of rural communities; the recruitment

The dangers of involving children as family caregivers of palliative home-based-care to advanced HIV/AIDS patients

Directory of Open Access Journals (Sweden)

S M Kang′ethe

2010-01-01

Full Text Available The aim of this research paper is to explore the dangers of involving children as family caregivers of palliative care and home-based-care to advanced HIV/AIDS patients, while its objective is to discuss the dangers or perfidiousness that minors especially the girl children face as they handle care giving of advanced HIV/AIDS patients. The article has relied on eclectic data sources. The research has foundminors disadvantaged by the following: being engulfed by fear and denied rights through care giving; being emotionally and physiologically overwhelmed; being oppressed and suppressed by caring duties; being at risk of contracting HIV/AIDS; and having their education compromised by care giving. The paper recommends: (1 strengthening and emphasizing on children′s rights; (2 maintaining gender balance in care giving; (3 implementation and domestication of the United Nations conventions on the rights of children; (4 community awareness on equal gender co participation in care giving; (5 and fostering realization that relying on child care giving is a negative score in fulfilling global Millennium Development Goals.

[Living with advanced chronic obstructive pulmonary disease: The impact of dyspnoea on patients and caregivers].

Science.gov (United States)

Costa, Xavier; Gómez-Batiste, Xavier; Pla, Margarida; Martínez-Muñoz, Marisa; Blay, Carles; Vila, Laura

2016-12-01

To understand the experiences of patients and caregivers living with advanced chronic obstructive pulmonary disease, the impact of their symptoms and care needs arising from a functional, emotional, and social context. Qualitative study. Phenomenological perspective. Data were collected during 2013-2015. Primary, secondary and intermediate care. Osona (Barcelona). The study included 10 Primary Care patients with advanced chronic obstructive pulmonary disease, their respective 10 caregivers, and 19 primary care professionals, as well as 2 lung specialists, 2 palliative care professionals involved in their care, and one clinical psychologist. Theoretical sampling. Semi-structured and in-depth interviews with patients, caregivers, and professionals (47 interviews). The emergent topics identified in patients and caregivers interviews refer to dyspnoea, the predominant symptom without effective treatment and with a major impact on patients and caregivers lives. A symptom with great functional, emotional and social repercussions to which they need to adapt in order to survive. Beyond pharmacological measures to control respiratory symptoms, proper care of patients with chronic obstructive pulmonary disease, requires understanding of suffering, the losses and limitations that it causes in their lives and those of their caregivers. A palliative, holistic and closer approach to their real experiences, together with an empowerment to adapt to debilitating symptoms, could contribute to a better life in the end-stages of the disease. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

A favorable course of palliative sedation: searching for indicators using caregivers' perspectives.

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Brinkkemper, Tijn; Rietjens, Judith A C; Deliens, Luc; Ribbe, Miel W; Swart, Siebe J; Loer, Stephan A; Zuurmond, Wouter W A; Perez, Roberto S G M

2015-03-01

Comparing characteristics of a favorable sedation course during palliative sedation to a less favorable course based on the reports Dutch physicians and nurses. Cases identified as having a favorable sedation course less often concerned a male patient (P = .019 nurses' cases), reached the intended sedation depth significantly quicker (P sedation (P = .015 physicians' cases), and had a shorter total duration of sedation compared (P sedation course. A favorable course during palliative sedation seems more probable when health care professionals report on a (relatively) shorter time to reach the required depth of sedation and when a deeper level of sedation can be obtained. © The Author(s) 2013.

Managing bereavement in the classroom: a conspiracy of silence?

Science.gov (United States)

Lowton, Karen; Higginson, Irene J

2003-10-01

The ways in which teachers in British schools manage bereaved children are underreported. This article reports the impact of students' bereavement and their subsequent management in primary and secondary school classrooms in Southeast London. Thirteen school staff working in inner-city schools took part in in-depth interviews that focused on the impact of bereaved children on the school and how teachers responded to these children.All respondents had previously had contact with a local child bereavement service that aims to provide support, advice, and consultancy to children, their parents, and teachers. Interviews were audiotaped, transcribed verbatim, and analyzed using ATLAS-ti. Three main themes were identified from analysis of interview data. Firstly, British society, culture, local communities, and the family were significant influences in these teachers' involvement with bereaved students. Secondly, school staff managed bereaved students through contact with other adults and using practical classroom measures such as "time out" cards and contact books. Lastly, teachers felt they had to be strong, even when they were distressed. Surprise was expressed at the mature reaction of secondary school students to deaths of others. The article recommends that future research needs to concentrate on finding the most effective way of supporting routinely bereaved children, their families, and teachers.

Pressure Injury Progression and Factors Associated With Different End-Points in a Home Palliative Care Setting: A Retrospective Chart Review Study.

Science.gov (United States)

Artico, Marco; D'Angelo, Daniela; Piredda, Michela; Petitti, Tommasangelo; Lamarca, Luciano; De Marinis, Maria Grazia; Dante, Angelo; Lusignani, Maura; Matarese, Maria

2018-07-01

Patients with advanced illnesses show the highest prevalence for pressure injuries. In the palliative care setting, the ultimate goal is injury healing, but equally important is wound maintenance, wound palliation (wound-related pain and symptom management), and primary and secondary wound prevention. To describe the course of healing for pressure injuries in a home palliative care setting according to different end-points, and to explore patient and caregiver characteristics and specific care activities associated with their achievement. Four-year retrospective chart review of 669 patients cared for in a home palliative care service, of those 124 patients (18.5%) had at least one pressure injury with a survival rate less than or equal to six months. The proportion of healed pressure injuries was 24.4%. Of the injuries not healed, 34.0% were in a maintenance phase, whereas 63.6% were in a process of deterioration. Body mass index (P = 0.0014), artificial nutrition (P = 0.002), and age pay attention to artificial nutrition, continuous deep sedation, and the caregiver's role and gender. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Facilitating change and adaptation: the experiences of current and bereaved carers of patients with severe chronic obstructive pulmonary disease.

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Philip, Jennifer; Gold, Michelle; Brand, Caroline; Miller, Belinda; Douglass, Jo; Sundararajan, Vijaya

2014-04-01

Patients with severe chronic obstructive pulmonary disease (COPD) experience substantial symptom burden, psychological and social morbidity. The experience of this illness has an impact beyond the patient. This study seeks to understand the experiences and needs of family carers of people with severe COPD. Semistructured interviews were held with current and bereaved carers of people with severe COPD. Several areas of content were targeted in the interviews, including the experience of caring for someone with COPD, views of treatment and prognosis, information and communication needs, and the understanding of palliative care. Data were analyzed thematically. The carers' and bereaved carers' experiences and needs around COPD are best understood as a dynamic of change, recognition, and adaptation. Carers faced many changes as the patients' general condition deteriorated. These were changes in the nature of caring tasks, in their relationships, and their own expectations. Carers usually recognized change had happened and sought to adapt through new approaches, new equipment, a new stance of thinking, and in most cases, continued caring. Within this theme of change, recognition, and adaptation were a series of subthemes: (1) the impact of caring, (2) recognizing the role of the carer, and (3) the needs of the carer including their needs from palliative care services. The impact of caring borne by family carers is substantial and life changing. Health professionals may assist carers in their role through acknowledgement, facilitating recognition of the changes that have occurred (and their implications), and enabling creative adaptive responses for carers. Such assistance is likely to enhance the ability of carers to continue in this demanding role.

The views of patients with brain cancer about palliative care: a qualitative study.

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Vierhout, M; Daniels, M; Mazzotta, P; Vlahos, J; Mason, W P; Bernstein, M

2017-12-01

Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting. Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients. Seven overarching actions emerged: ■Patients would prefer to receive palliative care in the home.■Increased time with caregivers and family are the main appeals of home care.■Patients express dissatisfaction with brief and superficial interactions with health care providers.■Patients believe that palliative care can contribute to their emotional well-being.■Patients are open to palliative care if they believe that it will not diminish optimism.■There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.■Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it. Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits.

Perceived Stigma of Sudden Bereavement as a Risk Factor for Suicidal Thoughts and Suicide Attempt: Analysis of British Cross-Sectional Survey Data on 3387 Young Bereaved Adults

Directory of Open Access Journals (Sweden)

Alexandra Pitman

2017-03-01

Full Text Available The sudden death of a friend or relative, particularly by suicide, is a risk factor for suicide. People who experience sudden bereavement report feeling highly stigmatised by the loss, potentially influencing access to support. We assessed whether perceived stigma following sudden bereavement is associated with suicidal thoughts and suicide attempt. We analysed cross-sectional survey data on 3387 young adults bereaved by the sudden death of a close contact. We tested the association of high versus low perceived stigma (on the stigma sub-scale of the Grief Experience Questionnaire with post-bereavement suicidal ideation and suicide attempt, using random effects logistic regression, adjusting for socio-demographic factors, pre-bereavement psychopathology, and mode of sudden bereavement (natural causes/unnatural causes/suicide. Subjects with high perceived stigma scores were significantly more likely to report post-bereavement suicidal thoughts (adjusted odds ratio (AOR = 2.74; 95% confidence interval (CI = 1.93–3.89 and suicide attempt (AOR = 2.73; 95% CI = 2.33–3.18 than those with low stigma scores. People who feel highly stigmatised by a sudden bereavement are at increased risk of suicidal thoughts and suicide attempt, even taking into account prior suicidal behaviour. General practitioners, bereavement counsellors, and others who support people bereaved suddenly, should consider inquiring about perceived stigma, mental wellbeing, and suicidal thoughts, and directing them to appropriate sources of support.

A Nationwide Survey of Quality of End-of-Life Cancer Care in Designated Cancer Centers, Inpatient Palliative Care Units, and Home Hospices in Japan: The J-HOPE Study.

Science.gov (United States)

Miyashita, Mitsunori; Morita, Tatsuya; Sato, Kazuki; Tsuneto, Satoru; Shima, Yasuo

2015-07-01

End-of-life (EOL) cancer care in general hospitals and home care has not previously been evaluated in Japan. This study aimed to evaluate EOL cancer care from the perspective of bereaved family members in nationwide designated cancer centers, inpatient palliative care units (PCUs), and home hospices in Japan. We conducted a cross-sectional, anonymous, self-report questionnaire survey for bereaved family members of cancer patients in March 2008 for 56 designated cancer centers and in June 2007 for 100 PCUs and 14 home hospices. Outcomes were overall care satisfaction, structure and process of care (Care Evaluation Scale), and achievement of a good death (Good Death Inventory). In designated cancer centers, PCUs, and home hospices, 2794 (response rate 59%), 5312 (response rate 69%), and 292 (response rate 67%) bereaved family members participated, respectively. Mean scores for overall care satisfaction were high for all places of death, at 4.3 ± 1.2 for designated cancer centers, 5.0 ± 1.2 for PCUs, and 5.0 ± 1.0 for home hospices. Designated cancer centers showed significantly lower ratings than PCUs and home hospices for structure and process of care and achievement of a good death (P = 0.0001 each). Home hospices were rated significantly higher than PCUs for achievement of a good death (P = 0.0001). The main findings of this study were: (1) overall, bereaved family members were satisfied with end-of-life care in all three places of death; (2) designated cancer centers were inferior to PCUs and home hospices and had more room for improvement; and 3) home hospices were rated higher than PCUs for achieving a good death, although home hospices remain uncommon in Japan. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Educational Needs on Palliative Care for Cancer Patients in Iran: A SWOT Analysis.

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Ansari, Mojgan; Rassouli, Maryam; Akbari, Mohamad Esmaiel; Abbaszadeh, Abbas; Akbari Sari, Ali

2018-04-01

By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder's educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran. This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes. A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included: "academic education planning", "workforce education", "public awareness", and "patient and caregiver empowerment" that contained our subcategories as follows: "strengths", "weaknesses", "opportunities" and "threats" (SWOT). Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced.

Addressing cancer patient and caregiver role transitions during home hospice nursing care.

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Hudson, Janella; Reblin, Maija; Clayton, Margaret F; Ellington, Lee

2018-05-15

Many family caregivers and hospice patients experience role changes resulting from advancing illness and the need for increased caregiver responsibility. Successful navigation of conflicts that arise because of these role transitions has been linked to higher quality of patient care and improved caregiver bereavement adjustment. Nursing communication with patients and their caregivers plays an important role in facilitating these transitions. Our objective is to describe patient-caregiver-nurse communication during transitions at end of life. A secondary, qualitative analysis was conducted on transcripts. Using an iterative process of constant comparison, coders inductively categorized nurse, caregiver, and patient communication behavior into overarching themes. Participants were home hospice nurses and cancer patient/spouse caregiver dyads; participants were >45 years of age, English speaking, and cognitively able to participate. Research took place in the home during nurse visits.ResultNineteen unique home hospice visits were analyzed. Patient-caregiver conflict occurred in two major content themes (1) negotiating transitions in patient independence and (2) navigating caregiver/patient emotions (e.g., frustration, sadness). Nurse responses to transition conflict included problem-solving, mediating, or facilitating discussions about conflicts. Nurse responses to emotional conflict included validation and reassurance.Significance of resultsOur findings provide insight into the topics and processes involved in patient and caregiver transitions in home hospice and the role hospice nursing communication plays in mediating potential conflict. Nurses are often asked to take on the role of mediator, often with little conflict resolution communication education; results can be used for nursing education.

Developing a web-based information resource for palliative care: an action-research inspired approach

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Gliddon Terry

2007-09-01

Full Text Available Abstract Background General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website 1. Method The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197 scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166. Results Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences (clinicians, allied health professionals as well as patients and their caregivers. Conclusion Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to

The impact of spousal bereavement on hospitalisations: Evidence from the Scottish Longitudinal Study.

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Tseng, Fu-Min; Petrie, Dennis; Wang, Shaolin; Macduff, Colin; Stephen, Audrey I

2018-02-01

This paper estimates the impact of spousal bereavement on hospital inpatient use for the surviving bereaved by following the experience of 94,272 married Scottish individuals from 1991 until 2009 using a difference-in-difference model. We also consider the sample selection issues related to differences in survival between the bereaved and non-bereaved using a simple Cox Proportional-Hazard model. Before conducting these estimations, propensity score approaches are used to re-weight the non-bereaved to generate a more random-like comparison sample for the bereaved. We find that those bereaved who survive are both more likely to be admitted and to stay longer in hospital than a comparable non-bereaved cohort. Bereavement is estimated to induce on average an extra 0.24 (95% CI [0.15, 0.33]) hospital inpatient days per year. Similar to previous studies, we estimate the bereaved have a 19.2% (95% CI [12.5%, 26.3%]) higher mortality rate than the comparable non-bereaved cohort. Copyright © 2017 John Wiley & Sons, Ltd.

Humor Assessment and Interventions in Palliative Care: A Systematic Review

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Lisa M. Linge-Dahl

2018-06-01

Full Text Available Background: The central goal of palliative care is to optimize the quality of life of patients suffering from life-limiting illnesses, which includes psychosocial and spiritual wellbeing. Research has demonstrated positive correlations between humor and laughter with life satisfaction and other aspects of wellbeing, and physiological symptoms can be improved by humorous stimuli.Objectives: The aim of this review is to evaluate humor interventions and assessments that have been applied in palliative care and to derive implications for future research.Methods: A systematic review of four databases identified 13 included studies. Criteria for inclusion were peer-reviewed English-language studies on humor interventions or assessments in a palliative care context.Results: Two studies on humor interventions and 11 studies on humor assessment were included in the systematic review. Most of these studies were about the patients' perspective on humor in palliative care. Findings showed that humor had a positive effect on patients, their relatives, and professional caregivers. Humor was widely perceived as appropriate and seen as beneficial to care in all studies.Conclusions: Even though humor interventions seem to be potentially useful in palliative care, descriptions evaluating their use are scarce. Overall, research on humor assessment and interventions in palliative care has remained limited in terms of quantity and quality. More research activities are needed to build a solid empirical foundation for implementing humor and laughter as part of regular palliative care activities.

Measuring comprehensive outcomes in palliative care: validation of the Korean version of the Good Death Inventory.

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Shin, Dong Wook; Choi, JiEun; Miyashita, Mitsunori; Choi, Jin Young; Kang, Jina; Baik, Young Ji; Mo, Ha Na; Choi, Jong Soon; Son, Young Sun; Lee, Hae Sook

2011-10-01

No systematic or comprehensive attempts have yet been made to assess quality of death as an indicator of palliative care outcomes in Korea, and no validated instruments exist for the assessment of a good death in Koreans. This study examined the validity and reliability of the Korean version of the Good Death Inventory (GDI), which was developed in Japan to evaluate the quality of death from the perspective of bereaved family members. Forward and backward translations and a pilot test were conducted. In a multicenter cross-sectional survey, a questionnaire packet, including the GDI, overall quality of life during the last week, and overall satisfaction with care, was mailed to bereaved family members (n=501) of patients who had died from cancer two to six months before the study. Descriptive analyses were performed, including response rate, mean, median, skewness, and kurtosis for each item. The reliability of the GDI was tested by Cronbach's alpha. The dimensional structure was assessed using confirmatory factor analyses. Concurrent validity was tested by correlation with the overall quality of life and overall satisfaction with care. Participants were able to complete the GDI, and the compliance rates were satisfactory. Cronbach's alpha coefficient for internal consistency was 0.93 overall and ranged from 0.69 to 0.94 for subdomains. The hypothesized 18-factor model of a good death appeared to fit the data (goodness of fit index [GFI]=0.964; adjusted GFI index=0.960; normal fit index=0.952). The overall scores on the GDI correlated with patients' quality of life (0.56; P<0.001) and overall satisfaction with care (0.44; P<0.001). The Korean version of the GDI is a reliable and valid measure of the comprehensive outcomes of palliative care from the perspective of bereaved Korean family members. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Issues Faced by Family Caregivers of Hospice Patients with Head and Neck Cancers.

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McMillan, Susan C; Rodriguez, Carmen; Wang, Hsiao-Lan; Elliott, Amanda

2015-01-01

The purpose of this study was to explore issues reported by caregivers of Head and Neck cancer (HNC) patients newly admitted to hospice homecare. 26 caregivers providing hospice homecare to patients with HNC were induded. Caregiver depressive symptoms, social support and perceived health data were analyzed. The caregivers reported few depressive symptoms, good perceived social support, and good perceived health; however, there was large variation in the group with some individuals having significant problems. Caregivers appeared to be doing well physically, emotionally and socially, but baseline data were used, so follow-up data are needed. Further research is warranted. Family caregivers also are affected by the experience of cancer and may have depressive symptoms needing assessment and management. Hospice patients with HNC have a variety of symptoms specific to their disease and treatment that need assessment and management by their family caregivers. Caregivers of HNC patients in hospice and palliative care need and deserve attention from hospice providers as they care for patients.

The role of health care assistants in supporting district nurses and family carers to deliver palliative care at home: findings from an evaluation project.

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Ingleton, Christine; Chatwin, John; Seymour, Jane; Payne, Sheila

2011-07-01

To examine the role of trained health and personal care assistants in supporting district nurses and family carers in providing palliative and end of life care in the community. In the UK, there is a policy directive to improve end of life care and to enable greater numbers of people to die at home. This places considerable demands on community nursing services and family carers. In response to this, the Complex and Palliative Continuing Care Service employing generic health and personal care assistants was developed as part of the Marie Curie Delivering Choice Programme in one city in the UK. This paper draws on findings from an independent evaluation of the scheme. The wider evaluation used a formative evaluation methodology. This paper draws on in-depth interviews with a range of stakeholders (n = 17), in-depth interviews with bereaved carers (n = 6) and an analysis of documentation. Stakeholders and bereaved carers perceived that the health and personal care assistants made a vital contribution to community palliative care. Careful recruitment, specific training, case management by district nursing with allocation of specific tasks and close ongoing communication were key features which stakeholders indentified. Family carers welcomed the way assistants developed relationships and became familiar and able to meet the care needs of patients. There were some problems reported which related to capacity, work flow and the need for extensive written care plans. Employing health care assistants under the supervision of district nurses appears to support patients and family at home during end of life care and contribute to good quality nursing care. The needs for community-based palliative and end of life care will increase rapidly over the course of the next 20 years, placing pressure on community nursing services and family carers. © 2011 Blackwell Publishing Ltd.

Challenges of using methadone in the Indian pain and palliative care practice

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Vidya Viswanath

2018-01-01

Full Text Available Palliative care providers across India lobbied to gain access to methadone for pain relief and this has finally been achieved. Palliative care activists will count on the numerous strengths for introducing methadone in India, including the various national and state government initiatives that have been introduced recognizing the importance of palliative care as a specialty in addition to improving opioid accessibility and training. Adding to the support are the Non-Governmental Organizations (NGOs, the medical fraternity and the international interactive and innovative programs such as the Project Extension for Community Health Outcome. As compelling as the need for methadone is, many challenges await. This article outlines the challenges of procuring methadone and also discusses the challenges specific to methadone. Balancing the availability and diversion in a setting of opioid phobia, implementing the amended laws to improve availability and accessibility in a country with diverse health-care practices are the major challenges in implementing methadone for relief of pain. The unique pharmacology of the drug requires meticulous patient selection, vigilant monitoring, and excellent communication and collaboration with a multidisciplinary team and caregivers. The psychological acceptance of the patient, the professional training of the team and the place where care is provided are also challenges which need to be overcome. These challenges could well be the catalyst for a more diligent and vigilant approach to opioid prescribing practices. Start low, go slow could well be the way forward with caregiver education to prescribe methadone safely in the Indian palliative care setting.

Challenges of Using Methadone in the Indian Pain and Palliative Care Practice.

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Viswanath, Vidya; Palat, Gayatri; Chary, Srini; Broderick, Ann

2018-01-01

Palliative care providers across India lobbied to gain access to methadone for pain relief and this has finally been achieved. Palliative care activists will count on the numerous strengths for introducing methadone in India, including the various national and state government initiatives that have been introduced recognizing the importance of palliative care as a specialty in addition to improving opioid accessibility and training. Adding to the support are the Non-Governmental Organizations (NGOs), the medical fraternity and the international interactive and innovative programs such as the Project Extension for Community Health Outcome. As compelling as the need for methadone is, many challenges await. This article outlines the challenges of procuring methadone and also discusses the challenges specific to methadone. Balancing the availability and diversion in a setting of opioid phobia, implementing the amended laws to improve availability and accessibility in a country with diverse health-care practices are the major challenges in implementing methadone for relief of pain. The unique pharmacology of the drug requires meticulous patient selection, vigilant monitoring, and excellent communication and collaboration with a multidisciplinary team and caregivers. The psychological acceptance of the patient, the professional training of the team and the place where care is provided are also challenges which need to be overcome. These challenges could well be the catalyst for a more diligent and vigilant approach to opioid prescribing practices. Start low, go slow could well be the way forward with caregiver education to prescribe methadone safely in the Indian palliative care setting.

War and bereavement: consequences for mental and physical distress.

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Nexhmedin Morina

Full Text Available BACKGROUND: Little is known about the long-term impact of the killing of a parent in childhood or adolescence during war on distress and disability in young adulthood. This study assessed current prevalence rates of mental disorders and levels of dysfunction among young adults who had lost their father due to war-related violence in childhood or adolescence. METHODS: 179 bereaved young adults and 175 non-bereaved young adults were interviewed a decade after experiencing the war in Kosovo. Prevalence rates of Major Depressive Episode (MDE, anxiety, and substance use disorders, and current suicide risk were assessed using the Mini-International Neuropsychiatric Interview. The syndrome of Prolonged Grief Disorder (PGD was assessed with the Prolonged Grief Disorder Interview (PG-13. Somatic symptoms were measured with the Patient Health Questionnaire. General health distress was assessed with the General Health Questionnaire. FINDINGS: Bereaved participants were significantly more likely to suffer from either MDE or any anxiety disorder than non-bereaved participants (58.7% vs. 40%. Among bereaved participants, 39.7% met criteria for Post-Traumatic Stress Disorder, 34.6% for PGD, and 22.3% for MDE. Bereaved participants with PGD were more likely to suffer from MDE, any anxiety disorder, or current suicide risk than bereaved participants without PGD. Furthermore, these participants reported significantly greater physical distress than bereaved participants without PGD. CONCLUSION: War-related loss during middle childhood and adolescence presents significant risk for adverse mental health and dysfunction in young adulthood in addition to exposure to other war-related traumatic events. Furthermore, the syndrome of PGD can help to identify those with the greatest degree of distress and dysfunction.

Grieving Together and Apart: Bereaved Parents' Contradictions of Marital Interaction

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Toller, Paige W.; Braithwaite, Dawn O.

2009-01-01

The researchers adopted relational dialectics theory (Baxter & Montgomery, 1996) to examine the discourse of 37 bereaved parents. Research questions guiding the study were what dialectical contradictions do bereaved parents experience when communicating with their marital partner after their child's death and how do bereaved parents and their…

Adapting the transtheoretical model of change to the bereavement process.

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Calderwood, Kimberly A

2011-04-01

Theorists currently believe that bereaved people undergo some transformation of self rather than returning to their original state. To advance our understanding of this process, this article presents an adaptation of Prochaska and DiClemente's transtheoretical model of change as it could be applied to the journey that bereaved individuals experience. This theory is unique because it addresses attitudes, intentions, and behavioral processes at each stage; it allows for a focus on a broader range of emotions than just anger and depression; it allows for the recognition of two periods of regression during the bereavement process; and it adds a maintenance stage, which other theories lack. This theory can benefit bereaved individuals directly and through the increased awareness among counselors, family, friends, employers, and society at large. This theory may also be used as a tool for bereavement programs to consider whether they are meeting clients' needs throughout the transformation change bereavement process rather than only focusing on the initial stages characterized by intense emotion.

College student bereavement, scholarship, and the university: a call for university engagement.

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Balk, D E

2001-01-01

The prevalence of bereavement among traditional-aged college students should impel universities to assist bereaved students on their campuses. Dealing with bereavement can not only challenge a college student's completing the developmental tasks that our society sets for the later adolescent years, but also imperil the student's remaining in school and graduating. It is in the best interests of the university to develop and implement a variety of effective interventions to assist bereaved students. The author argues that universities are communities devoted to scholarly endeavors and should explicitly incorporate the dimension of compassion and caring. An abbreviated case study is used to illustrate the situations in which one grieving student found herself when she returned to school following the death of her father. A call is made for greater university engagement by forming a university-based bereavement center to coordinate and conduct coherent inquiry that fulfills the scholarly functions of discovery, application, and instruction. Four specific actions for a bereavement center are to train nonbereaved students to provide peer support, to provide structured interventions for college students at risk of bereavement complications, to raise consciousness about bereavement on the university campus, and to conduct research into various bereavement populations and bereavement topics.

Music therapy perspectives in palliative care education.

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Porchet-Munro, S

1993-01-01

Major strides have been made in expanding the content of professional education in palliative care to include a focus on attitudes which nurture compassionate care as well as on knowledge and skills. However, accessing the emotional spheres--for instance the fear and helplessness of caregivers--remains a challenge. The inclusion of music therapy techniques as a teaching modality, with an emphasis on emotional experience and nonverbal expression, is suggested to address the latter and to enhance affective growth and learning.

Living with loss: middle-aged men face spousal bereavement.

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Daggett, Luann M

2002-05-01

Spousal bereavement is one of the most profoundly disturbing events encountered in the human life span. Research has shown that conjugal bereavement has significant physical and psychological consequences for the surviving spouse. In American culture, men and women experience bereavement in different ways. The author used in-depth interviews in the tradition of phenomenology to collect data from 8 men aged 41 to 54 years who had experienced the death of their spouse within the previous 8 months to 6 years. The research revealed the lived experience of spousal bereavement to be a journey from the realization of irreconcilable loss through themes of responding to the loss and living through the loss toward reclamation and reconstruction of a life.

Palliative care and pediatric surgical oncology.

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Inserra, Alessandro; Narciso, Alessandra; Paolantonio, Guglielmo; Messina, Raffaella; Crocoli, Alessandro

2016-10-01

Survival rate for childhood cancer has increased in recent years, reaching as high as 70% in developed countries compared with 54% for all cancers diagnosed in the 1980s. In the remaining 30%, progression or metastatic disease leads to death and in this framework palliative care has an outstanding role though not well settled in all its facets. In this landscape, surgery has a supportive actor role integrated with other welfare aspects from which are not severable. The definition of surgical palliation has moved from the ancient definition of noncurative surgery to a group of practices performed not to cure but to alleviate an organ dysfunction offering the best quality of life possible in all the aspects of life (pain, dysfunctions, caregivers, psychosocial, etc.). To emphasize this aspect a more modern definition has been introduced: palliative therapy in whose context is comprised not only the care assistance but also the plans of care since the onset of illness, teaching the matter to surgeons in training and share paths. Literature is very poor regarding surgical aspects specifically dedicated and all researches (PubMed, Google Scholar, and Cochrane) with various meshing terms result in a more oncologic and psychosocial effort. Copyright © 2016 Elsevier Inc. All rights reserved.

YouTube as a tool for pain management with informal caregivers of cancer patients: a systematic review.

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Wittenberg-Lyles, Elaine; Parker Oliver, Debra; Demiris, George; Swarz, Jeff; Rendo, Matthew

2014-12-01

Cancer caregivers have information and support needs, especially about cancer pain management. With high Internet use reported among caregivers, YouTube may be an accessible option when looking for information on cancer pain management. The purpose of this study was to explore the availability and characteristics of instructional cancer pain management videos on YouTube and determine to what extent these videos addressed the role of informal caregivers in cancer pain management. A systematic review of videos on YouTube resulting from search terms "pain and cancer," "pain and hospice," and "pain and palliative care" was conducted in May 2013. If the video addressed pain management, was in English, and was instructional, it was coded for the scope and design of instructional content that included caregivers. The search terms yielded 1118 unique videos, and 43 videos met the inclusion criteria. Overall, 63% of videos were viewed 500 times or less, and half of the videos received "like" ratings by viewers. Video instruction was primarily talk without any onscreen action (65%), user-generated amateur video (79%), and had poor quality sources of information. Videos were mainly clinician centered (77%). Although most videos addressed the need for caregiver pain assessment (35%) and caregiver education (23%), few actually addressed specific caregiver pain management barriers. Most videos were primarily directed toward a clinical audience. Future research is necessary to determine if the platform is feasible and beneficial as a support tool for oncology caregivers. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Understanding the bereavement care roles of nurses within acute care: a systematic review.

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Raymond, Anita; Lee, Susan F; Bloomer, Melissa J

2017-07-01

To investigate nurses' roles and responsibilities in providing bereavement care during the care of dying patients within acute care hospitals. Bereavement within acute care hospitals is often sudden, unexpected and managed by nurses who may have limited access to experts. Nurses' roles and experience in the provision of bereavement care can have a significant influence on the subsequent bereavement process for families. Identifying the roles and responsibilities, nurses have in bereavement care will enhance bereavement supports within acute care environments. Mixed-methods systematic review. The review was conducted using the databases Cumulative Index Nursing and Allied Health Literature Plus, Embase, Ovid MEDLINE, PsychINFO, CareSearch and Google Scholar. Included studies published between 2006-2015, identified nurse participants, and the studies were conducted in acute care hospitals. Seven studies met the inclusion criteria, and the research results were extracted and subjected to thematic synthesis. Nurses' role in bereavement care included patient-centred care, family-centred care, advocacy and professional development. Concerns about bereavement roles included competing clinical workload demands, limitations of physical environments in acute care hospitals and the need for further education in bereavement care. Further research is needed to enable more detailed clarification of the roles nurse undertake in bereavement care in acute care hospitals. There is also a need to evaluate the effectiveness of these nursing roles and how these provisions impact on the bereavement process of patients and families. The care provided by acute care nurses to patients and families during end-of-life care is crucial to bereavement. The bereavement roles nurses undertake are not well understood with limited evidence of how these roles are measured. Further education in bereavement care is needed for acute care nurses. © 2016 John Wiley & Sons Ltd.

Alcohol use in the first three years of bereavement: a national representative survey

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Pilling János

2012-01-01

Full Text Available Abstract Background Earlier results concerning alcohol consumption of bereaved persons are contradictory. The aim of the present study was to analyze the relationship between bereavement and alcohol consumption accounting for time and gender differences on a nationally representative sample from Hungary ("Hungarostudy Epidemiological Panel Survey", N = 4457 Methods Drinking characteristics of mourning persons (alcohol consumption, dependence symptoms, and harmful consequences of alcohol use in the first three years of grief were examined among persons between 18-75 years using the Alcohol Use Disorders Identification Test (AUDIT. Results Men bereaved for one year scored higher on two dimensions of AUDIT (dependence symptoms and harmful alcohol use, while men bereaved for two years scored higher on all three dimensions of AUDIT compared to the non-bereaved. The rate of men clinically at-risk concerning alcohol consumption among the non-bereaved is 12.9%, and among men bereaved for one year is 18.4% (a non-significant difference, while 29.8% (p Conclusion Among bereaved men, the risk of alcohol related problems tends to be higher, which can be shown both among men bereaved for one year as well as men bereaved for two years. Considering the higher morbidity and mortality rates of bereaved men, alcohol consumption might play a mediator role. These facts draw attention to the importance of prevention, early recognition, and effective therapy of hazardous drinking in bereaved men.

Promoting resilience among parents and caregivers of children with cancer.

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Rosenberg, Abby R; Baker, K Scott; Syrjala, Karen L; Back, Anthony L; Wolfe, Joanne

2013-06-01

Promoting resilience is an aspect of psychosocial care that affects patient and whole-family well-being. There is little consensus about how to define or promote resilience during and after pediatric cancer. The aims of this study were (1) to review the resilience literature in pediatric cancer settings; (2) to qualitatively ascertain caregiver-reported perceptions of resilience; and (3) to develop an integrative model of fixed and mutable factors of resilience among family members of children with cancer, with the goal of enabling better study and promotion of resilience among pediatric cancer families. The study entailed qualitative analysis of small group interviews with eighteen bereaved parents and family members of children with cancer treated at Seattle Children's Hospital. Small-group interviews were conducted with members of each bereaved family. Participant statements were coded for thematic analysis. An integrative, comprehensive framework was then developed. Caregivers' personal appraisals of the cancer experience and their child's legacy shape their definitions of resilience. Described factors of resilience include baseline characteristics (i.e., inherent traits, prior expectations of cancer), processes that evolve over time (i.e., coping strategies, social support, provider interactions), and psychosocial outcomes (i.e., post-traumatic growth and lack of psychological distress). These elements were used to develop a testable model of resilience among family members of children with cancer. Resilience is a complex construct that may be modifiable. Once validated, the proposed framework will not only serve as a model for clinicians, but may also facilitate the development of interventions aimed at promoting resilience in family members of children with cancer.

A Longitudinal Study of PTSD in the Elderly Bereaved: Prevalence and Predictors

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O'Connor, Maja

2010-01-01

This study aimed to investigate the PTSD-frequency in elderly bereaved people across the first 18 months of bereavement. Additionally, risk factors for the prediction of bereavement outcome in relation to four domains of the bereavement process were investigated. Data was collected via self...... one significant loss (N=276, Mean=70 years). The PTSD-frequency within the sample was high (16%) compared to the control group (4%) and remained stable across time. Individually analyzed each domain was a predictor of PTSD 18 months post loss. Most predictors remained stable across time......, remains so over the first 18 months post bereavement, and underline the importance of further investigation of PTSD in the elderly bereaved....

Educational Needs on Palliative Care for Cancer Patients in Iran: A SWOT Analysis

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Ansari, Mojgan; Rassouli, Maryam; Akbari, Mohamad Esmaiel; Abbaszadeh, Abbas; Akbari Sari, Ali

2018-01-01

ABSTRACT Background: By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder’s educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran. Methods: This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes. Result: A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included: ”academic education planning”, “workforce education”, “public awareness”, and “patient and caregiver empowerment” that contained our subcategories as follows: “strengths”, “weaknesses”, “opportunities” and “threats” (SWOT). Conclusion: Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced. PMID:29607340

Educational Needs on Palliative Care for Cancer Patients in Iran: A SWOT Analysis

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Mojgan Ansari

2018-04-01

Full Text Available Background: By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder’s educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran. Methods: This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes. Result: A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included:”academic education planning”, “workforce education”, “public awareness”, and “patient and caregiver empowerment” that contained our subcategories as follows: “strengths”, “weaknesses”, “opportunities” and “threats” (SWOT. Conclusion: Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced.

Effects on life satisfaction of older adults after child and spouse bereavement.

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Bratt, Anna Sofia; Stenström, Ulf; Rennemark, Mikael

2017-06-01

Few studies have compared the impact of different familial losses on life satisfaction (LS). Furthermore, there is a lack of research on the effect of having lost both a child and a spouse among older adults. A random sample of 1402 individuals, 817 women and 585 men, aged 60-96 years from the Blekinge part of the Swedish National Study of Aging and Care (SNAC-B) participated in this cross-sectional study. The first aim was to compare the effects of child or spouse or both child and spouse bereavement on LS and, the second aim, to investigate if there were gender differences within the bereaved groups. The results showed that having lost a child, spouse or both child and spouse had a negative association with LS, although this effect was small. Having experienced multiple losses did not predict more variance than a single child or spouse loss. Gender differences were found within all the bereaved groups with bereaved men having lower LS than bereaved women. Longer time since the loss was associated with higher LS. Bereaved older adults have somewhat lower LS than non-bereaved and bereaved men seem more affected than bereaved women. Future research needs to address older men´s experiences after the loss of a loved one.

The PAMINO-project: evaluating a primary care-based educational program to improve the quality of life of palliative patients

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Engeser Peter

2007-05-01

Full Text Available Abstract Background The care of palliative patients challenges the health care system in both quantity and quality. Especially the role of primary care givers needs to be strengthened to provide them with the knowledge and the confidence of applying an appropriate end-of-life care to palliative patients. To improve health care services for palliative patients in primary care, interested physicians in and around Heidelberg, Germany, are enabled to participate in the community-based program 'Palliative Medical Initiative North Baden (PAMINO' to improve their knowledge in dealing with palliative patients. The impact of this program on patients' health and quality of life remains to be evaluated. Methods/Design The evaluation of PAMINO is a non-randomized, controlled study. Out of the group of primary care physicians who took part in the PAMINO program, a sample of 45 physicians and their palliative patients will be compared to a sample of palliative patients of 45 physicians who did not take part in the program. Every four weeks for 6 months or until death, patients, physicians, and the patients' family caregivers in both groups answer questions to therapy strategies, quality of life (QLQ-C15-PAL, POS, pain (VAS, and burden for family caregivers (BSFC. The inclusion of physicians and patients in the study starts in March 2007. Discussion Although participating physicians value the increase in knowledge they receive from PAMINO, the effects on patients remain unclear. If the evaluation reveals a clear benefit for patients' quality of life, a larger-scale implementation of the program is considered. Trial registration: The study was registered at ‘current controlled trials (CCT’, registration number: ISRCTN78021852.

When LVAD Patients Die: The Caregiver's Mourning.

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Rossi Ferrario, Silvia; Omarini, Pierangela; Cerutti, Paola; Balestroni, Giangluigi; Omarini, Giovanna; Pistono, Massimo

2016-05-01

Left ventricular assist devices (LVADs) have progressively evolved, particularly in the last 10 years, to serve patients affected by severe heart failure as a bridge to transplant or destination therapy. The survival rate and quality of life of pre- and postimplant patients, as well as caregivers' perceptions and distress, are under investigation by the scientific community. But what caregivers think and feel after the loss of their loved one has not so far been examined. We contacted 16 principal caregivers of deceased LVAD patients by telephone. They were asked to evaluate their experience with LVADs and were administered a specific questionnaire about their mourning, the Caregiver Mourning Questionnaire (CMQ), to evaluate their perceptions of the physical, emotional, and social support-related problems that they had experienced during the previous 3 months. Positive aspects reported by the caregivers were the patient's overall subjective well-being and increased survival. Negative aspects were the difficulty to manage infections and the driveline, and the incomplete autonomy of the patient. Half of the caregivers reported not being preadvised about many of the problems they would face. The CMQ revealed that numerous caregivers had health problems, difficulty in sleeping, eating disorders, lack of energy, and loneliness. Use of psychotropic drugs and regrets about how they assisted their loved one also emerged. In conclusion, caregivers of LVAD patients may experience complicated mourning. Our data support in particular the need for an early intervention of palliative care which could prevent or reduce complicated mourning. Copyright © 2015 International Center for Artificial Organs and Transplantation and Wiley Periodicals, Inc.

Impact of caregivers' unmet needs for supportive care on quality of terminal cancer care delivered and caregiver's workforce performance.

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Park, Sang Min; Kim, Young Jin; Kim, Samyong; Choi, Jong Soo; Lim, Ho-Yeong; Choi, Youn Seon; Hong, Young Seon; Kim, Si-Young; Heo, Dae Seog; Kang, Ki Moon; Jeong, Hyun Sik; Lee, Chang Geol; Moon, Do Ho; Choi, Jin-Young; Kong, In Sik; Yun, Young Ho

2010-06-01

Family caregivers play an important role in caring for cancer patients, but the impact of caregivers' unmet needs on the quality of end-of-life (EOL) care they deliver and on their workplace performance are less understood. We identified 1,662 family caregivers of cancer patients who had died at any of 17 hospitals in Korea during 2004. The caregivers answered a telephone questionnaire about needs that were not met when they delivered terminal cancer care and how those unmet their needs affected their workplace performance; they also answered the Quality Care Questionnaire-End of Life (QCQ-EOL). Compared with caregivers who did not have unmet needs, caregivers who had unmet needs for symptom management, financial support, or community support showed poorer QCQ-EOL scores (P < 0.01). Caregivers who had unmet needs for financial support (adjusted odds ratio (aOR) = 7.55; 95% confidential interval (CI) 3.80-15.00), psychosocial support (aOR = 6.24; 95% CI 2.95-13.05), symptom management (aOR = 3.21; 95% CI 2.26-4.54), community support (aOR = 3.82; 95% CI 2.38-6.11), or religious support (aOR = 4.55; 95% CI 1.84-11.26) were more likely to experience work limitations. Caregivers of patients receiving conventional hospital care were more likely to have unmet needs for symptom management (aOR = 1.21; 95% CI 1.00-1.47), psychosocial support (aOR = 1.99; 95% CI 1.37-2.88), and religious support (aOR = 1.73; 95% CI 1.08-2.78) than those of patients receiving palliative hospice care. Caregivers' unmet needs negatively affected both the quality of EOL care they delivered and their workplace performance. More investment in caregiver support and public policies that meet caregiver needs are needed, and hospice use should be encouraged.

Informing social work practice through research with parent caregivers of a child with a life-limiting illness.

Science.gov (United States)

Cadell, Susan; Kennedy, Kimberly; Hemsworth, David

2012-01-01

Pediatric palliative care is an evolving field of practice in social work. As such, research plays a critical role in informing best social work practices in this area. For parents, caring for a child with a life-limiting illness (LLI) is a stressful experience that compounds the usual challenges of parenting. The negative aspects of caring for a child with an LLI are well documented. In the face of such adversity, parent caregivers can also experience positive changes caring for children with even the most serious conditions. This article presents results from a research study of posttraumatic growth in parents who are caring for a child with a LLI. Using mixed methods, two overarching themes were prominent in both the quantitative and qualitative data. The first describes stress related to financial burden associated with caregiving. The second theme concerns the posttraumatic growth experienced by the parent caregivers. The quantitative and qualitative data have been woven together to underscore issues and parental perspectives related to these two themes. This provides a unique and important platform for parent caregivers' experiences that can inform the work of social workers and other pediatric palliative care professionals.

Guilt in bereavement: a review and conceptual framework.

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Li, Jie; Stroebe, Margaret; Chan, Cecilia L W; Chow, Amy Y M

2014-01-01

Thirty-four quantitative and 9 qualitative studies are reviewed to indicate current understanding of the nature and impact of guilt in bereavement. This overview suggests that guilt is especially prevalent among some vulnerable subgroups, and it is associated with maladaptive health outcomes. Being male, longer bereavement time, and good end-of life experience seem to be associated with less guilt feelings. However, definition ambiguity, measurement difficulties, and cultural insensitivity are evident in studies. Therefore, a multidimensional conceptualization of guilt and a structural model to guide future investigation of this phenomenon in the bereavement context is proposed.

Differences between early and late involvement of palliative home care in oncology care: A focus group study with palliative home care teams.

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Dhollander, Naomi; Deliens, Luc; Van Belle, Simon; De Vleminck, Aline; Pardon, Koen

2018-05-01

To date, no randomised controlled trials on the integration of specialised palliative home care into oncology care have been identified. Information on whether existing models of integrated care are applicable to the home care system and how working procedures and skills of the palliative care teams might require adaptation is missing. To gain insight into differences between early and late involvement and the effect on existing working procedures and skills as perceived by palliative home care teams. Qualitative study - focus group interviews. Six palliative home care teams in Flanders, Belgium. Participants included physicians, nurses and psychologists. Differences were found concerning (1) reasons for initiation, (2) planning of care process, (3) focus on future goals versus problems, (4) opportunity to provide holistic care, (5) empowerment of patients and (6) empowerment of professional caregivers. A shift from a medical approach to a more holistic approach is the most noticeable. Being involved earlier also results in a more structured follow-up and in empowering the patient to be part of the decision-making process. Early involvement creates the need for transmural collaboration, which leads to the teams taking on more supporting and coordinating tasks. Being involved earlier leads to different tasks and working procedures and to the need for transmural collaboration. Future research might focus on the development of an intervention model for the early integration of palliative home care into oncology care. To develop this model, components of existing models might need to be adapted or extended.

What's the diagnosis? Organisational culture and palliative care delivery in residential aged care in New Zealand.

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Frey, Rosemary; Boyd, Michal; Foster, Sue; Robinson, Jackie; Gott, Merryn

2016-07-01

Organisational culture has been shown to impact on resident outcomes in residential aged care (RAC). This is particularly important given the growing number of residents with high palliative care needs. The study described herein (conducted from January 2013 to March 2014) examined survey results from a convenience sample of 46 managers, alongside interviews with a purposively selected sample of 23 bereaved family members in order to explore the perceptions of organisational culture within New Zealand RAC facilities in one large urban District Health Board. Results of the Organisational Culture Assessment Instrument (OCAI) completed by managers indicated a preference for a 'Clan' and the structured 'Hierarchy' culture. Bereaved family interviews emphasised both positive and negative aspects of communication, leadership and teamwork, and relationship with residents. Study results from both managers' OCAI survey scores and next of kin interviews indicate that while the RAC facilities are culturally oriented towards providing quality care for residents, they may face barriers to adopting organisational processes supportive of this goal. © 2015 John Wiley & Sons Ltd.

Effects of Methicillin-Resistant Staphylococcus aureus/Multiresistant Gram-Negative Bacteria Colonization or Infection and Isolation Measures in End of Life on Family Caregivers: Results of a Qualitative Study.

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Heckel, Maria; Sturm, Alexander; Herbst, Franziska A; Ostgathe, Christoph; Stiel, Stephanie

2017-03-01

Little is known about the experiences of family caregivers of hospitalized patients with confirmed methicillin-resistant Staphylococcus aureus/multiresistant gram-negative bacteria (MRSA/MRGN) diagnosis at the end of life. The study at hand is a subproject of an interdisciplinary cooperation project that aims at developing a patient-, family-, and team-centered approach in dealing with MRSA/MRGN-positive hospitalized patients in palliative and geriatric care. The present study aimed to assess the individual effects of the patient's MRSA/MRGN colonization or infection and isolation measures on family caregivers. Between April 2014 and September 2015, all known family caregivers associated with an MRSA/MRGN-positive patient from a palliative care unit, a hospital palliative care support team, and a geriatric ward were considered for study participation. A qualitative interview study with family caregivers and an additional focus group was conducted. Data were analyzed using the principles of Grounded Theory. Family caregivers (N = 62) raised suggestions regarding the provision of information and communication on the MRSA/MRGN diagnosis and hygiene measures from staff members and the consistency of hygiene procedures. Family caregivers requested not to be stigmatized or being disadvantaged due to the MRSA/MRGN diagnosis of the patient, and they wished to receive psychosocial and emotional support. Staff members and institutional stakeholders should be aware that family caregivers might be burdened and upset by positive MRSA/MRGN diagnosis and the required hygiene measures. The need for detailed and understandable information on MRSA/MRGN, adequate communication between staff members and family caregivers, and support for family caregivers should be of special attention in particular in end-of-life care.

Belief in Afterlife as a Buffer in Suicidal and Other Bereavement.

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Smith, Peggy C.; And Others

1992-01-01

Examined belief in afterlife and bereavement recovery following death by suicide, homicide, accident, or natural causes. Bereaved persons (n=121) completed scales measuring belief in afterlife, impact of event, perceived recovery, spiritual well-being, emotional pain, and social support. Feeling of recovery following bereavement appeared enhanced…

College Students' Grief and Coping Strategies in Bereavement and Separation

OpenAIRE

Nakajima, Naomi; Kodama, Kenichi

2013-01-01

The purposes of this study are to clarify the characteristics of college students' bereavement and separation and the relationship between coping strategies and grief reactions in bereavement and separation. 212 college students completed questionnaires. The results indicated that the majority of the respondents have experienced some bereavement or separation, in particular, separation from the lover. Multiple regression analyses showed that coping strategies such as "avoidance", "abandonment...

Valuing Attributes of Home Palliative Care With Service Users: A Pilot Discrete Choice Experiment.

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Gomes, Barbara; de Brito, Maja; Sarmento, Vera P; Yi, Deokhee; Soares, Duarte; Fernandes, Jacinta; Fonseca, Bruno; Gonçalves, Edna; Ferreira, Pedro L; Higginson, Irene J

2017-12-01

Discrete choice experiment (DCE) is a quantitative method that helps determine which service attributes are most valued by people and consequently improve their well-being. The objective of this study was to test a new DCE on home palliative care (HPC). Cross-sectional survey using the DCE method with adult patients and their family caregivers, users of three HPC services in Portugal. Service attributes were based on a Cochrane review, a meta-ethnography, and the few existing DCEs on HPC: 1) team's availability, 2) support for family caregivers, 3) homecare support, 4) information and planning, and 5) waiting time. The experimental design consisted in three blocks of eight choice sets where participants chose between two service alternatives that combined different levels of each attribute. We piloted the DCE using cognitive interviewing. Interviews were analyzed for difficulties using Tourangeau's model of information processing. The DCE was conducted with 21 participants of 37 eligible (10 patients with median Palliative Performance Scale score = 45, 11 caregivers). Most participants found the DCE easy (median 2 from 1 to 5), although two patients did not finish the exercise. Key difficulties related to comprehension (e.g., waiting time sometimes understood as response time for visit instead of time from referral to care start) and judgment (e.g., indecision due to similar service alternatives). The DCE method is feasible and acceptable but not all patients are able to participate. In the main study phase, we will give more attention to the explanation of the waiting time attribute. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers.

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Kaub-Wittemer, Dagmar; Steinbüchel, Nicole von; Wasner, Maria; Laier-Groeneveld, Gerhard; Borasio, Gian Domenico

2003-10-01

Non-invasive ventilation (NIV) is an efficient palliative measure for symptoms of chronic hypoventilation in patients with amyotrophic lateral sclerosis (ALS), and can also lengthen survival. A subset of ALS patients undergoes tracheostomy ventilation (TV) for life prolongation. We investigated the quality of life (QOL) and psychosocial situation of 52 home ventilated ALS patients and their caregivers. The battery included sociodemographic, generic, and disease-specific variables, as well as the Profile of Mood States and the Munich Quality of Life Dimensions List. Data were compared between the NIV (n=32) and the TV (n=21) groups. Mean ventilation time was 14 months for NIV and 35 months for TV. Eighty-one percent of TV patients had been tracheotomized without informed consent. The data show a good overall QOL for both NIV and TV patients, but a very high burden of care for TV caregivers, 30% of whom rated their own QOL lower than their patient's QOL. Sexuality was an important issue. Thus, any assessment of QOL in a home palliative care situation should include the primary caregivers.

A Favorable Course of Palliative Sedation: Searching for Indicators Using Caregivers' Perspectives

NARCIS (Netherlands)

Brinkkemper, T.; Rietjens, J.A.C.; Deliens, L.; Ribbe, M.W.; Swart, S.J.; Loer, S.A.; Zuurmond, W.W.A.; Perez, R.S.G.M.

2015-01-01

Objective:Comparing characteristics of a favorable sedation course during palliative sedation to a less favorable course based on the reports Dutch physicians and nurses.Results:Cases identified as having a favorable sedation course less often concerned a male patient (P = .019 nurses' cases),

The impact of personal loss on the experience of health professions: graduate students in end-of-life and bereavement care.

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Supiano, Katherine P; Vaughn-Cole, Beth

2011-01-01

This study explored the impact of prior personal experience with grief on self-reported personal and professional development of graduate students in nursing, social work, counseling, pastoral care, and genetic counseling involved as cofacilitators in bereavement support groups, and of medical students observing interdisciplinary inpatient palliative care. Personal experience with death of a family member or close friend was reported in 80% of the 35 participating students. Findings suggest that grief and the students' construction of the meaning of their loss can mediate the students' developing sense of self as a professional helper. Active engagement with suffering persons, the opportunity for self-disclosure and reflection, and teacher-facilitator provision of emotional guidance and modeling contributed positively to learning.

Adverse outcomes in bereaved mothers: The importance of household income and education

Directory of Open Access Journals (Sweden)

Joanne Cacciatore

2016-12-01

Full Text Available Intense and enduring psychological distress has been well-documented in numerous studies on bereaved parents including anxious, depressive, and traumatic stress symptoms. A state of poverty is also known to increase the risk of psychological distress in the general population, yet this variable has not yet been sufficiently evaluated in outcomes specifically for bereaved parents. This study is the first to investigate poverty, education, and parental bereavement while examining the relative risk of other variables as informed by the literature. The findings reveal that poverty was the strongest predictor of psychological distress when compared to others factors which have traditionally been considered significant in parental bereavement. Bereaved parents living in poverty may be less likely to seek support and have fewer available resources. Practice and policy implications are discussed. Keywords: Poverty, Deprivation, Bereavement, Trauma, Grief, Anxiety, Depression

Humor, Laughter & Happiness in the Daily Lives of Recently Bereaved Spouses

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Lund, Dale A.; Utz, Rebecca; Caserta, Michael S.; de Vries, Brian

2008-01-01

The positive psychology movement has created more interest in examining the potential value of experiencing positive emotions (e.g. humor, laughter and happiness) during the course of bereavement. This study of 292 recently widowed (5-24 weeks) men (39%) and women (61%) age 50 and over examined both the perceived importance of and actual experience of having positive emotions in their daily lives and how they might impact bereavement adjustments. We found that most of the bereaved spouses rated humor and happiness as being very important in their daily lives and that they were also experiencing these emotions at higher levels than expected. Experiencing humor, laughter and happiness was strongly associated with favorable bereavement adjustments (lower grief and depression) regardless of the extent to which the bereaved person valued having these positive emotions. PMID:19227000

Maternal bereavement and cryptorchidism in offspring

DEFF Research Database (Denmark)

Ingstrup, Katja Glejsted; Olsen, Jørn; Wu, Chunsen

2015-01-01

BACKGROUND: Cryptorchidism (undescended testis) is a common anomaly with largely unexplained etiology. Animal studies have suggested maternal emotional stress as a potential risk factor, but this has not been studied in humans. We aimed to investigate whether maternal bereavement due to the death...... interval = 0.92-1.14]). Results were similar when the diagnosis was verified with surgery. We adjusted for maternal and paternal age, birth year, and family history of cryptorchidism. CONCLUSION: We observed no association between maternal bereavement before and during pregnancy and the occurrence...

Childhood bereavement services: a survey of UK provision.

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Rolls, L; Payne, S

2003-07-01

The purpose of the study was to identify the location, range and type of childhood bereavement service provision in the UK. A questionnaire was mailed to 127 services who were either solely dedicated to childhood bereavement or who offered a service within the range of work of a host organization and for which there was a supporting organizational structure. Responses were received from 108 services (a response rate of 85%). The findings identified that 85% of childhood bereavement services are located in the voluntary sector; 14% are dedicated childhood bereavement services, while 86% are offered as part of a host organization. Forty-four per cent of host organizations are hospices. The majority of services (73%) relied on both paid and unpaid staff, with 11% relying entirely on paid staff and 14% of services relying entirely on unpaid staff. The interventions offered ranged from individual family work (86%), individual child work (62%), groupwork with families (53%) and groupwork with children (45%). In addition, services offered prebereavement support (64%), a 'drop-in' service (17%), information and advice (95%), training (32%) and the provision of resources (88%). As well as offering a service to children and their families, 74% of childhood bereavement services provided a service to 'secondary users', such as schools (66%), the emergency services (28%) and other professionals (63%). In terms of funding, 12% of services relied solely on external sources of funding, including donations, legacies, revenue from the host organization or grants, while 12% of services relied solely on internal sources of funding, including fundraising and training. The majority of services (73%), however, gained income from a range of sources. The study identifies the diversity of provision that has implications for the evaluation of childhood bereavement services.

Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients.

Science.gov (United States)

Ullrich, Anneke; Ascherfeld, Lilian; Marx, Gabriella; Bokemeyer, Carsten; Bergelt, Corinna; Oechsle, Karin

2017-05-10

This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey. During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient's admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions. FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for "bodily pain", FCs' quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80-83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3). This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs' satisfaction with SIPC seemed to be high. A current multicenter study evaluates these findings longitudinally in a large cohort of FCs.

Spiritual perspectives and practices at the end-of-life: A review of the major world religions and application to palliative care

Directory of Open Access Journals (Sweden)

Bauer-Wu S

2007-01-01

Full Text Available Palliative care professionals promote well-being and ease suffering at the end-of-life through holistic care that addresses physical, emotional, social and spiritual needs. The ways that individuals cope with serious illness and prepare for death are often done so within a religious context. Therefore, it is essential that palliative care practitioners are sensitive to and have an appreciation of different religious perspectives and rituals to meet the unique needs of their patients and families. This paper provides a brief overview of the five major world religions - Buddhism, Christianity, Hinduism, Islam and Judaism - with particular emphasis of the respective perspectives on suffering, death and afterlife. Despite wide variation in these traditions, an understanding of common rituals surrounding death, funerals and bereavement can improve care for patients, families and communities facing the end-of-life.

Water immersion in neonatal bereavement photography.

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Duffey, Heather

2014-01-01

Water immersion in neonatal bereavement photography is a new technique intended to enhance the quality of the photographs provided to families following their loss. Water immersion appears to be most helpful following a second trimester fetal demise. This technique can be used by nurses, professional photographers and others in addition to more traditional neonatal bereavement photography. It does not require special skills or equipment and can be implemented in virtually any perinatal setting. The enhanced quality of photographs produced with this method can potentially provide a source of comfort to grieving families. © 2014 AWHONN.

Survey of Bereaved Relatives: VOICES MaJam

LENUS (Irish Health Repository)

2017-06-01

The report presents findings and recommendations from the largest survey of bereaved relatives undertaken by two adult acute hospitals in Ireland in conjunction with their academic partners TCD and UCD. The findings provide significant insight into the quality of care delivered at end of life from the perspective of bereaved relatives. This report will be of interest to all healthcare staff involved in improving end-of-life care in acute hospitals and other healthcare settings.

Trajectories of caregiver burden in families of adult cystic fibrosis patients.

Science.gov (United States)

Wojtaszczyk, Ann; Glajchen, Myra; Portenoy, Russell K; Berdella, Maria; Walker, Patricia; Barrett, Malcolm; Chen, Jack; Plachta, Amy; Balzano, Julie; Fresenius, Ashley; Wilder, Kenya; Langfelder-Schwind, Elinor; Dhingra, Lara

2017-10-17

Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time. Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time. Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.

Search for a cure: narratives of Thai family caregivers living with a person with AIDS.

Science.gov (United States)

Nilmanat, Kittikorn; Street, Annette

2004-09-01

Facing an incurable prognosis Thai families search for a cure for AIDS using all possible means available to them. This paper reports a longitudinal narrative case study of eight family caregivers caring for a relative with AIDS in rural Southern Thailand. The paper demonstrates how the caregivers living with a person with AIDS made sense of illness episodes, and how they chose and evaluated particular treatments and care. Caregivers moved between modern medicine, traditional/folk medicine, supernatural healing rites, religious performances, and home remedies in their search for a cure. The findings indicate that a more holistic and palliative approach is needed toward AIDS care.

Palliative care in the home: a scoping review of study quality, primary outcomes, and thematic component analysis.

Science.gov (United States)

Hofmeister, Mark; Memedovich, Ally; Dowsett, Laura E; Sevick, Laura; McCarron, Tamara; Spackman, Eldon; Stafinski, Tania; Menon, Devidas; Noseworthy, Tom; Clement, Fiona

2018-03-07

The aim of palliative care is to improve the quality of life of patients and families through the prevention and relief of suffering. Frequently, patients may choose to receive palliative care in the home. The objective of this paper is to summarize the quality and primary outcomes measured within the palliative care in the home literature. This will synthesize the current state of the literature and inform future work. A scoping review was completed using PRISMA guidelines. PubMed, Embase, CINAHL, Web of Science, Cochrane Library, EconLit, PsycINFO, Centre for Reviews and Dissemination, Database of Abstracts of Reviews of Effects, and National Health Service Economic Evaluation Database were searched from inception to August 2016. Inclusion criteria included: 1) care was provided in the "home of the patient" as defined by the study, 2) outcomes were reported, and 3) reported original data. Thematic component analysis was completed to categorize interventions. Fifty-three studies formed the final data set. The literature varied extensively. Five themes were identified: accessibility of healthcare, caregiver support, individualized patient centered care, multidisciplinary care provision, and quality improvement. Primary outcomes were resource use, symptom burden, quality of life, satisfaction, caregiver distress, place of death, cost analysis, or described experiences. The majority of studies were of moderate or unclear quality. There is robust literature of varying quality, assessing different components of palliative care in the home interventions, and measuring different outcomes. To be meaningful to patients, these interventions need to be consistently evaluated with outcomes that matter to patients. Future research could focus on reaching a consensus for outcomes to evaluate palliative care in the home interventions.

Cultural perspectives of death, grief, and bereavement.

Science.gov (United States)

Clements, Paul T; Vigil, Gloria J; Manno, Martin S; Henry, Gloria C; Wilks, Jonathan; Das Sarthak; Kellywood, Rosie; Foster, Wil

2003-07-01

The cultural makeup of the United States continues to change rapidly, and as minority groups continue to grow, these groups' beliefs and customs must be taken into account when examining death, grief, and bereavement. This article discusses the beliefs, customs, and rituals of Latino, African American, Navajo, Jewish, and Hindu groups to raise awareness of the differences health care professionals may encounter among their grieving clients. Discussion of this small sample of minority groups in the United States is not intended to cover all of the degrees of acculturation within each group. Cultural groups are not homogeneous, and individual variation must always be considered in situations of death, grief, and bereavement. However, because the customs, rituals, and beliefs of the groups to which they belong affect individuals' experiences of death, grief, and bereavement, health care professionals need to be open to learning about them to better understand and help.

Fatigue in family caregivers of adult intensive care unit survivors.

Science.gov (United States)

Choi, JiYeon; Tate, Judith A; Hoffman, Leslie A; Schulz, Richard; Ren, Dianxu; Donahoe, Michael P; Given, Barbara A; Sherwood, Paula R

2014-09-01

Family caregivers are a vital resource in the recovery of intensive care unit (ICU) survivors. Of concern, the stress associated with this role can negatively affect caregiver health. Fatigue, an important health indicator, has been identified as a predictor of various illnesses, greater use of health services, and early mortality. Examining the impact of fatigue on caregivers' physical health can assist in identifying critical time points and potential targets for intervention. To describe self-reported fatigue in caregivers of ICU survivors from patients' ICU admission to ≤ 2 weeks, two- and four-months post-ICU discharge. Patient-caregiver pairs were enrolled from a medical ICU. Caregiver fatigue was measured using the Short-Form 36 Health Survey Vitality subscale (SF-36 Vitality). Caregiver psychobehavioral stress responses included depressive symptoms, burden, health risk behaviors, and sleep quality. Patient data included self-reported physical symptoms and disposition (home vs. institution). Forty-seven patient-caregiver pairs were initially enrolled. Clinically significant fatigue (SF-36 Vitality ≤ 45) was reported by 43%-53% of caregivers across the time points, and these caregivers reported worse scores in measures of depressive symptoms, burden, health risk behaviors and sleep quality, and patients' symptom burden. In 26 caregivers with data for all time points (55% of the total sample), SF-36 Vitality scores showed trends of improvement when the patient returned home and greater impairment when institutionalization continued. In caregivers of ICU survivors, fatigue is common and potentially linked with poor psychobehavioral responses. Worsening fatigue was associated with greater symptom distress and long-term patient institutionalization. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

The social relations of bereavement in the Caribbean.

Science.gov (United States)

Marshall, Ronald; Sutherland, Patsy

2008-01-01

The objectives of this article are to discuss the various types of behaviors associated with grief and bereavement, and to examine the relationships, consequences, and outcomes of bereavement practices among the various religious and ethnic groups in the English-speaking Caribbean Islands of Jamaica, Trinidad, Grenada, and Barbados. The rituals associated with death and grief differs across cultures and is greatly influenced by religious beliefs and traditions. How these rituals are played out depend on the culture of origin and level of acculturation of the various groups into mainstream society. In the Caribbean region, expressions of grief represent religious and cultural traditions that may have a significant impact on social relations, particularly in multi-ethnic and multicultural societies. In the English-speaking Caribbean Islands of Jamaica, Trinidad, Grenada, and Barbados, mourning follows the patterns of traditional religious practices which have remained consistent over time. While families and friends may offer social support before and after burial or cremation, the social aspects of bereavement may also have implications for inter-group relations. Insights into bereavement practices and what it holds for ethnic and religious groups in contemporary Caribbean are presented.

Bereaved children.

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Schultz, K.

1999-01-01

OBJECTIVE: To describe the unique aspects of childhood grief. To provide a framework for family physicians to use in assisting children to grieve. QUALITY OF EVIDENCE: A MEDLINE search from 1966 to 1999 using the key words children, childhood, grief, mourning, and bereavement revealed mainly expert opinion articles, some non-randomized observational studies, and retrospective case-control studies. MAIN MESSAGE: Although children are influenced by similar factors and need to work through the s...

Mutual partners' support in the process of the bereavement after the death of the child

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Polona Ozbič

2015-08-01

Full Text Available The death of a close person is one of the hardest situations which individuals face several times in their lifetimes. The death of a child is especially stressful. The partnership can be either mutually supportive or stressful; this is significantly related to coping with the loss. The purpose of the research was to study the mutual support of partners while grieving their child's loss. We conducted in-depth guided interviews with fourteen bereaved parents. We used a grounded theory to determine three main topics: the expectations of the bereaved from their partner; the characteristics of the mutual partners' support; and the relationship between partners in the process of bereavement. On the basis of these data the following categories prevailed: collective bereavement, individual bereavement with occasional collective bereavement, and isolated bereavement. Regardless of gender, the individuals with the first two patterns typically experience mutual understanding and the feeling of support in the process of bereavement. Those with the pattern of isolated bereavement have characteristically dysfunctional partnerships, which make mutual support difficult even when desired. Research showed a new finding in Slovenia: bereaved parents in functional partnerships often grieve individually and occasionally collectively, which they identify as adequate mutual support.

Benefit or Harm? A study on impact of collusion on the quality of life among palliative care patients

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Anju Victor

2018-01-01

Full Text Available Background: In India, roughly one-half of patients undergoing cancer treatment are unaware of their diagnosis or treatment. The intention of this study is to determine the prevalence of collusion and its influence on quality of life (QOL among patients in palliative care settings. Methodology: A cross-sectional study was conducted among 100 palliative care patients to assess the extent of knowledge about their diagnosis and prognosis. The caretakers and the treating doctors were interviewed using a semi-structured questionnaire to assess if diagnosis was revealed to a patient. QOL of the patients was assessed using the European Organisation for Research and Treatment of Cancer QOL Questionnaire-C30 questionnaire. Results: The prevalence of collusion was 37%, i.e., in more than one-third of the palliative care patients; caregivers restrained doctors from disclosing the diagnosis. The prevalence of collusion was less among patients with higher educational qualification (P = 0.027 and professionals (P = 0.025. Collusion was not associated with gender, type of family, place of residence, and socioeconomic status (SES. In multivariate regression, collusion (odds ratio = 10.53 was independently associated with poor QOL when adjusted for age, gender, place of residence, religion, educational status, family type, and SES. Conclusion: Collusion is fairly prevalent and it worsens the QOL among cancer patients. Since the main driver for collusion is the strong desire among caregivers to protect the physical and psychological well-being, the findings of the study could motivate the caregiver for a more open and honest communication.

Intensive care bereavement practices across New Zealand and Australian intensive care units: a qualitative content analysis.

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Coombs, Maureen; Mitchell, Marion; James, Stephen; Wetzig, Krista

2017-10-01

End-of-life and bereavement care is an important consideration in intensive care. This study describes the type of bereavement care provided in intensive care units across Australia and New Zealand. Inductive qualitative content analysis was conducted on free-text responses to a web-based survey exploring unit-based bereavement practice distributed to nurse managers in 229 intensive care units in New Zealand and Australia. A total of 153 (67%) surveys were returned with 68 respondents making free-text responses. Respondents were mainly Australian (n = 54, 85·3%), from the public sector (n = 51, 75%) and holding Nurse Unit Managers/Charge Nurse roles (n = 39, 52·9%). From the 124 free-text responses, a total of 187 individual codes were identified focussing on bereavement care practices (n = 145, 77·5%), educational provision to support staff (n = 15, 8%) and organisational challenges (n = 27, 14·4%). Bereavement care practices described use of memory boxes, cultural specificity, annual memorial services and use of community support services. Educational provision identified local in-service programmes, and national bereavement courses for specialist bereavement nurse coordinators. Organisational challenges focussed on lack of funding, especially for provision of bereavement follow-up. This is the first Australasian-wide survey, and one of the few international studies, describing bereavement practices within intensive care, an important aspect of nursing practice. However, with funding for new bereavement services and education for staff lacking, there are continued challenges in developing bereavement care. Given knowledge about the impact of these areas of care on bereaved family members, this requires review. Nurses remain committed to supporting bereaved families during and following death in intensive care. With limited resource to support bereavement care, intensive care nurses undertake a range of bereavement care practices at time of death

Development of a Web-Based Intervention for Addressing Distress in Caregivers of Patients Receiving Stem Cell Transplants: Formative Evaluation With Qualitative Interviews and Focus Groups

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Pensak, Nicole Amoyal; Joshi, Tanisha; Simoneau, Teresa; Kilbourn, Kristin; Carr, Alaina; Kutner, Jean; Laudenslager, Mark L

2017-06-22

Caregivers of cancer patients experience significant burden and distress including depression and anxiety. We previously demonstrated the efficacy of an eight session, in-person, one-on-one stress management intervention to reduce distress in caregivers of patients receiving allogeneic hematopoietic stem cell transplants (allo-HSCT). The objective of this study was to adapt and enhance the in-person caregiver stress management intervention to a mobilized website (eg, tablet, smartphone, or computer-based) for self-delivery in order to enhance dissemination to caregiver populations most in need. We used an established approach for development of a mhealth intervention, completing the first two research and evaluation steps: Step One: Formative Research (eg, expert and stakeholder review from patients, caregivers, and palliative care experts) and Step Two: Pretesting (eg, Focus Groups and Individual Interviews with caregivers of patients with autologous HSCT (auto-HSCT). Step one included feedback elicited for a mock-up version of Pep-Pal session one from caregiver, patients and clinician stakeholders from a multidisciplinary palliative care team (N=9 caregivers and patient stakeholders and N=20 palliative care experts). Step two included two focus groups (N=6 caregivers) and individual interviews (N=9 caregivers) regarding Pep-Pal's look and feel, content, acceptability, and potential usability/feasibility. Focus groups and individual interviews were audio-recorded. In addition, individual interviews were transcribed, and applied thematic analysis was conducted in order to gain an in-depth understanding to inform the development and refinement of the mobilized caregiver stress management intervention, Pep-Pal (PsychoEducation and skills for Patient caregivers). Overall, results were favorable. Pep-Pal was deemed acceptable for caregivers of patients receiving an auto-HSCT. The refined Pep-Pal program consisted of 9 sessions (Introduction to Stress, Stress and the

Long-term effects of the Family Bereavement Program on spousally bereaved parents: Grief, mental health problems, alcohol problems, and coping efficacy.

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Sandler, Irwin; Tein, Jenn-Yun; Cham, Heining; Wolchik, Sharlene; Ayers, Tim

2016-08-01

This study reports on the findings from a 6-year follow-up of a randomized trial of the Family Bereavement Program (FBP) on the outcomes for spousally bereaved parents. Spousally bereaved parents (N = 131) participated in the trial in which they were randomly assigned to receive the FBP (N = 72) or literature control (N = 59). Parents were assessed at four time points: pretest, posttest, and 11-month and 6-year follow-up. They reported on mental health problems, grief, and parenting at all four time periods. At the 6-year follow-up, parents reported on additional measures of persistent complex bereavement disorder, alcohol abuse problems, and coping efficacy. Bereaved parents in the FBP as compared to those in the literature control had lower levels of symptoms of depression, general psychiatric distress, prolonged grief, and alcohol problems, and higher coping efficacy (for mothers) at the 6-year follow-up. Multiple characteristics of the parent (e.g., gender, age, and baseline mental health problems) and of the spousal death (e.g., cause of death) were tested as moderators of program effects on each outcome, but only 3 of 45 tests of moderation were significant. Latent growth modeling found that the effects of the FBP on depression, psychiatric distress, and grief occurred immediately following program participation and were maintained over 6 years. Mediation analysis found that improvement in positive parenting partially mediated program effects to reduce depression and psychiatric distress, but had an indirect effect to higher levels of grief at the 6-year follow-up. Mediation analysis also found that improved parenting at the 6-year follow-up was partially mediated by program effects to reduce depression and that program effects to increase coping efficacy at the 6-year follow-up was partially mediated through reduced depression and grief and improved parenting. FBP reduced mental health problems, prolonged grief, and alcohol abuse, and increased coping

Development of a set of process and structure indicators for palliative care: the Europall project

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Woitha Kathrin

2012-11-01

Full Text Available Abstract Background By measuring the quality of the organisation of palliative care with process and structure quality indicators (QIs, patients, caregivers and policy makers are able to monitor to what extent recommendations are met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of public programmes, and will enable comparisons between organisations or countries. Methods As no European set of indicators for the organisation of palliative care existed, such a set of QIs was developed. An update of a previous systematic review was made and extended with more databases and grey literature. In two project meetings with practitioners and experts in palliative care the development process of a QI set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council of Europe. Results The searches resulted in 151 structure and process indicators, which were discussed in steering group meetings. Of those QIs, 110 were eligible for the final framework. Conclusions We developed the first set of QIs for the organisation of palliative care. This article is the first step in a multi step project to identify, validate and pilot QIs.

The Effectiveness of Cognitive-Behavioral Therapy on Bereaved University Students' Hope

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Seyyed Nahid Hosseininezhad

2016-05-01

Full Text Available The present research aims to study the effectiveness of cognitive-behavioral therapy (CBT on bereaved students' hope. This is an applied research of quasi-experimental type and pretest and posttest design with control group. We selected 30 bereaved university students using stratified sampling method. We used Schneider Hope Questionnaire as the pretest-posttest in the research and analyzed using the statistical method of covariance analysis. The data analysis results indicate that cognitive-behavioral therapy increases bereaved students' hope and there is a significant difference between the two groups. The results of this study show that cognitive-behavioral group therapy influences hope and increases bereaved students' hope by helping them in their emotional discharge and acceptance of death.

Understanding bereavement, grief, and mourning: implications for donation and transplant professionals.

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Corr, Charles A; Coolican, Margaret B

2010-06-01

This article surveys recent literature on bereavement, grief, and mourning. It offers a review of the state of the art of current understandings of those topics to assist professionals who work in the field of organ and tissue donation and transplantation. The article's goal is to provide well-developed and up-to-date education and knowledge about bereavement, grief, and mourning to supplement the natural skills and experience of donation and transplant professionals in their work with bereaved persons.

Do religious or spiritual beliefs influence bereavement? A systematic review.

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Becker, Gerhild; Xander, Carola J; Blum, Hubert E; Lutterbach, Johannes; Momm, Felix; Gysels, Marjolein; Higginson, Irene J

2007-04-01

Responses to bereavement may be influenced by characteristics such as age or gender, but also by factors like culture and religion. A systematic review was undertaken to assess whether spiritual or religious beliefs alter the process of grief and/or bereavement. Fifteen computerized databases were searched. Thirty-two studies met the inclusion criteria. Evidence was graded according to the standard grading system of the Clinical Outcomes Group and by the SIGNAL score. In total, 5715 persons were examined: 69% women, 87% white, 83% protestant. Ninety-four percent of studies show some positive effects of religious/spiritual beliefs on bereavement, but there was a great heterogeneity regarding included populations and outcome measurements. Available data do not allow for a definite answer on whether religious/spiritual beliefs effectively influence bereavement as most studies suffer from weaknesses in design and methodological flaws. Further research is needed. Recommendations for further research are given.

Parental burden, coping, and family functioning in primary caregivers of children with Joubert syndrome.

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Luescher, J L; Dede, D E; Gitten, J C; Fennell, E; Maria, B L

1999-10-01

Children with Joubert syndrome have physical and intellectual disabilities. The purpose of this study was to assess the impact of Joubert syndrome on parental burden, coping, and family functioning. Forty-nine primary caregivers were surveyed. Forty-three primary caregivers were mothers and six were fathers; their mean age was 34 years. The following measures were used: Beck Depression Inventory, Child Development Inventory, Caregiver Strain Index, Family Assessment Device, and Ways of Coping Checklist-Revised. The data show that caregiver burden is not related to the severity of the child's illness, but that caregivers report significant burden. Higher burden was associated with the use of palliative coping methods, and family functioning was problematic. The results of this study suggest that for parents of children with Joubert syndrome, degree of parental burden depends more on the parents' coping skills and the level of family functioning rather than on the degree of the child's impairment. These findings highlight the importance of assessing caregiver burden, as well as decreased family functioning or coping abilities, since these problems often can be managed with psychologic intervention.

Family caregivers of palliative cancer patients at home: the puzzle of pain management.

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Mehta, Anita; Cohen, S Robin; Carnevale, Franco A; Ezer, Hélène; Ducharme, Francine

2010-01-01

The purpose of this grounded theory study was to understand the processes used by family caregivers to manage the pain of cancer patients at home. A total of 24 family caregivers participated. They were recruited using purposeful then theoretical sampling. The data sources were taped, transcribed (semi-structured) interviews and field notes. Data analysis was based on Strauss and Corbin's (1998) requirements for open, axial, and selective coding. The result was an explanatory model titled "the puzzle of pain management," which includes four main processes: "drawing on past experiences"; "strategizing a game plan"; "striving to respond to pain"; and "gauging the best fit," a decision-making process that joins the puzzle pieces. Understanding how family caregivers assemble their puzzle pieces can help health care professionals make decisions related to the care plans they create for pain control and help them to recognize the importance of providing information as part of resolving the puzzle of pain management.

Why people accept opioids: role of general attitudes toward drugs, experience as a bereaved family, information from medical professionals, and personal beliefs regarding a good death.

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Shinjo, Takuya; Morita, Tatsuya; Hirai, Kei; Miyashita, Mitsunori; Shimizu, Megumi; Tsuneto, Satoru; Shima, Yasuo

2015-01-01

Many surveys have evaluated patient-related barriers to pain management. To explore associations between a preference for opioids and general attitudes toward drugs, the experience and information received as a bereaved family, and beliefs regarding a good death. A cross-sectional survey, performed in 2010, of bereaved families of patients with cancer in palliative care units across Japan. Questionnaires were sent to 997 families. A total of 66% of families responded. Of these, 224 responses were excluded because the family declined to participate in the study (n = 38), the patient was not receiving any opioid analgesics, and there were missing data (n = 164), or data were missing for the primary end points (n = 22). Thus, 432 responses were finally analyzed (43%). In total, 26%, 41%, and 31% of family members stated that they strongly want to receive, want to receive, or slightly want to receive opioids if needed in the future, respectively. Determinants associated with a preference for receiving opioid treatment were the following: a general appreciation of the drugs (P = 0.005), witnessing an improvement in the patient's quality of life as a result of pain relief (P = 0.003), information provided by medical professionals that the opioid could be discontinued if side effects developed (P = 0.042), and the belief that a good death was one that was free from pain and physical distress (P families whose relatives were treated with opioid analgesics reported a preference to receive opioid analgesics for the treatment of cancer pain, if necessary, in the future. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Quality assessment of palliative home care in Italy.

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Scaccabarozzi, Gianlorenzo; Lovaglio, Pietro Giorgio; Limonta, Fabrizio; Floriani, Maddalena; Pellegrini, Giacomo

2017-08-01

The complexity of end-of-life care, represented by a large number of units caring for dying patients, of different types of organizations motivates the importance of measure the quality of provided care. Despite the law 38/2010 promulgated to remove the barriers and provide affordable access to palliative care, measurement, and monitoring of processes of home care providers in Italy has not been attempted. Using data drawn by an institutional voluntary observatory established in Italy in 2013, collecting home palliative care units caring for people between January and December 2013, we assess the degree to which Italian home palliative care teams endorse a set of standards required by the 38/2010 law and best practices as emerged from the literature. The evaluation strategy is based on Rasch analysis, allowing to objectively measuring both performances of facilities and quality indicators' difficulty on the same metric, using 14 quality indicators identified by the observatory's steering committee. Globally, 195 home care teams were registered in the observatory reporting globally 40 955 cured patients in 2013 representing 66% of the population of home palliative care units active in Italy in 2013. Rasch analysis identifies 5 indicators ("interview" with caregivers, continuous training provided to medical and nursing staff, provision of specialized multidisciplinary interventions, psychological support to the patient and family, and drug supply at home) easy to endorse by health care providers and 3 problematic indicators (presence of a formally established Local Network of Palliative care in the area of reference, provision of the care for most problematic patient requiring high intensity of the care, and the percentage of cancer patient dying at Home). The lack of Local Network of Palliative care, required by law 38/2010, is, at the present, the main barrier to its application. However, the adopted methodology suggests that a clear roadmap for health facilities

Perceived Stigma of Sudden Bereavement as a Risk Factor for Suicidal Thoughts and Suicide Attempt: Analysis of British Cross-Sectional Survey Data on 3387 Young Bereaved Adults

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Pitman, Alexandra; Rantell, Khadija; Marston, Louise; King, Michael; Osborn, David

2017-01-01

The sudden death of a friend or relative, particularly by suicide, is a risk factor for suicide. People who experience sudden bereavement report feeling highly stigmatised by the loss, potentially influencing access to support. We assessed whether perceived stigma following sudden bereavement is associated with suicidal thoughts and suicide attempt. We analysed cross-sectional survey data on 3387 young adults bereaved by the sudden death of a close contact. We tested the association of high v...

'Being a conduit' between hospital and home: stakeholders' views and perceptions of a nurse-led Palliative Care Discharge Facilitator Service in an acute hospital setting.

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Venkatasalu, Munikumar Ramasamy; Clarke, Amanda; Atkinson, Joanne

2015-06-01

To explore and critically examine stakeholders' views and perceptions concerning the nurse-led Palliative Care Discharge Service in an acute hospital setting and to inform sustainability, service development and future service configuration. The drive in policy and practice is to enable individuals to achieve their preferred place of care during their last days of life. However, most people in UK die in acute hospital settings against their wishes. To facilitate individuals' preferred place of care, a large acute hospital in northeast England implemented a pilot project to establish a nurse-led Macmillan Palliative Care Discharge Facilitator Service. A pluralistic evaluation design using qualitative methods was used to seek stakeholders' views and perceptions of this service. In total, 12 participants (five bereaved carers and seven health professionals) participated in the evaluation. Semi-structured interviews were conducted with bereaved carers who used this service for their relatives. A focus group and an individual interview were undertaken with health professionals who had used the service since its inception. Individual interviews were also conducted with the Discharge Facilitator and service manager. Analysis of all data was guided by Framework Analysis. Four key themes emerged relating to the role of the Discharge Facilitator Service: achieving preferred place of care; the Discharge Facilitator as the 'conduit' between hospital and community settings; delays in hospital discharge and stakeholders' perceptions of the way forward for the service. The Discharge Facilitator Service acted as a reliable resource and support for facilitating the fast-tracking of end-of-life patients to their preferred place of care. Future planning for hospital-based palliative care discharge facilitating services need to consider incorporating strategies that include: increased profile of the service, expansion of service provision and the Discharge Facilitator's earlier

The impact of stillbirth on bereaved parents: A qualitative study.

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Nuzum, Daniel; Meaney, Sarah; O'Donoghue, Keelin

2018-01-01

To explore the lived experiences and personal impact of stillbirth on bereaved parents. Semi-structured in-depth interviews analysed by Interpretative Phenomenological Analysis (IPA) on a purposive sample of parents of twelve babies born following fetal death at a tertiary university maternity hospital in Ireland with a birth rate of c8,500 per annum and a stillbirth rate of 4.6/1000. Stillbirth had a profound and enduring impact on bereaved parents. Four superordinate themes relating to the human impact of stillbirth emerged from the data: maintaining hope, importance of the personhood of the baby, protective care and relationships (personal and professional). Bereaved parents recalled in vivid detail their experiences of care following diagnosis of stillbirth and their subsequent care. The time between diagnosis of a life-limiting anomaly or stillbirth and delivery is highlighted as important for parents as they find meaning in their loss. The impact of stillbirth on bereaved parents is immense and how parents are cared for is recalled in precise detail as they revisit their experience. Building on existing literature, these data bring to light the depth of personal experience and impact of stillbirth for parents and provides medical professionals with valuable insights to inform their care of bereaved parents and the importance of clear and sensitive communication.

Bereavement Photography for Children: Program Development and Healthcare Professionals’ Response

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Michelson, Kelly Nicole; Blehart, Kathleen; Hochberg, Todd; James, Kristin; Frader, Joel

2013-01-01

Reports of in-hospital bereavement photography focus largely on stillborns and neonates. Empiric data regarding the implementation of bereavement photography in pediatrics beyond the neonatal period and the impact of such programs on healthcare professionals (HCPs) is lacking. We describe the implementation of a pediatric intensive care unit (PICU) bereavement photography program and use questionnaire data from HCPs to describe HCPs’ reflections on the program and to identify program barriers. From July, 2007 through April, 2010 families of 59 (36%) of the 164 patients who died in the PICU participated in our bereavement photography program. Forty questionnaires from 29 HCPs caring for 39 participating patients/families indicated that families seemed grateful for the service (n=34, 85%) and that the program helped HCPs feel better about their role (n=30, 70%). Many HCPs disagreed that the program consumed too much of his/her time (n=34, 85%) and that the photographer made his/her job difficult (n=37, 92.5%). Qualitative analysis of responses to open ended questions revealed four categories: the program’s general value; positive aspects of the program; negative aspects of the program; and suggestions for improvements. Implementing bereavement photography in the PICU is feasible though some barriers exist. HCPs may benefit from such programs. PMID:24520925

Palliative psychiatry for severe persistent mental illness as a new approach to psychiatry? Definition, scope, benefits, and risks.

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Trachsel, Manuel; Irwin, Scott A; Biller-Andorno, Nikola; Hoff, Paul; Riese, Florian

2016-07-22

As a significant proportion of patients receiving palliative care suffer from states of anxiety, depression, delirium, or other mental symptoms, psychiatry and palliative care already collaborate closely in the palliative care of medical conditions. Despite this well-established involvement of psychiatrists in palliative care, psychiatry does not currently explicitly provide palliative care for patients with mental illness outside the context of terminal medical illness. Based on the WHO definition of palliative care, a, a working definition of palliative psychiatry is proposed. Palliative psychiatry focuses on mental health rather than medical/physical issues. We propose that the beneficiaries of palliative psychiatry are patients with severe persistent mental illness, who are at risk of therapeutic neglect and/or overly aggressive care within current paradigms. These include long-term residential care patients with severe chronic schizophrenia and insufficient quality of life, those with therapy-refractory depressions and repeated suicide attempts, and those with severe long-standing therapy-refractory anorexia nervosa. An explicitly palliative approach within psychiatry has the potential to improve quality of care, person-centredness, outcomes, and autonomy for patients with severe persistent mental illness. The first step towards a palliative psychiatry is to acknowledge those palliative approaches that already exist implicitly in psychiatry. Basic skills for a palliative psychiatry include communication of diagnosis and prognosis, symptom assessment and management, support for advance (mental health) care planning, assessment of caregiver needs, and referral to specialized services. Some of these may already be considered core skills of psychiatrists, but for a truly palliative approach they should be exercised guided by an awareness of the limited functional prognosis and lifespan of patients with severe persistent mental illness.

The Bereavement Guilt Scale.

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Li, Jie; Stroebe, Magaret; Chan, Cecilia L W; Chow, Amy Y M

2017-06-01

The rationale, development, and validation of the Bereavement Guilt Scale (BGS) are described in this article. The BGS was based on a theoretically developed, multidimensional conceptualization of guilt. Part 1 describes the generation of the item pool, derived from in-depth interviews, and review of the scientific literature. Part 2 details statistical analyses for further item selection (Sample 1, N = 273). Part 3 covers the psychometric properties of the emergent-BGS (Sample 2, N = 600, and Sample 3, N = 479). Confirmatory factor analysis indicated that a five-factor model fit the data best. Correlations of BGS scores with depression, anxiety, self-esteem, self-forgiveness, and mode of death were consistent with theoretical predictions, supporting the construct validity of the measure. The internal consistency and test-retest reliability were also supported. Thus, initial testing or examination suggests that the BGS is a valid tool to assess multiple components of bereavement guilt. Further psychometric testing across cultures is recommended.

Bereaved Employee: Returning to Work

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... Work Working Through Grief About Us The Bereaved Employee: Returning to Work By Helen Fitzgerald, CT After ... One employer called a grief therapist to help employees after a co-worker reported the death of ...

Socioeconomic Differences in and Predictors of Home-Based Palliative Care Health Service Use in Ontario, Canada.

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Cai, Jiaoli; Guerriere, Denise N; Zhao, Hongzhong; Coyte, Peter C

2017-07-18

The use of health services may vary across people with different socioeconomic statuses, and may be determined by many factors. The purposes of this study were (i) to examine the socioeconomic differences in the propensity and intensity of use for three main home-based health services, that is, home-based palliative care physician visits, nurse visits and personal support worker (PSW) hours; and (ii) to explore the determinants of the use of home-based palliative care services. A prospective cohort study was employed. A total of 181 caregivers were interviewed biweekly over the course of the palliative care trajectory, yielding a total of 994 interviews. The propensity and intensity of health service use were examined using logistic regression and negative binomial regression, respectively. The results demonstrated that both the propensity and intensity of home-based nurse and PSW visits fell with socioeconomic status. The use of home-based palliative care services was not concentrated in high socioeconomic status groups. The common predictors of health service use in the three service categories were patient age, the Palliative Performance Scale (PPS) score and place of death. These findings may assist health service planners in the appropriate allocation of resources and service packages to meet the complex needs of palliative care populations.

The lived experience of family caregivers who provided end-of-life care to persons with advanced dementia.

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Peacock, Shelley; Duggleby, Wendy; Koop, Priscilla

2014-04-01

Dementia is a terminal illness, and family caregivers play a vital role in providing end-of-life care to their relative. The present study begins to address the paucity of research regarding end-of-life caregiving experience with dementia. This study utilized Munhall's methodology for interpretive phenomenology. Seven women and four men were interviewed two to three times within a year of their relative's death; interviews were transcribed verbatim and hermeneutically analyzed. Findings reveal two essential aspects of end-of-life dementia caregiving: being-with and being-there. Further findings are organized according to the existential life worlds. Examination of the life worlds demonstrates that 1) spatiality provided a sense or lack of feeling welcome to provide end-of-life care; 2) temporality was an eternity or time melting away quickly, or the right or wrong time to die; 3) corporeality revealed feelings of exhaustion; and 4) relationality was felt as a closeness to others or in tension-filled relationships. An understanding from bereaved caregivers' perspectives will help healthcare practitioners better support and empathize with family caregivers. Further research is warranted that focuses on other places of death and differences in experience based on gender or relationship to the care receiver.

Risk factors for suicide in offspring bereaved by sudden parental death from external causes.

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Burrell, Lisa Victoria; Mehlum, Lars; Qin, Ping

2017-11-01

Parentally bereaved offspring have an increased suicide risk as a group, but the ability to identify specific individuals at risk on the basis of risk and protective factors is limited. The present study aimed to investigate to what degree different risk factors influence suicide risk in offspring bereaved by parental death from external causes. Based on Norwegian registers, individual-level data were retrieved for 375 parentally bereaved suicide cases and 7500 parentally bereaved gender- and age-matched living controls. Data were analysed with conditional logistic regression. Bereaved offspring with low social support, indicated by offspring's single status and repeated changes in marital status and residence, had a significantly increased suicide risk compared to bereaved offspring with high social support. Moreover, low socioeconomic status, having an immigration background, having lost both parents and loss due to suicide significantly increased suicide risk. Several variables relevant to bereavement outcome, such as coping mechanisms and the quality of the parent-offspring relationship are impossible to examine by utilizing population registers. Moreover, the availability of data did not enable the measurement of marital stability and residence stability across the entire lifespan for older individuals. Healthcare professionals should be aware of the additional risk posed by the identified risk factors and incorporate this knowledge into existing practice and risk assessment in order to identify individuals at risk and effectively target bereaved family and friends for prevention and intervention programs. Ideal follow-up for bereaved families should include a specific focus on mobilizing social support. Copyright © 2017 Elsevier B.V. All rights reserved.

Comparison of informal caregiver and named nurse assessment of symptoms in elderly patients dying in hospital using the palliative outcome scale.

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Dawber, Rebecca; Armour, Kathy; Ferry, Peter; Mukherjee, Bhaskar; Carter, Christopher; Meystre, Chantal

2016-01-12

A prospective study of symptom assessments made by a healthcare professional (HCP; named nurse) and an informal caregiver (ICG) compared with that of the patient with a terminal diagnosis. To look at the validity of HCP and ICG as proxies, which symptoms they can reliably assess, and to determine who is the better proxy between HCP and ICG. A total of 50 triads of patient (>65 years) in the terminal phase, ICG and named nurse on medical wards of an acute general hospital. Assessments were made using the patient and caregiver versions of the palliative outcome scale (POS), all taken within a 24 h period. Agreement between patient-rated, ICG-rated and HCP-rated POS and POS for symptoms (POS-S) was measured using weighted-κ statistics. Demographic and clinical data on each group of participants were collected. ICG assessments have higher agreement with those of the patient than HCP. Better agreement in both groups was found for physical symptoms, and best agreement was for pain. The worst agreements were for psychological symptoms, such as anxiety and depression, and for satisfaction with information given. Psychological symptoms are overestimated by both ICG and HCP. ICGs are more reliable proxies than HCPs. A trend for overestimation of symptoms was found in both groups which may lead to undervaluation of the quality of life by proxy and overtreatment of symptoms. This highlights the need to always use the patient report when possible, and to be aware of the potential flaws in proxy assessment. Reasons for overestimation by proxies deserve further research. 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/

Provision of bereavement care in neonatal units in the United Kingdom.

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Robertson, Meredith J P; Aldridge, Anne; Curley, Anna E

2011-05-01

To establish what bereavement care services are available in neonatal units in the United Kingdom and to establish the availability to staff (doctors, nurses, and chaplains) of bereavement education, training, communication, and multicultural support. For families who lose a baby in the neonatal period, the support they receive from hospital staff can be pivotal in their ability to cope with their grief. Hospital staff are not always trained to provide this support. Limited evidence is available regarding hospital-based bereavement care in neonatology or its impact on outcome. Questionnaire survey of selected doctors, nurses, and chaplains in 200 neonatal units in the United Kingdom. We had responses from 100% of neonatal units surveyed. Of 600 individuals, 320 responded; 11% of doctors had never received any formal training in bereavement care, compared with 0.8% of nurses and 1.2% and chaplains. In addition, 31% of respondents thought the training they received was inadequate. Knowledge of grief theorists was poor. Up to 99% of units were helping parents create memories through photographs or handprints. Parents were uniformly given the chance to be with their baby at the time of death (99% overall). Siblings were encouraged to be present 71% of the time; 75% of respondents felt that information about the needs of different faith groups was available. Formal psychological support was offered to 45% of families after bereavement. Studies have shown that parents value clear communication, education about grieving, and demonstrated emotional support by staff. Our study has shown that there are deficiencies in staff training and education in this area. Educators must promote the inclusion of content on bereavement/end-of-life care. Additional education on cultural issues would be helpful. Managing the bereavement process well to minimize morbidity for families and healthcare providers is an important challenge for the future.

Acknowledging sexual bereavement: a path out of disenfranchised grief.

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Radosh, Alice; Simkin, Linda

2016-11-01

Despite increasing awareness of the importance of sexuality for older adults, research and popular literature rarely acknowledge what we term "sexual bereavement" - mourning the loss of sexual intimacy when predeceased. The reluctance to acknowledge sexual bereavement may create "disenfranchised grief" leaving the bereaved unsupported in coping with this aspect of mourning. This preliminary study focuses on women in the United States and sought to determine whether they anticipate missing sex if predeceased, whether they would want to talk about this loss, and identified factors associated with communicating about sexual bereavement. Findings from our survey of 104 women, 55 years and older, most of whom were heterosexual, revealed that a large majority (72%) anticipates missing sex with their partner and 67% would want to initiate a discussion about this. An even higher percentage would want friends to initiate the topic. Yet, 57% of participants report it would not occur to them to initiate a discussion with a widowed friend about the friend's loss. Disenfranchised grief can have negative emotional and physical consequences. This paper suggests a role for friends and professionals in addressing this neglected issue. Copyright © 2016 Elsevier Inc. All rights reserved.

Grief, Depressive Symptoms, and Physical Health among Recently Bereaved Spouses

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Utz, Rebecca L.; Caserta, Michael; Lund, Dale

2012-01-01

Purpose: Widowhood is among the most distressing of all life events, resulting in both mental and physical health declines. This paper explores the dynamic relationship between physical health and psychological well-being among recently bereaved spouses. Design and Methods: Using a sample of 328 bereaved persons who participated in the "Living…

Using play therapy in paediatric palliative care: listening to the story and caring for the body.

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van Breemen, Camara

2009-10-01

To be truly comprehensive, palliative care for children must address more than pain control and symptom management. Holistic care also encompasses attention to the child's relationships, hopes, fears and wishes. Parents and caregivers of dying children are generally the primary decision-makers in the child's care and can find the transition from active, to palliative care, particularly difficult. Nurses who understand the parents' perspective can better support them. Children reveal their hopes and fears through play. By being attuned to symbols and themes in play, nurses can better interpret the dying child's journey. Nurses can facilitate communication and connection between parents and child and thereby promote healing during the dying process.

Building bridges in American Indian bereavement research.

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Walker, Andrea C

2009-01-01

Due to the severity of the risks involved in violation of ethical principles with research of American Indian populations, more attention in literature is needed on the topic. This article reviews discussions of ethical and methodological issues, uses Muscogee Creeks' responses from the author's prior study (Walker, 2008; Walker & Balk, 2007) as an example and application, and specifically focuses on the research of death and bereavement. The article provides ethical reflection and recommendations for designing death and bereavement research as an outsider to the culture, as well as for building trust with participants in American Indian populations.

Spirituality and distress in palliative care consultation.

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Hills, Judith; Paice, Judith A; Cameron, Jacqueline R; Shott, Susan

2005-08-01

One's spirituality or religious beliefs and practices may have a profound impact on how the individual copes with the suffering that so often accompanies advanced disease. Several previous studies suggest that negative religious coping can significantly affect health outcomes. The primary aim of this study was to explore the relationship between spirituality, religious coping, and symptoms of distress among a group of inpatients referred to the palliative care consult service. Pilot study. The study was conducted in a large academic medical center with a comprehensive Palliative Care and Home Hospice Program. (1) National Comprehensive Cancer Network Distress Management Assessment Tool; (2) Pargament Brief Religious Coping Scale (Brief RCOPE); (3) Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp); (4) Puchalski's FICA; and (5) Profile of Mood States-Short Form (POMS-SF). The 31 subjects surveyed experienced moderate distress (5.8 +/- 2.7), major physical and psychosocial symptom burden, along with reduced function and significant caregiving needs. The majority (87.2%) perceived themselves to be at least somewhat spiritual, with 77.4% admitting to being at least somewhat religious. Negative religious coping (i.e., statements regarding punishment or abandonment by God) was positively associated with distress, confusion, depression, and negatively associated with physical and emotional well-being, as well as quality of life. Palliative care clinicians should be alert to symptoms of spiritual distress and intervene accordingly. Future research is needed to identify optimal techniques to address negative religious coping.

Palliative cancer care in Middle Eastern countries: accomplishments and challenges †

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Silbermann, M.; Arnaout, M.; Daher, M.; Nestoros, S.; Pitsillides, B.; Charalambous, H.; Gultekin, M.; Fahmi, R.; Mostafa, K.A.H.; Khleif, A.D.; Manasrah, N.; Oberman, A.

2012-01-01

Background In larger parts of the Middle East palliative care is still misunderstood among health professionals, cancer patients and the public at large. One reason to that is because the term does not obviously communicate the intent of this clinical discipline, which is lending better quality of life while combating cancer. Further, culture, tradition and religion have contributed to this misgiving and confusion especially at the terminal stage of the disease. Methods The Middle East Cancer Consortium jointly with the American Society of Clinical Oncology, the American Oncology Nursing Society, the San Diego Hospice Center for Palliative Medicine and the Children's Hospital & Clinics of Minnesota initiated a series of training courses and workshops in the Middle East to provide updated training to physicians, nurses, social workers and psychologists from throughout the region with basic concepts of palliative care and pain managements in adults and children cancers. Results During the past 6 years hundreds of professionals took part in these educational and training activities, thereby creating the core of trained caregivers who start to make the change in their individual countries. Conclusions The outcome of consecutive training activities can overcome geopolitical instabilities, and yield a genuine change in approach of both regulators, medical administrators, medical staff and the public; as to the important contribution of palliative care services to the welfare of the patient and his/her family. PMID:22628412

Caring for terminal AIDS patients: The experiences of caregivers in a palliative care institution

Directory of Open Access Journals (Sweden)

Magdalena (Dalena van Rooyen

2009-06-01

Full Text Available This research focused on the lived experiences of caregivers working with AIDS patients, particularly patients who die from this disease whilst resident in a formal institution. A qualitative, exploratory, descriptive, and contextual research design with a phenomenological approach to inquiry was utilised. Thirteen unstructured interviews, which were audio-taped, were conducted with caregivers working full-time in a formal institution caring for patients who are dying from AIDS. The transcribed interviews were analysed using Tesch’s method of descriptive analysis (in Creswell 1994:115. One central theme emerged, namely that in their daily duty (at their place of work, caregivers experienced various challenges as a result of having to deal with the death of their patients suffering from AIDS, and five sub-themes were formulated from further analysis. The five subthemes were: • Caregivers experienced emotional challenges in caring for patients dying of AIDS; • Caregivers experienced a difference in death and dying of adults as apposed to children; • Caregivers experienced the rationalisation of death and dying differently; • Caregivers experienced that faith in God give them strength to cope with death and dying; • Caregivers experienced caring for patients as fulfilling and meaningful to them despite the sadness of death and dying. The participants face the death of their patients daily, from a disease that causes untold suffering to the patients, family members and to the caregivers themselves, who wish they could prevent the anguish, the pain and the inability of the medical profession to do more than they are at present towards curing this disease. They described their emotional experiences, which included the various challenges that they face as a result of having to deal with the death and dying of their patients suffering from AIDS. The information shared by these participants formed the foundation of the broad guidelines that

Cultural influences on parental bereavement in Chinese families.

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Ho, Sio-Wa; Brotherson, Sean E

2007-01-01

The purpose of this study was to explore the bereavement experiences of parents who had experienced the death of a child in Chinese families. In-depth interviews were conducted with 10 bereaved parents in Macau, China. Narrative accounts of Chinese parents' experience in the loss of a child were explored to understand how their connection to the deceased child and their worldview were influenced by cultural beliefs and values. Study themes related to parental connections with the deceased child included the use of object linking, memorializing acts, and avoidance of traditional funeral processes, with clear patterns of Chinese cultural influence. Additionally, themes related to impacts on parental worldview included use of the concept of fate as a rationale for child loss and influences on religious orientation. The influence of cultural beliefs and background on Chinese parents as they deal with the issue of a child's death was apparent. Further research is needed and will benefit our understanding of parental bereavement in Chinese families.

Uncovering an invisible network of direct caregivers at the end of life: a population study.

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Burns, Catherine M; Abernethy, Amy P; Dal Grande, Eleanora; Currow, David C

2013-07-01

Most palliative care research about caregivers relies on reports from spouses or adult children. Some recent clinical reports have noted the assistance provided by other family members and friends. This population study aims to define the people who actually provide care at the end of life. A South Australian study conducted an annual randomized health population survey (n=23,706) over a 7 year period. A sample was obtained of self-identifying people who had someone close to them die and 'expected' death in the last 5 years (n=7915). Data were standardised to population norms for gender, 10-year age group, socioeconomic status, and region of residence. People of all ages indicated they provided 'hands on' care at the end of life. Extended family members (not first degree relatives) and friends accounted for more than half (n=1133/2028; 55.9%) of identified hands-on caregivers. These people came from the entire age range of the adult community. The period of time for which care was provided was shorter for this group of caregivers. People with extended family or friends providing care, were much more likely to be supported to die at home compared to having a spousal carer. This substantial network of caregivers who are mainly invisible to the health team provide the majority of care. Hospice and palliative care services need to create specific ways of identifying and engaging this cohort in order to ensure they are receiving adequate support in the role. Relying on 'next-of-kin' status in research will not identify them.

Branding Palliative Care Units by Avoiding the Terms "Palliative" and "Hospice".

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Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai

2017-01-01

The term "palliative care" has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term "supportive care" instead of "palliative care" in naming palliative care units has been proposed in several studies. In Taiwan, terms other than "palliative" and "hospice" are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms "palliative" and "hospice" in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms "palliative" and "hospice" in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term "palliative," while 25.2% (n = 14) included the term "hospice." Religiously affiliated hospitals were less likely to use the terms "palliative" and "hospice" (χ 2 = 11.461, P = .001). There was also a lower prevalence of use of the terms "palliative" and "hospice" for naming palliative care units in private hospitals than in public hospitals (χ 2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms "palliative" and "hospice" in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon.

Protocol for a systematic review of preference-based instruments for measuring care-related outcomes and their suitability for the palliative care setting.

NARCIS (Netherlands)

McCaffrey, N.; Janabi, H. Al; Currow, D.; Hoefman, R.; Ratcliffe, J.

2016-01-01

Introduction: Despite informal caregivers' integral role in supporting people affected by disease or disability, economic evaluations often ignore the costs and benefits experienced by this group, especially in the palliative setting. The purpose of this systematic review is to identify

Function of local networks in palliative care: a Dutch view.

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Nikbakht-Van de Sande, C V M Vahedi; van der Rijt, C C D; Visser, A Ph; ten Voorde, M A; Pruyn, J F A

2005-08-01

stimulate mutual collaboration, improve accessibility to health care services and increase the quality of these services. The most important achievements obtained by the palliative care networks were: increase in personal contacts between colleagues in a region, improved engagement and collaboration between participating organizations, enhanced insight in the health care provisions, joined initiatives for the development of new care products, and organization of patient-tailored care. Important success factors for the networks were deemed: fruitful mutual contacts, regular funding and the collective development of care products. By logistic regression analyses, the collective development of new care products and the organization of case discussions between caregivers from different health care services turned out to be the most important predictors for success of the palliative care networks. Projects that stimulate the communication between professionals appear to improve the mutual collaboration between individual participants and between the participating organizations, which consequently enhances the quality of palliative care.

Burden Experienced by Family Caregivers of Patients at the End of Life: What do General Practice Teams Offer?

Science.gov (United States)

Krug, K; Bölter, R; Ballhausen, R A; Engeser, P; Peters-Klimm, F

2016-09-01

The aim of the study: was to determine how far general practice teams are prepared to relieve family caregivers of palliative patients from their caregiving burden, the support they actually offer, and where they identify needs for improvement. Method: Focus groups and interviews on the issues of identification and support of family caregivers were conducted with practice teams (general practitioners, GPs, and medical assistants, MAs) and the results qualitatively analyzed. Results: 21 participants (14 GPs, 7 MAs) from 13 practices identified burdened family caregivers, thereupon offered support and provided contact details to local consultation services. They suggested to family caregivers that they should use their social network to create room for meeting their own needs. Conclusions: Practice teams use a multitude of individualized and unsystematic approaches to support family caregivers. In further studies within the framework of this project, systematic approaches will be identified and tried out. © Georg Thieme Verlag KG Stuttgart · New York.

Post traumatic stress symptoms in the first years of conjugal bereavement

NARCIS (Netherlands)

Schut, Henk; de Keijser, Adrianus; van den Bout, Jan; Dijkhuis, Jos

1990-01-01

Bereavement is generally regarded as one of the most stressful events one can encounter. Yet, bereavement research and the study of post-traumatic stress seem to be mainly developing along separate lines. Strictly speaking, post-traumatic stress disorder can only occur after encountering events

Risk of childhood injuries after prenatal exposure to maternal bereavement

DEFF Research Database (Denmark)

Virk, Jasveer; Li, Jiong; Lauritsen, Jens

2013-01-01

The aim of this study was to assess the risk of injuries among children exposed to a stressful life exposure (defined as bereavement) before conception or during fetal life.......The aim of this study was to assess the risk of injuries among children exposed to a stressful life exposure (defined as bereavement) before conception or during fetal life....

Bereavement photography for children: program development and health care professionals' response.

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Michelson, Kelly Nicole; Blehart, Kathleen; Hochberg, Todd; James, Kristin

2013-07-01

Reports of in-hospital bereavement photography focus largely on stillborns and neonates. Empiric data regarding the implementation of bereavement photography in pediatrics beyond the neonatal period and the impact of such programs on healthcare professionals (HCPs) is lacking. The authors describe the implementation of a pediatric intensive care unit (PICU) bereavement photography program and use questionnaire data from HCPs to describe HCPs' reflections on the program and to identify program barriers. From July 2007 through April 2070, families of 59 (36%) of the 164 patients who died in the PICU participated in our bereavement photography program. Forty questionnaires from 29 HCPs caring for 39 participating patients/families indicated that families seemed grateful for the service (n = 34; 85%) and that the program helped HCPs feel better about their role (n = 30; 70%). Many HCPs disagreed that the program consumed too much of his/her time (n = 34; 85%) and that the photographer made his/her job difficult (n = 37; 92.5%). Qualitative analysis of responses to open-ended questions revealed 4 categories: the program's general value; positive aspects of the program; negative aspects of the program; and suggestions for improvements. Implementing bereavement photography in the PICU is feasible though some barriers exist. HCPs may benefit from such programs.

Bereaved parents’ online grief communities: de-tabooing practices or relationbuilding grief-ghettos?

DEFF Research Database (Denmark)

Sandvik, Kjetil; Christensen, Dorthe Refslund; Hård af Segerstad, Ylva

their loss as well as their ability to establish and continue their role as parents. However, with new practices on children’s graves, the growing use of memory tattoos and especially the use of online media as platform for various communities for bereaved parents, this seem to be changing and strengthen...... both the interpersonal communication and social interactions about and with the deceased child. This study presents results from case studies of both open and closed online grief communities for bereaved parents in Denmark and Sweden (Refslund Christensen & Sandvik 2013, Hård af Segerstad & Kasperowski...... media, casting online communities for bereaved parents as grief-ghettos? Studying bereaved parents’ grief work in dynamic communities online enhances our understanding of contemporary and contributes to a nuancing of theoretical understanding of parental grief. References Christensen, D. R., & Sandvik...

Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities.

Science.gov (United States)

McLaughlin, Dorry; Barr, Owen; McIlfatrick, Sonja; McConkey, Roy

2015-12-01

Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals' perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training. A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed. Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: 'information and preparation', 'provision of care' and 'family-centred care'. This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians. 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/

Early identification of and proactive palliative care for patients in general practice, incentive and methods of a randomized controlled trial

Directory of Open Access Journals (Sweden)

Thoonsen Bregje

2011-11-01

Full Text Available Abstract Background According to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patient's tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer. Methods/Design A two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts. Discussion We expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined. Trial Registration The Netherlands National Trial Register: NTR2815

Meaning-based group counseling for bereavement: bridging theory with emerging trends in intervention research.

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MacKinnon, Christopher J; Smith, Nathan Grant; Henry, Melissa; Berish, Mel; Milman, Evgenia; Körner, Annett; Copeland, Laura S; Chochinov, Harvey M; Cohen, S Robin

2014-01-01

A growing body of scholarship has evaluated the usefulness of meaning-based theories in the context of bereavement counseling. Although scholars have discussed the application of meaning-based theories for individual practice, there is a lack of inquiry regarding its implications when conducting bereavement support groups. The objective of this article is to bridge meaning-based theories with bereavement group practice, leading to a novel intervention and laying the foundation for future efficacy studies. Building on recommendations specified in the literature, this article outlines the theoretical paradigms and structure of a short-term meaning-based group counseling intervention for uncomplicated bereavement.

Associations between advanced cancer patients' survival and family caregiver presence and burden.

Science.gov (United States)

Dionne-Odom, J Nicholas; Hull, Jay G; Martin, Michelle Y; Lyons, Kathleen Doyle; Prescott, Anna T; Tosteson, Tor; Li, Zhongze; Akyar, Imatullah; Raju, Dheeraj; Bakitas, Marie A

2016-05-01

We conducted a randomized controlled trial (RCT) of an early palliative care intervention (ENABLE: Educate, Nurture, Advise, Before Life Ends) for persons with advanced cancer and their family caregivers. Not all patient participants had a caregiver coparticipant; hence, we explored whether there were relationships between patient survival, having an enrolled caregiver, and caregiver outcomes prior to death. One hundred and twenty-three patient-caregiver dyads and 84 patients without a caregiver coparticipant participated in the ENABLE early versus delayed (12 weeks later) RCT. We collected caregiver quality-of-life (QOL), depression, and burden (objective, stress, and demand) measures every 6 weeks for 24 weeks and every 3 months thereafter until the patient's death or study completion. We conducted survival analyses using log-rank and Cox proportional hazards models. Patients with a caregiver coparticipant had significantly shorter survival (Wald = 4.31, HR = 1.52, CI: 1.02-2.25, P = 0.04). After including caregiver status, marital status (married/unmarried), their interaction, and relevant covariates, caregiver status (Wald = 6.25, HR = 2.62, CI: 1.23-5.59, P = 0.01), being married (Wald = 8.79, HR = 2.92, CI: 1.44-5.91, P = 0.003), and their interaction (Wald = 5.18, HR = 0.35, CI: 0.14-0.87, P = 0.02) were significant predictors of lower patient survival. Lower survival in patients with a caregiver was significantly related to higher caregiver demand burden (Wald = 4.87, CI: 1.01-1.20, P = 0.03) but not caregiver QOL, depression, and objective and stress burden. Advanced cancer patients with caregivers enrolled in a clinical trial had lower survival than patients without caregivers; however, this mortality risk was mostly attributable to higher survival by unmarried patients without caregivers. Higher caregiver demand burden was also associated with decreased patient survival. © 2016 The Authors. Cancer Medicine published by

The Understanding Bereavement Evaluation Tool (UBET) for midwives: factor structure and clinical research applications.

Science.gov (United States)

Hollins Martin, Caroline J; Forrest, Eleanor; Wylie, Linda; Martin, Colin R

2013-10-01

The NMSF (2009) survey reported that bereavement midwife care was inadequate in a number of UK NHS Trusts. Using a small grant from the Scottish government, 3 experienced midwifery lecturers designed an interactive workbook called "Shaping bereavement care for midwives in clinical practice" for the purpose of improving delivery of bereavement education to student midwives. An instrument called the Understanding Bereavement Evaluation Tool (UBET) was designed to measure effectiveness of the workbook at equipping students with essential knowledge. To assess validity and reliability of the UBET at measuring midwives' self-perceptions of knowledge surrounding delivery of bereavement care to childbearing women, partners and families who have experienced childbirth related bereavement. An evaluative audit using the UBET was undertaken to explore student midwives' (n=179) self perceived knowledge levels before and after the workbook intervention. Validity tests have shown that the UBET, (6-item version), could be considered a psychometrically robust instrument for assessing students' knowledge gain. PCA identified that the UBET comprised two sub-scales (theoretical knowledge base - Q 1, 2 & 3 and psychosocial elements of care delivery - Q 4, 5 & 6). Data has shown that the easy to administer and short 6-item UBET is a valid and reliable tool for educators to measure success at delivering education using the "Shaping bereavement care for midwives in clinical practice" work book. Copyright © 2012 Elsevier Ltd. All rights reserved.

Families' Views of Pediatric Palliative Aquatics: A Qualitative Study.

Science.gov (United States)

Gaab, Erin; Steinhorn, David M

2015-08-01

Although pediatric palliative care policies and services have been developed, research in this area continues to lag. An integrated model of palliative care has been suggested by the American Academy of Pediatrics and includes complementary and alternative services aimed at improving the well-being of children and their families. The first-known pediatric palliative aquatics program (PPAP) in California uses several techniques to decrease pain and promote well-being through relaxation and interaction between patients, specialists, and family members. This study investigates the perceptions of family members of their children's experiences with a PPAP. Researchers from an outside institution conducted focus groups and interviews. Themes were extracted from the focus group transcripts using Braun and Clarke's method of inductive thematic analysis. Data were collected at the host site, local libraries, and participant homes. Participants were primary caregivers and siblings (n = 23) of children in a PPAP, an independent children's respite, transitional, and end-of-life care facility in California. The research described and drew implications from the diverse perceptions that family members expressed about the benefits of having a child in the PPAP, including sensory, physical, and social experiences. Although the PPAP aims to promote well-being through relaxation, several other benefits were expressed by family members of children going through the program, including pain relief. Published by Elsevier Inc.

Fatigue in Advanced Cancer Patients: Congruence Between Patients and Their Informal Caregivers About Patients' Fatigue Severity During Cancer Treatment With Palliative Intent and Predictors of Agreement.

Science.gov (United States)

Poort, Hanneke; Peters, Marlies E W J; Gielissen, Marieke F M; Verhagen, Constans A H H V M; Bleijenberg, Gijs; van der Graaf, Winette T A; Wearden, Alison J; Knoop, Hans

2016-09-01

Informal caregivers (ICs) are increasingly involved in the monitoring of symptoms during advanced cancer patients' treatment with palliative intent. A common but subjective symptom during this extended treatment phase is fatigue. This exploratory longitudinal study aimed to determine agreement between patients and ICs about patients' fatigue severity. In addition, predictors of agreement over time were studied. A sample of 107 patients with advanced cancer (life expectancy ≥ six months) and their ICs completed the subscale fatigue severity of the Checklist Individual Strength based on the patient's status at baseline and six months later. This eight-item subscale has a validated cutoff to determine the presence of clinically relevant levels of fatigue. ICs' own fatigue severity, strain, self-esteem, and relationship satisfaction were examined as predictors of agreement. A total of 107 dyads completed measures at baseline and 69 dyads six months later. At baseline, ICs' significantly overestimated patients' fatigue severity (P congruence about the presence or absence of severe fatigue. On a group level, congruence did not significantly change over time. On a dyad level, there was a tendency to either remain congruent or reach congruence. Next to baseline congruence, ICs' fatigue severity and strain predicted ICs' fatigue ratings (R(2) = 0.22). Most ICs accurately predict presence or absence of clinically relevant levels of patients' fatigue. ICs' own fatigue severity and strain should be taken into account as they influence agreement. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

SYMPTOM AND FUNCTIONAL TRAITS OF BRIEF MAJOR DEPRESSIVE EPISODES AND DISCRIMINATION OF BEREAVEMENT.

Science.gov (United States)

McCabe, Patrick J; Christopher, Paul P

2016-02-01

Despite the removal of the bereavement exclusion from DSM-5, clinicians may feel uncertain on how to proceed when caring for a patient who presents with depressive symptoms following the death of someone close. The ability to better distinguish, on a symptom and functional level, between patients who experience depression in the context of bereavement and those with nonbereavement-related depression, could help guide clinical decision making. Individual and clustered depressive symptom and impairment measures were used for modeling bereavement status within a nationally representative longitudinal cohort. Deviance, linear shrinkage factor, and bias-corrected c-statistic were used for identifying a well-calibrated and discriminating final model. Of the 450 (1.2%) respondents with a single brief major depressive episode, 162 (38.4%) reported the episode as bereavement-related. The bereaved were less likely to endorse worthlessness (P depressive episodes following the death of a loved one from other brief episodes. These differences can help guide clinical care of patients who present with depressive symptoms shortly after a loved one's death. © 2015 Wiley Periodicals, Inc.

Qualitative Study on the Perceptions of Terminally Ill Cancer Patients and Their Family Members Regarding End-of-Life Experiences Focusing on Palliative Sedation.

Science.gov (United States)

Eun, Young; Hong, In-Wha; Bruera, Eduardo; Kang, Jung Hun

2017-06-01

Patients with terminal cancer experience refractory symptoms in the last days of life. Although palliative sedation (PS) is recommended for patients suffering unbearable symptoms with imminent death, it requires clear communication between physicians and patients/caregivers. Understanding the demands and perceptions of patients and caregivers in the end-of-life phase are needed for effective communication. To explore patient experiences regarding end-of-life status and PS. The study was performed between October and December, 2013 with eligible terminal cancer patients and their families in a non-religious, tertiary healthcare facility in Korea. Eligibility criteria were a hospitalized cancer patient with a life expectancy of less than three months and who had never experienced PS. Data were collected via face-to-face in-depth interviews and analyzed using the constant comparative method of qualitative analysis. Saturation was achieved after conducting interviews with 13 patients or care-giving family members. Enrolled patients raised the following issues: 1) simultaneously harboring the hope of prolonging life and wishing for a peaceful death, 2) experiencing difficulties in having honest conversations with caregivers regarding death, 3) possessing insufficient knowledge and information regarding PS, and 4) hoping for the decision on PS to be made before suffering becomes too great. Terminally ill cancer patients and their caregivers expressed conflicting desires in hoping to prolong life and simultaneously wishing to experience a peaceful death. Improvements in the communications that occur among physicians, patients, and caregivers on the issues of prognosis and PS are needed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Is rumination after bereavement linked with loss avoidance? : Evidence from eye-tracking

NARCIS (Netherlands)

Eisma, Maarten C.; Schut, Henk A.W.; Stroebe, Margaret; van den Bout, Jan; Stroebe, Wolfgang; Boelen, Paul A.

Rumination is a risk factor in adjustment to bereavement. It is associated with and predicts psychopathology after loss. Yet, the function of rumination in bereavement remains unclear. In the past, researchers often assumed rumination to be a maladaptive confrontation process. However, based on

Parents bereaved by infant death

DEFF Research Database (Denmark)

Christiansen, Dorte M.; Elklit, Ask; Olff, Miranda

2013-01-01

stress disorder (PTSD) symptoms and potential correlates in 634 mothers and fathers up to 18 years (M=3.4 years) after the death of their infant. Members of a private national support organization for parents bereaved by infant death were contacted and asked to participate in the study. Participants...

Decision Making Regarding the Place of End-of-Life Cancer Care: The Burden on Bereaved Families and Related Factors.

Science.gov (United States)

Yamamoto, Sena; Arao, Harue; Masutani, Eiko; Aoki, Miwa; Kishino, Megumi; Morita, Tatsuya; Shima, Yasuo; Kizawa, Yoshiyuki; Tsuneto, Satoru; Aoyama, Maho; Miyashita, Mitsunori

2017-05-01

Decision making regarding the place of end-of-life (EOL) care is an important issue for patients with terminal cancer and their families. It often requires surrogate decision making, which can be a burden on families. To explore the burden on the family of patients dying from cancer related to the decisions they made about the place of EOL care and investigate the factors affecting this burden. This was a cross-sectional mail survey using a self-administered questionnaire. Participants were 700 bereaved family members of patients with cancer from 133 palliative care units in Japan. The questionnaire covered decisional burdens, depression, grief, and the decision-making process. Participants experienced emotional pressure as the highest burden. Participants with a high decisional burden reported significantly higher scores for depression and grief (both P decision making without knowing the patient's wishes and values (P making the decision because of a due date for discharge from a former facility or hospital (P = 0.005). Decision making regarding the place of EOL care was recalled as burdensome for family decision makers. An early decision-making process that incorporates sharing patients' and family members' values that are relevant to the desired place of EOL care is important. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Position Statement: Palliative Care for Children.

Science.gov (United States)

Death Studies, 1993

1993-01-01

Notes that International Work Group on Death, Dying, and Bereavement recognizes wide variation of attitudes, beliefs, and behaviors pertaining to childhood death, dying, and bereavement. Statement identifies set of assumptions which can serve as guidelines, across cultures, in care of children with terminal illness and their families. (Author/NB)

General practitioners’ beliefs and attitudes about how to respond to death and bereavement: qualitative study

Science.gov (United States)

Saunderson, Eric M; Ridsdale, Leone

1999-01-01

Objectives To investigate the perceptions of general practitioners when they are notified or hear of a death or bereavement in their practice; to explore doctors’ accounts of their relationships with their patients in the context of bereavement; and to explore the concerns of general practitioners in managing themselves and bereaved patients. Design Semistructured interviews followed by qualitative content analysis. Setting London borough of Redbridge. Participants 25 general practitioners. Results Almost all the doctors had felt guilty about issues relating to the death of patients. These feelings were based on their expectations of not making mistakes and diagnostic precision. They described a culture gap existing between hospital and general practice and a need to develop new models and methods to explain and manage the causes of illness presented to them. In the absence of useful teaching on bereavement, many devised strategies which relied more on their personal experiences. General practitioners used various methods to contact bereaved patients, especially if they had been involved in the terminal care or if the death was particularly shocking. The doctor was also bereaved by the death of well known patients and sometimes needed to grieve and express emotion. Conclusion General practitioners may need support and learning methods to manage their own and their patients’ bereavement. Key messagesMost general practitioners fear making mistakes because they have a model of diagnostic precision based on their initial professional medical socialisationDoctors differ in their approaches to bereavement managementThe techniques developed by doctors to manage the immediate phase of bereavement stem from personal experience rather than medical trainingGeneral practitioners may need to express their own grief at the loss of a patient and a relationshipGeneral practice needs to develop its own models to reduce the stress felt by practitioners PMID:10426743

Creating philanthropic foundations to deal with grief: case studies of bereaved parents.

Science.gov (United States)

Rossetto, Kelly R

2014-01-01

The current study involves the analysis of six bereaved parents' stories and argues that the development of philanthropic foundations helped these parents make meaning of their children's deaths and find purpose in the midst of their grief. Furthermore, philanthropy, as a way of making meaning and finding purpose, is a mutually beneficial process because it helps both the bereaved founders and the communities the organizations reach. Connections between these narratives and the bereavement literature help us better understand the individual/family grief process and meaning making, as well as how internal grief states intersect with communities.

Effects of online palliative care training on knowledge, attitude and satisfaction of primary care physicians.

Science.gov (United States)

Pelayo, Marta; Cebrián, Diego; Areosa, Almudena; Agra, Yolanda; Izquierdo, Juan Vicente; Buendía, Félix

2011-05-23

The Spanish Palliative Care Strategy recommends an intermediate level of training for primary care physicians in order to provide them with knowledge and skills. Most of the training involves face-to-face courses but increasing pressures on physicians have resulted in fewer opportunities for provision of and attendance to this type of training. The effectiveness of on-line continuing medical education in terms of its impact on clinical practice has been scarcely studied. Its effect in relation to palliative care for primary care physicians is currently unknown, in terms of improvement in patient's quality of life and main caregiver's satisfaction. There is uncertainty too in terms of any potential benefits of asynchronous communication and interaction among on-line education participants, as well as of the effect of the learning process.The authors have developed an on-line educational model for palliative care which has been applied to primary care physicians in order to measure its effectiveness regarding knowledge, attitude towards palliative care, and physician's satisfaction in comparison with a control group.The effectiveness evaluation at 18 months and the impact on the quality of life of patients managed by the physicians, and the main caregiver's satisfaction will be addressed in a different paper. Randomized controlled educational trial to compared, on a first stage, the knowledge and attitude of primary care physicians regarding palliative care for advanced cancer patients, as well as satisfaction in those who followed an on-line palliative care training program with tutorship, using a Moodle Platform vs. traditional education. 169 physicians were included, 85 in the intervention group and 84 in the control group, of which five were excluded. Finally 82 participants per group were analyzed. There were significant differences in favor of the intervention group, in terms of knowledge (mean 4.6; CI 95%: 2.8 to 6.5 (p = 0.0001), scale range 0-33), confidence

Effects of online palliative care training on knowledge, attitude and satisfaction of primary care physicians

Directory of Open Access Journals (Sweden)

Agra Yolanda

2011-05-01

Full Text Available Abstract Background The Spanish Palliative Care Strategy recommends an intermediate level of training for primary care physicians in order to provide them with knowledge and skills. Most of the training involves face-to-face courses but increasing pressures on physicians have resulted in fewer opportunities for provision of and attendance to this type of training. The effectiveness of on-line continuing medical education in terms of its impact on clinical practice has been scarcely studied. Its effect in relation to palliative care for primary care physicians is currently unknown, in terms of improvement in patient's quality of life and main caregiver's satisfaction. There is uncertainty too in terms of any potential benefits of asynchronous communication and interaction among on-line education participants, as well as of the effect of the learning process. The authors have developed an on-line educational model for palliative care which has been applied to primary care physicians in order to measure its effectiveness regarding knowledge, attitude towards palliative care, and physician's satisfaction in comparison with a control group. The effectiveness evaluation at 18 months and the impact on the quality of life of patients managed by the physicians, and the main caregiver's satisfaction will be addressed in a different paper. Methods Randomized controlled educational trial to compared, on a first stage, the knowledge and attitude of primary care physicians regarding palliative care for advanced cancer patients, as well as satisfaction in those who followed an on-line palliative care training program with tutorship, using a Moodle Platform vs. traditional education. Results 169 physicians were included, 85 in the intervention group and 84 in the control group, of which five were excluded. Finally 82 participants per group were analyzed. There were significant differences in favor of the intervention group, in terms of knowledge (mean 4.6; CI

Palliative Care in Romania.

Science.gov (United States)

Mosoiu, Daniela; Mitrea, Nicoleta; Dumitrescu, Malina

2018-02-01

HOSPICE Casa Sperantei has been pioneering palliative care development in Romania since 1992. The have developed specialist palliative care services in home-based settings, inpatient units, day care centers, and as hospital support teams. They have provided national and international education programs for professionals in the palliative care field, as well as promoting palliative care integration in the health care system. Legislative improvements were adopted, including funding mechanisms for the reimbursement of palliative care services through the health insurance funds, review of opioid policy, and quality standards of care. By the end of 2015, Romania had 115 specialist palliative care services (78 palliative care inpatient units, 24 home-based palliative care services, five outpatient palliative care clinics, four day care centers, and four hospital support teams). A palliative care subspecialty for doctors was recognized as early as 2000, and a multidisciplinary master's degree program has been available at Transilvania University since 2010, when the first palliative care academic position was established. Nursing education includes mandatory palliative care modules in nursing schools. For coordinated development of palliative care at the national level, a national strategy was proposed defining three levels of palliative care provision, local, district, and national. The implementation of the palliative care strategy is partially funded through a World Bank loan. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

The Experience of Chinese Bereaved Persons: A Preliminary Study of Meaning Making and Continuing Bonds

Science.gov (United States)

Chan, Cecilia L. W.; Chow, Amy Y. M.; Ho, Samuel M. Y.; Tsui, Yenny K. Y.; Tin, Agnes F.; Koo, Brenda W. K.; Koo, Elaine W. K.

2005-01-01

This study explores the bereavement process of Chinese persons in Hong Kong, with the focus on how they make meaning of the death as well as how they maintain a bond with the deceased. A review of video- and audiotapes of 52 bereaved persons in bereavement counseling pointed to how these concepts are reflected in key themes that appeared…

A new model of Social Support in Bereavement (SSB): An empirical investigation with a Chinese sample.

Science.gov (United States)

Li, Jie; Chen, Sheying

2016-01-01

Bereavement can be an extremely stressful experience while the protective effect of social support is expected to facilitate the adjustment after loss. The ingredients or elements of social support as illustrated by a new model of Social Support in Bereavement (SSB), however, requires empirical evidence. Who might be the most effective providers of social support in bereavement has also been understudied, particularly within specific cultural contexts. The present study uses both qualitative and quantitative analyses to explore these two important issues among bereaved Chinese families and individuals. The results show that three major types of social support described by the SSB model were frequently acknowledged by the participants in this study. Aside from relevant books, family and friends were the primary sources of social support who in turn received support from their workplaces. Helping professionals turned out to be the least significant source of social support in the Chinese cultural context. Differences by gender, age, and bereavement time were also found. The findings render empirical evidence to the conceptual model of Social Support in Bereavement and also offer culturally relevant guidance for providing effective support to the bereaved.

Family members' caregiving situations in palliative home care when sitting service is received: The understanding of multiple realities.

Science.gov (United States)

Wallerstedt, Birgitta; Andershed, Birgitta; Benzein, Eva

2014-12-01

To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service. Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregation. Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received. Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.

The forgotten children of Africa: Voicing HIV and Aids orphans’ stories of bereavement: a narrative approach

OpenAIRE

Amanda Richter; Julian Müller

2005-01-01

This article looks at the bereavement of children left orphaned by the HIV and Aids pandemic that is crippling the continent of Africa. Their bereavement is examined by means of the narrative approach and by integrating this approach with the traditional African art of storytelling. By listening to the stories of three Zulu children, the article gives them the opportunity to express their own unique stories of bereavement: stories that would otherwise have been silenced by the wave of bereave...

Support groups for children and adolescents bereaved by suicide: Lots of interventions, little evidence.

Science.gov (United States)

Journot-Reverbel, Katia; Raynaud, Jean-Philippe; Bui, Eric; Revet, Alexis

2017-04-01

Though many different interventions are proposed for suicide-bereaved children and adolescents, few data exist concerning their efficiency. This literature review focused on psychosocial interventions specifically targeting children and adolescents bereaved by suicide to try to provide some validate therapeutic guidelines propositions for clinicians. We only found two articles specifically targeting children or adolescents: both of them seemed to show some efficacy in reducing some psychosocial variables (anxiety, depression…) in suicide-bereaved children but results were limited by methodological problems. This review failed to provide evidence-based guidelines propositions for suicide-bereaved children and underline the crucial need for research in this field. Copyright © 2017 Elsevier Ireland Ltd. All rights reserved.

Happy to Talk...To a Point: Bereaved Young Men and Emotional Disclosure

Science.gov (United States)

McNess, Andrew

2008-01-01

This study focuses upon the social experiences of bereaved young men, with particular emphasis on the social costs of bereavement-related personal disclosure. Their experiences of regulating their social behaviour were suggestive of the persistence of "traditional" notions of masculine identity (e.g. hegemonic masculinity). While this…

The impact of bereaved parents' perceived grief similarity on relationship satisfaction.

Science.gov (United States)

Buyukcan-Tetik, Asuman; Finkenauer, Catrin; Schut, Henk; Stroebe, Margaret; Stroebe, Wolfgang

2017-06-01

The present research focused on bereaved parents' perceived grief similarity, and aimed to investigate the concurrent and longitudinal effects of the perceptions that the partner has less, equal, or more grief intensity than oneself on relationship satisfaction. Participants of our longitudinal study were 229 heterosexual bereaved Dutch couples who completed questionnaires 6, 13, and 20 months after the loss of their child. Average age of participants was 40.7 (SD = 9.5). Across 3 study waves, participants' perceived grief similarity and relationship satisfaction were assessed. To control for their effects, own grief level, child's gender, expectedness of loss, parent's age, parent's gender, and time were also included in the analyses. Consistent with the hypotheses, cross-sectional results revealed that bereaved parents who perceived dissimilar levels of grief (less or more grief) had lower relationship satisfaction than bereaved parents who perceived similar levels of grief. This effect remained significant controlling for the effects of possible confounding variables and actual similarity in grief between partners. We also found that perceived grief similarity at the first study wave was related to the highest level of relationship satisfaction at the second study wave. Moreover, results showed that perceived grief similarity was associated with a higher level in partner's relationship satisfaction. Results are discussed considering the comparison and similarity in grief across bereaved partners after child loss. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Perinatal death: bereavement interventions used by US and Spanish nurses and midwives.

Science.gov (United States)

Steen, Sue E

2015-02-01

Little research has been published from a global perspective regarding needs of nurses and midwives related to perinatal bereavement. To identify needs and concerns of US and Spanish nurses and midwives who have worked with perinatal death and to identify the bereavement interventions they use to help families with this experience. A cross-sectional study was conducted. Data were collected in 2011 from US (n=44) and Spanish (n=15) nurses and midwives via a questionnaire. Statistically significant differences between the nurses/midwives in each country were found regarding needs relating to knowledge, communication skills and managing personal feelings. Interventions of accompanying, listening, offering keepsakes, baptism discussion, and funeral planning were also found to be significantly different between the two groups. These findings demonstrate a continued need to increase the standard and consistency of perinatal bereavement care worldwide. Bereavement education in nursing curricula and practice settings in both cultures is essential to increase the standard of care.

Bereavement care interventions and outcome criteria planned by community nurses in the Canary Islands.

Science.gov (United States)

Rodríguez-Álvaro, Martín; García-Hernández, Alfonso Miguel; Brito-Brito, Pedro Ruymán; Aguirre-Jaime, Armando; Fernández-Gutiérrez, Domingo Ángel

2018-02-19

Nursing care in bereavement is complex. Primary health care is the ideal setting to support the bereaved, but we do not know much about the care plans designed by primary health care nurses in the treatment of grief. To identify the outcomes criteria and interventions planned by nurses for mourners with and without complications in the Canary Islands. Retrospective longitudinal study, using the electronic health records of the Canary Islands health service of people with a diagnosis of grieving, risk of complicated grieving and complicated grieving, in the period 2009-2014. NOC outcomes criteria were recorded in 67% of the mourners, and up to 24 different outcomes were identified. The main outcomes measures were Grief resolution; Psychosocial adjustment, Life change; Coping; Family coping; Family social climate and Caregiver emotional health. The remaining outcomes were present in less than 1% of the mourners. Although the outcomes criteria proposed by nurses in the mourners with and without complications were quite homogeneous, differences in interventions were found. In 67% of the cases, NIC interventions were reported. Ninety-nine different interventions were identified in the mourners; the most frequent were Emotional support; Grief work facilitation; Active listening; Coping enhancement and counselling. The remaining identified interventions were present in less than 5% of patients. The main interventions in the mourners with complications were Grief work facilitation; Coping enhancement; Active listening; Counselling and Family integrity promotion. Nurses state that there are more interventions and outcomes in mourners with complications. Given the few methodologically reliable studies that prove their effectiveness, continued research in this area is recommended. Copyright © 2017 Elsevier España, S.L.U. All rights reserved.

Cultural manifestations of grief and bereavement: a clinical perspective.

Science.gov (United States)

Hardy-Bougere, Marilyn

2008-01-01

The purpose of this article is to inform the reader that a commonality in grief and bereavement exists even though it is highly individualized. Health care providers and consumers of health care should realize and understand the potential for bias and miscommunication when there is delivery of care from non-similar cultures. Grief and bereavement are two of many issues existing in the health care delivery system which can result in substandard delivery of care as a result of cultural insensitivity and cultural incompetence.

Family caregiver preferences for patient decisional control among Hispanics in the United States and Latin America

Science.gov (United States)

Yennurajalingam, Sriram; Noguera, Antonio; Parsons, Henrique Afonseca; Torres-Vigil, Isabel; Duarte, Eva Rosina; Palma, Alejandra; Bunge, Sofia; Palmer, J. Lynn; Delgado-Guay, Marvin Omar; Bruera, Eduardo

2013-01-01

Background Understanding family caregivers’ decisional role preferences is important for communication, quality of care, and patient and family satisfaction. The family caregiver has an important role in a patient’s decisional role preferences. There are limited studies on family caregivers’ preferences of the patient’s decisional control at the end of life among Hispanics. Aims To identify Hispanic caregivers’ preferences of the decision control of patients with advanced cancer and to compare the preferences of caregivers in Latin America (HLA) and Hispanic American (HUSA) caregivers. Design We surveyed patients and their family caregivers referred to outpatient palliative care clinics in the United States, Chile, Argentina, and Guatemala. Caregiver preferences of patient’s decisional control were evaluated using the Control Preference Scale. Caregivers’ and patients’ socio-demographic variables, patient performance status, and HUSA patient acculturation level was also collected. Participants A total of 387 caregivers were surveyed: 100 (26%) in Chile, 99 (26%) in Argentina, 97 (25%) in Guatemala, and 91 (24%) in the United States. The median age was 56 years, and 59% were female. Results Caregiver preference of patients decisions control was passive, shared, and active by 10 (11%), 45 (52%) and 32 (37%) HUSA caregivers and 54 (19%), 178 (62%) and 55 (19%) HLA caregivers (p=0.0023). Caregiver acculturation level did not affect the preferences of the HUSA sample (p=0.60). Conclusions Most Hispanic family caregivers preferred the patient to make shared decisions. HLA caregivers preferred more frequently patients to assume a passive decisional role. Acculturation did not influence the preferences of HUSA caregivers. PMID:23670718

Understanding palliative care on the heart failure care team: an innovative research methodology.

Science.gov (United States)

Lingard, Lorelei A; McDougall, Allan; Schulz, Valerie; Shadd, Joshua; Marshall, Denise; Strachan, Patricia H; Tait, Glendon R; Arnold, J Malcolm; Kimel, Gil

2013-05-01

There is a growing call to integrate palliative care for patients with advanced heart failure (HF). However, the knowledge to inform integration efforts comes largely from interview and survey research with individual patients and providers. This work has been critically important in raising awareness of the need for integration, but it is insufficient to inform solutions that must be enacted not by isolated individuals but by complex care teams. Research methods are urgently required to support systematic exploration of the experiences of patients with HF, family caregivers, and health care providers as they interact as a care team. To design a research methodology that can support systematic exploration of the experiences of patients with HF, caregivers, and health care providers as they interact as a care team. This article describes in detail a methodology that we have piloted and are currently using in a multisite study of HF care teams. We describe three aspects of the methodology: the theoretical framework, an innovative sampling strategy, and an iterative system of data collection and analysis that incorporates four data sources and four analytical steps. We anticipate that this innovative methodology will support groundbreaking research in both HF care and other team settings in which palliative integration efforts are emerging for patients with advanced nonmalignant disease. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Family Relationships and Psychosocial Dysfunction Among Family Caregivers of Patients With Advanced Cancer.

Science.gov (United States)

Nissen, Kathrine G; Trevino, Kelly; Lange, Theis; Prigerson, Holly G

2016-12-01

Caring for a family member with advanced cancer strains family caregivers. Classification of family types has been shown to identify patients at risk of poor psychosocial function. However, little is known about how family relationships affect caregiver psychosocial function. To investigate family types identified by a cluster analysis and to examine the reproducibility of cluster analyses. We also sought to examine the relationship between family types and caregivers' psychosocial function. Data from 622 caregivers of advanced cancer patients (part of the Coping with Cancer Study) were analyzed using Gaussian Mixture Modeling as the primary method to identify family types based on the Family Relationship Index questionnaire. We then examined the relationship between family type and caregiver quality of life (Medical Outcome Survey Short Form), social support (Interpersonal Support Evaluation List), and perceived caregiver burden (Caregiving Burden Scale). Three family types emerged: low-expressive, detached, and supportive. Analyses of variance with post hoc comparisons showed that caregivers of detached and low-expressive family types experienced lower levels of quality of life and perceived social support in comparison to supportive family types. The study identified supportive, low-expressive, and detached family types among caregivers of advanced cancer patients. The supportive family type was associated with the best outcomes and detached with the worst. These findings indicate that family function is related to psychosocial function of caregivers of advanced cancer patients. Therefore, paying attention to family support and family members' ability to share feelings and manage conflicts may serve as an important tool to improve psychosocial function in families affected by cancer. Copyright © 2016 American Academy of Hospice and Palliative Medicine. All rights reserved.

Day-to-day care in palliative sedation: survey of nurses' experiences with decision-making and performance.

Science.gov (United States)

Arevalo, Jimmy J; Rietjens, Judith A; Swart, Siebe J; Perez, Roberto S G M; van der Heide, Agnes

2013-05-01

Continuous palliative sedation has been the focus of extensive international debates in the field of end-of-life decision making. Although nurses may be important participants in the performance of continuous palliative sedation, research has focused primarily on the role and experience of physicians. Nurses' experiences differ from that of physicians; they more often describe that continuous palliative sedation is used with the intention of hastening death and to have experienced serious emotional burden. Therefore, it is important to understand the experience of nurses in continuous palliative sedation. To describe nurses' experiences with the decision-making and performance of continuous palliative sedation in terminally ill patients. Cross-sectional study. In 2008, a structured questionnaire was sent to 576 nurses in six professional home care organizations, ten units for palliative care in nursing homes and in-patient hospices and seven hospitals in the western region of the Netherlands. Respondents provided information about the last patient receiving continuous palliative sedation whom they had cared for. Two-hundred seventy-seven questionnaires were returned and 199 (71.84%) reported a case of continuous palliative sedation. Nurses felt involved in the decision to use sedation in 84% of cases, albeit to a lesser extent in home care (68.75%, p=0.002). They agreed with the performance of continuous palliative sedation in 95.97% of cases and they proposed the use of continuous palliative sedation in 16.16%. Nurses were present at the start of sedation in 81.40% of cases and reported physicians to be present in 45.22%. In 72.77%, arrangements had been made among caregivers about the coordination of health care regarding the sedation. Nurses seem to play an important role in the use of continuous sedation. This role is mainly supportive toward physicians and patients during the decision-making process, but shifts to an active performance of sedation

Effects of euthanasia on the bereaved family and friends: a cross sectional study.

Science.gov (United States)

Swarte, Nikkie B; van der Lee, Marije L; van der Bom, Johanna G; van den Bout, Jan; Heintz, A Peter M

2003-07-26

To assess how euthanasia in terminally ill cancer patients affects the grief response of bereaved family and friends. Cross sectional study. Tertiary referral centre for oncology patients in Utrecht, the Netherlands. 189 bereaved family members and close friends of terminally ill cancer patients who died by euthanasia and 316 bereaved family members and close friends of comparable cancer patients who died a natural death between 1992 and 1999. Symptoms of traumatic grief assessed by the inventory of traumatic grief, current feelings of grief assessed by the Texas revised inventory of grief, and post-traumatic stress reactions assessed by the impact of event scale. The bereaved family and friends of cancer patients who died by euthanasia had less traumatic grief symptoms (adjusted difference -5.29 (95% confidence interval -8.44 to -2.15)), less current feeling of grief (adjusted difference 2.93 (0.85 to 5.01)); and less post-traumatic stress reactions (adjusted difference -2.79 (-5.33 to -0.25)) than the family and friends of patients who died of natural causes. These differences were independent of other risk factors. The bereaved family and friends of cancer patients who died by euthanasia coped better with respect to grief symptoms and post-traumatic stress reactions than the bereaved of comparable cancer patients who died a natural death. These results should not be interpreted as a plea for euthanasia, but as a plea for the same level of care and openness in all patients who are terminally ill.

Piloting a Therapeutic Residential for Children, Young People and Families Bereaved through Suicide in Northern Ireland

Science.gov (United States)

Braiden, Hannah Jane; McCann, Monica; Barry, Helen; Lindsay, Carrie

2009-01-01

Families bereaved by suicide can experience an extremely intense and complicated grieving process. This can be associated with a range of difficulties and can put bereaved family members at risk of a range of problems. In recognition of this, Barnardo's Child Bereavement Service piloted a two-day residential programme (integrating separate…

The associations between religion, bereavement and depression among Hong Kong nurses.

Science.gov (United States)

Cheung, Teris; Lee, Paul H; Yip, Paul S F

2017-07-04

This paper is to examine the associations between religion, bereavement and depression among nursing professionals using a cross-sectional survey design. There is little empirical evidence in Asia suggesting that religion may either increase or lower the likelihood of nursing professionals being depressed. We analyzed the results of a Mental Health Survey soliciting data from 850 Hong Kong nurses (aged 21-59, 178 males) regarding their mental well-being and associated factors, including participants' socio-economic profile and recent life-events. Multiple linear regression analyses examined associations between religion, bereavement and depression. Religious faith is weakly associated with lower self-reported depression in bereavement. Our findings confirm those studies suggesting that religion positively affects mental health and yet healthcare providers have yet to assimilate this insight.

When palliative treatment achieves more than palliation: Instances of long-term survival after palliative radiotherapy

Directory of Open Access Journals (Sweden)

Madhup Rastogi

2012-01-01

Full Text Available Context: Palliative radiotherapy aims at symptom alleviation and improvement of quality of life. It may be effective in conferring a reasonable quantum of local control, as well as possibly prolonging survival on the short term. However, there can be rare instances where long-term survival, or even cure, results from palliative radiotherapy, which mostly uses sub-therapeutic doses. Aim: To categorize and characterize the patients with long-term survival and/or cure after palliative radiotherapy. Materials and Methods: This study is a retrospective analysis of hospital records of patients treated with palliative radiotherapy from 2001 to 2006 at the Regional Cancer Centre, Shimla. Results: Of the analyzed 963 patients who received palliative radiotherapy, 2.4% (n = 23 survived at least 5 years, with a large majority of these surviving patients (73.9%, n = 17 being free of disease. Conclusions: In addition to providing valuable symptom relief, palliative radiotherapy utilizing sub-therapeutic doses may, in a small proportion of patients, bestow long-term survival, and possibly cure. Rationally, such a favorable, but rare outcome cannot be expected with supportive care alone.

Can individuals who are specialists in death, dying, and bereavement contribute to the prevention and/or mitigation of armed conflicts and cycles of violence?

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Parkes, Colin Murray; Attig, Thomas; Bendiksen, Robert; Cabrera, Fernando; Corr, Charles; Cox, Gerry; Faust, Susanna; Fulton, Robert; Jupp, Peter; Kallenberg, Kjell; Lamers, Elizabeth; Lamers, William; Long, Scott; McKissock, Diane; McKissock, Mal; Morgan, Mary Ann; Papadatou, Danai; Stevenson, Robert; Stoddard, Sandol; Weiss, Robert; Wrenn, Marcy

2011-01-01

Specialists in death, dying, and bereavement and their consequences for individuals, families, and communities have experience and research findings that are relevant to an understanding of the reactions of individuals faced by deadly violence. At such times, powerful emotions and ingrained patterns of thought and behavior can given rise to disproportionate responses that may feed into cycles of violence. An extended table shows how professionals helping individuals and families faced with violent death share common aims with those aiming to help larger social units faced with armed attacks. It follows that these professionals should work together to improve death education, to prepare people for possible deadly violence and, where possible, to suggest alternatives, to create secure places and relationships in which communication becomes possible, bad news can be broken and understood, feelings examined, differences reconciled, and people can redirect anger into the prevention of escalation rather than its perpetuation. All of these activities hold out hope that cycles of deadly violence can be broken as well as mitigating the consequences when they are not. The undoubted success of the worldwide palliative care movement resulted from the recognition of serious deficiencies in existing services, the provision of an inclusive, holistic, program that extends across medical, social psychological, and spiritual realms of discourse, providing care for patients and their families, irrespective of wealth, race, religion, and political persuasion, by dedicated leaders and teams backed by education and information services and organized across geographical boundaries. It is argued here that the time is ripe for a similar commitment to bring to an end the scandal of armed conflict by a similarly multidisciplinary, multicultural effort to relieve the suffering that both causes and results from armed conflict. This must remain independent of race, religion, political

Home-based palliative care: challenges in the care of technology-dependent children.

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Floriani, Ciro A

2010-01-01

To conceptualize palliative care and its indications in Pediatrics; to describe the difficulties involved in the delivery of such care at home for technology-dependent children; and to analyze, from a bioethical perspective, the moral dilemmas of palliative care assistance. A literature review of palliative care for technology-dependent children and a bioethical analysis of moral dilemmas. There are several obstacles to palliative care for technology-dependent children: structural difficulties at home; social isolation of both children and families; health professionals' sense of disbelief regarding this type of care; an excessive number of medical devices at home; uncertainty of a terminal prognosis; physical, emotional, social, material, and financial burden for parents and family; changes in family dynamics to adjust to these children; paternalistic relationship between professionals and family; changes in family roles, with shifts in the caregiver role. It is essential to outline an agenda based on the premise that the medical apparatus for technology-dependent children will change the landscape of the home, and such a change might become a problem to be faced by all those living together. Based on this assumption, actions performed in a setting other than a health care facility might exert an actual protective effect on children and family, offering support in their several needs and developing a model of care delivery that includes interventions in the different levels of burden on these vulnerated and unprotected individuals.

Emotion regulation in bereavement: searching for and finding emotional support in social network sites

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Döveling, Katrin

2015-04-01

In an age of rising impact of online communication in social network sites (SNS), emotional interaction is neither limited nor restricted by time or space. Bereavement extends to the anonymity of cyberspace. What role does virtual interaction play in SNS in dealing with the basic human emotion of grief caused by the loss of a beloved person? The analysis laid out in this article provides answers in light of an interdisciplinary perspective on online bereavement. Relevant lines of research are scrutinized. After laying out the theoretical spectrum for the study, hypotheses based on a prior in-depth qualitative content analysis of 179 postings in three different German online bereavement platforms are proposed and scrutinized in a quantitative content analysis (2127 postings from 318 users). Emotion regulation patterns in SNS and similarities as well as differences in online bereavement of children, adolescents and adults are revealed. Large-scale quantitative findings into central motives, patterns, and restorative effects of online shared bereavement in regulating distress, fostering personal empowerment, and engendering meaning are presented. The article closes with implications for further analysis in memorialization practices.

Palliative sedation for terminally ill cancer patients in a tertiary cancer center in Shanghai, China.

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Gu, Xiaoli; Cheng, Wenwu; Chen, Menglei; Liu, Minghui; Zhang, Zhe

2015-01-01

There are a number of studies dedicated to characteristics of sedation, but these studies are mostly bound to western country practices. The aim of this study is to describe the characteristics of patients who suffered from cancer and who had been sedated until their death in Shanghai, China. Retrospective medical data of 244 terminally ill cancer patients including 82 sedated patients were collected. Data collected included demographic characteristics, disease-related characteristics and details of the sedation. In sedated cases, patients and/or caregivers gave the consent to start palliative sedation due to unmanageable symptoms. On average, sedation was performed 24.65(±1.78)hours before death. Agitated delirium and dyspnea were the most frequent indications for palliative sedation. There was no significant difference in survival time from admission till death between sedated and non-sedated patients (p > 0.05). Palliative sedation is effective for reducing terminally ill cancer patients' suffering without hastening death. Prospective research is needed to determine the optimal conditions for Chinese patients including indications, decision making process, informed consent, cultural and ethical issues, type of sedation and drugs.

Recovery in Context: Bereavement, Culture, and the Transformation of the Therapeutic Self

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Paletti, Robin

2008-01-01

The concept of recovery is integral to the work of bereavement professionals, though there remains considerable debate as to the precise definition and applicability of the term. A number of factors have contributed to the controversy; competing bereavement models, for instance, have given rise to fundamental differences in the way that recovery…

Extending the construct validity of dependency among conjugally bereaved adults.

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Denckla, Christy A; Bornstein, Robert F; Mancini, Anthony D; Bonanno, George A

2015-06-01

The Relationship Profile Test is a widely used measure of dependency, detachment, and healthy dependency that has been examined in both clinical and nonclinical settings, though researchers have yet to validate this measure among conjugally bereaved adults. The present study examines the construct validity of a three-facet model of dependency-detachment by comparing relationships among self-report, semistructured interview-rated, and knowledgeable informant-rated functioning among conjugally bereaved adults. Participants (N = 112) included bereaved adults (M = 51.1 years; SD = 9.7) who had experienced the loss of a spouse 1.5 to 3 years prior to taking part in this study. Findings indicate adequate psychometric properties and theoretically expected associations with various measures of wellness and health including satisfaction with life, coping flexibility, somatic complaints, and ego resiliency. Results draw attention to adaptive correlates of dependency, suggesting potentially beneficial mental health interventions. © The Author(s) 2014.

Offspring psychopathology following preconception, prenatal, and postnatal maternal bereavement stress

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Class, Quetzal A.; Abel, Kathryn M.; Khashan, Ali S.; Rickert, Martin E.; Dalman, Christina; Larsson, Henrik; Hultman, Christina M.; Långström, Niklas; Lichtenstein, Paul; D’Onofrio, Brian M.

2013-01-01

Background Preconception, prenatal, and postnatal maternal stress are associated with increased offspring psychopathology, but findings are inconsistent and need replication. We estimated associations between maternal bereavement stress and offspring autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), bipolar disorder, schizophrenia, suicide attempt, and completed suicide. Methods Using Swedish registers, we conducted the largest population-based study to date examining associations between stress exposure in 738,144 offspring born 1992–2000 for childhood outcomes and 2,155,221 offspring born 1973–1997 for adult outcomes with follow-up through 2009. Maternal stress was defined as death of a first degree relative during 6 months before conception, across pregnancy, or the first two postnatal years. Cox proportional survival analyses were used to obtain hazard ratios (HR) in unadjusted and adjusted analyses. Results Marginal increased risk of bipolar disorder and schizophrenia following preconception bereavement stress was not significant. Third trimester prenatal stress increased risk of ASD (adjusted HR=1.58, 95% CI: 1.15–2.17) and ADHD (adjusted HR=1.31, 95% CI: 1.04–1.66). First postnatal year stress increased risk for offspring suicide attempt (adjusted HR=1.13, 95% CI: 1.02–1.25) and completed suicide (adjusted HR=1.51, 95% CI: 1.08–2.11). Bereavement stress during the second postnatal year increased risk of ASD (adjusted HR=1.30, 95% CI: 1.09–1.55). Conclusions Further research is needed on associations between preconception stress and psychopathological outcomes. Prenatal bereavement stress increases risk of offspring ASD and ADHD. Postnatal bereavement stress moderately increases risk of offspring suicide attempt, completed suicide, and ASD. Smaller previous studies may have overestimated associations between early stress and psychopathological outcomes. PMID:23591021

Outdoor Education for Bereaved Children?

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Renner, Hans-Georg

2011-01-01

For many outdoor education providers, bereaved children and young people at first appear to be a new target audience. A new target audience naturally raises questions of programme planning and can give the provider a pressurised need to succeed: "Do I as the organiser have to develop a whole new programme?", "May I be required to provide some form…

Effectiveness of bereavement counselling through a community-based organization : A naturalistic, controlled trial

NARCIS (Netherlands)

Newsom, Catherine; Schut, Henk; Stroebe, Margaret S.; Wilson, Stewart; Birrell, John; Moerbeek, Mirjam; Eisma, Maarten C.

2017-01-01

This controlled, longitudinal investigation tested the effectiveness of a bereavement counselling model for adults on reducing complicated grief (CG) symptoms. Participants (N = 344; 79% female; mean age: 49.3 years) were adult residents of Scotland who were bereaved of a close relation or partner,

How adults with an intellectual disability experience bereavement and grief: a qualitative exploration.

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McRitchie, Robyn; McKenzie, Karen; Quayle, Ethel; Harlin, Margaret; Neumann, Katja

2014-01-01

This qualitative study explored the lived experiences of bereavement of 13 adults with an intellectual disability and found that their experiences could be situated within the concept of disenfranchised grief. The latter mediated participants' meaning making of the grieving process illustrated in the themes of intra- and interpersonal bereavement experiences, core beliefs about life and death, level of inclusion, and maintaining a continuing relationship with the deceased. The results suggest that participants experience bereavement and grief in a manner similar to that of the general population and suggest the need for open communication, facilitation of informed choice, and a culture of inclusion.

Parents’ Experiences of Suicide-Bereavement: A Qualitative Study at 6 and 12 Months after Loss

Directory of Open Access Journals (Sweden)

Victoria Ross

2018-03-01

Full Text Available The death of a child by suicide is a severe trauma, placing parents at greater risk of psychological morbidity and physical health problems compared to other causes of death. However, few studies have examined the aftermath and bereavement experience for parents following the death of a child to suicide, limiting the ability to guide effective postvention services through empirical research. The current study, which was part of a larger longitudinal investigation of suicide bereavement in Queensland, Australia, examined the individual experiences of both mothers and fathers bereaved by suicide over time, specifically at the six month and 12 month time points after their loss. Bereaved parents who had provided written consent to be contacted for research purposes were identified through the Queensland Suicide Register, and took part in individual, semi-structured interviews. Generic qualitative analysis identified three key themes: searching for answers and sense-making, coping strategies and support, and finding meaning and purpose. Some participants showed indications of meaning-making and post-traumatic growth at 12 months after the suicide. According to the dual process model of bereavement, it is likely that participants were still oscillating between sense-making and meaning making, indicating that adapting to bereavement is a dynamic and fluctuating process.

Palliative and end-of-life care for adults with advanced chronic obstructive pulmonary disease: a rapid review focusing on patient and family caregiver perspectives.

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Mathews, Gillian; Johnston, Bridget

2017-12-01

The aim of the review was to explore patient and family caregiver perspectives on key issues for ensuring quality of end-of-life care for people with chronic obstructive pulmonary disease (COPD). The growing evidence on the value of specialist palliative care services demonstrates significant improvements in treatments and provisions; however, much of the literature is generic in nature or centred on people with a cancer diagnosis. In this review, we examine the literature to ascertain the views and needs of patients and carers affected by advanced COPD, a highly debilitating condition that can have a profoundly negative impact on the quality of end-of-life experience. A total of 19 papers were included in the review. The main themes in the literature were Holistic Care, Illness Trajectory and Technology. Areas of unmet need emphasized across physical, psychosocial and spiritual domains were identified, particularly in relation to appropriate and timely conversations. Positive developments in the care and treatment of advanced COPD include the use of the STIOLTO Respimat inhaler, a brief educative and psychosocial intervention based on cognitive-behavioural therapy, and high-intensity exercise training. There is some evidence regarding the use of technology in end-stage COPD.

Traditional and Contemporary Lakota Death, Dying, Grief, and Bereavement Beliefs and Practices: A Qualitative Study

OpenAIRE

Stone, Joseph B.

1998-01-01

Bereavement beliefs and practices in the modern, American culture have been well documented. However, virtually no research has been conducted on traditional and contemporary death, dying, grief, and bereavement beliefs and practices among native tribes, such as the Lakota. The present study was conducted with the Lakota, and fulfilled two goals. iii First, the contemporary and traditional death, dying, grief, and bereavement beliefs and practices of the Lakota were documented and summariz...

An official American Thoracic Society workshop report: assessment and palliative management of dyspnea crisis.

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Mularski, Richard A; Reinke, Lynn F; Carrieri-Kohlman, Virginia; Fischer, Mark D; Campbell, Margaret L; Rocker, Graeme; Schneidman, Ann; Jacobs, Susan S; Arnold, Robert; Benditt, Joshua O; Booth, Sara; Byock, Ira; Chan, Garrett K; Curtis, J Randall; Donesky, Doranne; Hansen-Flaschen, John; Heffner, John; Klein, Russell; Limberg, Trina M; Manning, Harold L; Morrison, R Sean; Ries, Andrew L; Schmidt, Gregory A; Selecky, Paul A; Truog, Robert D; Wang, Angela C C; White, Douglas B

2013-10-01

In 2009, the American Thoracic Society (ATS) funded an assembly project, Palliative Management of Dyspnea Crisis, to focus on identification, management, and optimal resource utilization for effective palliation of acute episodes of dyspnea. We conducted a comprehensive search of the medical literature and evaluated available evidence from systematic evidence-based reviews (SEBRs) using a modified AMSTAR approach and then summarized the palliative management knowledge base for participants to use in discourse at a 2009 ATS workshop. We used an informal consensus process to develop a working definition of this novel entity and established an Ad Hoc Committee on Palliative Management of Dyspnea Crisis to further develop an official ATS document on the topic. The Ad Hoc Committee members defined dyspnea crisis as "sustained and severe resting breathing discomfort that occurs in patients with advanced, often life-limiting illness and overwhelms the patient and caregivers' ability to achieve symptom relief." Dyspnea crisis can occur suddenly and is characteristically without a reversible etiology. The workshop participants focused on dyspnea crisis management for patients in whom the goals of care are focused on palliation and for whom endotracheal intubation and mechanical ventilation are not consistent with articulated preferences. However, approaches to dyspnea crisis may also be appropriate for patients electing life-sustaining treatment. The Ad Hoc Committee developed a Workshop Report concerning assessment of dyspnea crisis; ethical and professional considerations; efficient utilization, communication, and care coordination; clinical management of dyspnea crisis; development of patient education and provider aid products; and enhancing implementation with audit and quality improvement.

Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians.

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Koper, Ian; van der Heide, Agnes; Janssens, Rien; Swart, Siebe; Perez, Roberto; Rietjens, Judith

2014-01-01

Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services. Fifty-four physicians were interviewed on their most recent case of palliative sedation. Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation. Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.

Can digital stories go where palliative care research has never gone before? A descriptive qualitative study exploring the application of an emerging public health research method in an indigenous palliative care context.

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Williams, Lisa; Gott, Merryn; Moeke-Maxwell, Tess; Black, Stella; Kothari, Shuchi; Pearson, Sarina; Morgan, Tessa; Wharemate, Matua Rawiri; Hansen, Whaea Whio

2017-09-04

The World Health Organization (WHO) has called for global approaches to palliative care development. Yet it is questionable whether one-size-fits-all solutions can accommodate international disparities in palliative care need. More flexible research methods are called for in order to understand diverse priorities at local levels. This is especially imperative for Indigenous populations and other groups underrepresented in the palliative care evidence-base. Digital storytelling (DST) offers the potential to be one such method. Digital stories are short first-person videos that tell a story of great significance to the creator. The method has already found a place within public health research and has been described as a useful, emergent method for community-based participatory research. The aim of this study was to explore Māori participants' views on DST's usefulness, from an Indigenous perspective, as a research method within the discipline of palliative care. The digital storytelling method was adapted to include Māori cultural protocols. Data capturing participant experience of the study were collected using participant observation and anonymous questionnaires. Eight participants, seven women and one man, took part. Field notes and questionnaire data were analysed using critical thematic analysis. Two main themes were identified during analyses: 1) issues that facilitated digital storytelling's usefulness as a research method for Māori reporting on end of life caregiving; and 2) issues that hindered this process. All subthemes identified: recruitment, the pōwhiri process, (Māori formal welcome of visitors) and technology, related to both main themes and are presented in this way. Digital storytelling is an emerging method useful for exploring Indigenous palliative care issues. In line with a Health Promoting Palliative Care approach that centres research in communities, it helps meet the need for diverse approaches to involve underrepresented groups.

Delivery strategies to optimize resource utilization and performance status for patients with advanced life-limiting illness: results from the "palliative care trial" [ISRCTN 81117481].

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Abernethy, Amy P; Currow, David C; Shelby-James, Tania; Rowett, Debra; May, Frank; Samsa, Gregory P; Hunt, Roger; Williams, Helena; Esterman, Adrian; Phillips, Paddy A

2013-03-01

Evidence-based approaches are needed to improve the delivery of specialized palliative care. The aim of this trial was to improve on current models of service provision. This 2×2×2 factorial cluster randomized controlled trial was conducted at an Australian community-based palliative care service, allowing three simultaneous comparative effectiveness studies. Participating patients were newly referred adults, experiencing pain, and who were expected to live >48 hours. Patients enrolled with their general practitioners (GPs) and were randomized three times: 1) individualized interdisciplinary case conference including their GP vs. control, 2) educational outreach visiting for GPs about pain management vs. control, and 3) structured educational visiting for patients/caregivers about pain management vs. control. The control condition was current palliative care. Outcomes included Australia-modified Karnofsky Performance Status (AKPS) and pain from 60 days after randomization and hospitalizations. There were 461 participants: mean age 71 years, 50% male, 91% with cancer, median survival 179 days, and median baseline AKPS 60. Only 47% of individuals randomized to the case conferencing intervention received it; based on a priori-defined analyses, 32% of participants were included in final analyses. Case conferencing reduced hospitalizations by 26% (least squares means hospitalizations per patient: case conference 1.26 [SE 0.10] vs. control 1.70 [SE 0.13], P=0.0069) and better maintained performance status (AKPS case conferences 57.3 [SE 1.5] vs. control 51.7 [SE 2.3], P=0.0368). Among patients with declining function (AKPS performance status (AKPS case conferences 55.0 [SE 2.1] vs. control 46.5 [SE 2.9], P=0.0143; patient/caregiver education 54.7 [SE 2.8] vs. control 46.8 [SE 2.1], P=0.0206). Pain was unchanged. GP education did not change outcomes. A single case conference added to current specialized community-based palliative care reduced hospitalizations and better

Flemish palliative-care nurses' attitudes to palliative sedation: a quantitative study.

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Gielen, Joris; Van den Branden, Stef; Van Iersel, Trudie; Broeckaert, Bert

2012-09-01

Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses' attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated patient and considered it generally better not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units.

The influence of bereavement on body mass index: results from a national Swedish survey.

Directory of Open Access Journals (Sweden)

Aldair J Oliveira

Full Text Available BACKGROUND: Previous findings suggest that the loss of a family member is associated with health and mortality. The purpose of this study was to investigate the association between bereavement experiences and BMI, and whether there are socio-demographic differences in this association. OBJECTIVE: To investigate the association between bereavement experiences and BMI, and whether there are socio-demographic differences in this association. METHODS: We used cross-sectional data with retrospective questions from the Swedish Level of Living Survey (LNU of 2000, including 5,142 individuals. The bereavement experiences examined in the study include the loss of a sibling, a parent or a spouse, and time since the death of a parent. BMI (kg/m2 was calculated using self-reported measurements of weight and height. The association between bereavement and BMI was evaluated through linear regressions. RESULTS: After controlling for possible confounders, most of the models detected an association between bereavement and BMI. The fully-adjusted model showed that loss of parents was associated with a 0.45 increase in BMI (SE = 0.20. The effect also seemed to be dependent on time since the loss and social class position. CONCLUSIONS: The present study is the first to examine associations between different types of familial losses and BMI. We find an association between the death of a family member and BMI, but it appears to be related to time since the death, type of bereavement experience and social class.

DSM-V diagnostic criteria for bereavement-related disorders in children and adolescents: developmental considerations.

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Kaplow, Julie B; Layne, Christopher M; Pynoos, Robert S; Cohen, Judith A; Lieberman, Alicia

2012-01-01

Two bereavement-related disorders are proposed for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V): Adjustment Disorder Related to Bereavement, to be located in the main body of the text as an official diagnostic entity; and Bereavement-Related Disorder, including a Traumatic Death Specifier, to be located in the Appendix as an invitation for further research. These diagnoses currently do not include developmentally informed criteria, despite the importance of developmental processes in the ways children and adolescents grieve. In this article, we draw upon a selective review of the empirical literature and expert clinical knowledge to recommend developmentally informed modifications and specifiers of the proposed criteria for both bereavement disorders and strategies to improve future research. This article is derived from an invited report submitted to the DSM-V Posttraumatic Stress Disorder, Trauma, and Dissociative Disorders Sub-Work Group, and suggested modifications have received preliminary approval to be incorporated into the DSM-V at the time of this writing. Adoption of these proposals will have far-reaching consequences, given that DSM-V criteria will influence both critical treatment choices for bereaved youth and the next generation of research studies.

Conjugal bereavement and well-being of elderly men and women : A preliminary study

NARCIS (Netherlands)

Nieboer, A.P.; Lindenberg, S.M.; Ormel, J.

1998-01-01

Considerable variation in the effects of the loss of the spouse have been reported, and there is lack of agreement regarding the effects of gender and bereavement on well-being. The objective of this article is to examine time-differences in the consequences of bereavement for men and women.

Quality of life considered as well-being: views from philosophy and palliative care practice.

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Olthuis, Gert; Dekkers, Wim

2005-01-01

The main measure of quality of life is well-being. The aim of this article is to compare insights about well-being from contemporary philosophy with the practice-related opinions of palliative care professionals. In the first part of the paper two philosophical theories on well-being are introduced: Sumner's theory of authentic happiness and Griffin's theory of prudential perfectionism. The second part presents opinions derived from interviews with 19 professional palliative caregivers. Both the well-being of patients and the well-being of the carers themselves are considered in this empirical exploration. In the third part the attention shifts from the description of "well-being" to prescriptions for the promotion of well-being. Our interview data are analysed in light of the theories of Sumner and Griffin for clues to the promotion of "well-being." The analysis (1) underscores the subject-relativity of well-being, (2) points out that values that are considered important in every life still seem to be relevant (at least in palliative care practice), and (3) shows the importance of living a certain sort of life when aiming to enhance dying patients' well-being.

Service failures and challenges in responding to people bereaved through drugs and alcohol: An interprofessional analysis.

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Valentine, Christine; McKell, Jennifer; Ford, Allison

2018-05-01

This article reports findings from the first two stages of a three-stage qualitative study which considered the role of services, including public, private and charitable organisations, in responding to the needs of adults bereaved following the drug and/or alcohol-related death of someone close. The study, the first of its kind to explore the landscape and role of services in substance use deaths, was conducted over two sites: south west England and Scotland. In stage 1 of the research, adopting both convenience and purposive sampling, data were collected via semi-structured interviews on experiences and support needs of bereaved individuals (n = 106). In stage 2, six focus groups were conducted with a purposive sample of practitioners (n = 40), including those working for the police, coroner's service, procurator fiscal depute (Scotland), health service, funeral service, press, clergy, Public Health England, Drugs Policy Unit, bereavement counselling/support and alcohol and drug treatment services, to investigate how services may better respond to this bereavement. Thematic analysis from both data-sets identified two overarching themes. The first, focusing on practitioner responses, captures how these bereaved people may meet with inadequate, unkind, and discriminatory responses from services. Having to navigate unfamiliar, fragmented, and time-consuming procedures compounds the bereaved's distress at an already difficult time, illustrated by a 'mapping' of relevant services. The second relates to challenges and opportunities for those responding. Service failures reflect practitioners' poor understanding of both substance use bereavement and the range of other practitioners and services involved. Those bereaved are a poorly understood, neglected and stigmatised group of service users. There is a need for services to respond without judgement or insensitive language, and provide information about, communicate and work closely with, other services despite

The psychological aftermath of bereavement : Risk factors, mediating processes, and intervention

OpenAIRE

Van der Houwen, H.K.

2009-01-01

In this dissertation some of the major facets associated with the psychological effects of bereavement were the subject of investigation: risk factors, mediating processes and intervention. Previous research on risk factors is limited because of a number of methodological shortcomings: a focus on only one or a few factors (which increases the chances of reporting spurious results) and reliance on use of a single measure of bereavement outcome. We avoided these pitfalls by simultaneously exami...

Bereavement rituals in the Muscogee Creek tribe.

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Walker, Andrea C; Balk, David E

2007-08-01

A qualitative, collective case study explores bereavement rituals in the Muscogee Creek tribe. Data from interviews with 27 participants, all adult members of the tribe, revealed consensus on participation in certain bereavement rituals. Common rituals included: (a) conducting a wake service the night before burial; (b) never leaving the body alone before burial; (c) enclosing personal items and food in the casket; (d) digging graves by hand; (e) each individual throwing a handful of dirt into the grave before covering, called giving a "farewell handshake"; (f) covering the grave completely by hand; (g) building a house over the grave; (h) waiting 4 days before burial; (i) using medicine/purification; and (j) adhering to socialized mourning period. Cultural values of family, community, religion, importance of the number 4, Indian medicine, and the meaning of death contributed to the development of these rituals.

Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research.

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Ghirotto, Luca; Busani, Elena; Salvati, Michela; Di Marco, Valeria; Caldarelli, Valeria; Artioli, Giovanna

2018-05-29

Qualitative research is pivotal in gaining understanding of individuals' experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has interest in qualitative research in this area. Nonetheless, a limited number of such studies have included the first-person perspective of children. The aim of this article is to understand the contribution of previous qualitative research on pediatric palliative care that included the voices of children. A systematic review of qualitative studies and a meta-summary were conducted. MEDLINE, CINAHL, PsycINFO, PsycARTICLES, and ERIC were searched without limitations on publication date or language. Eligible articles were qualitative research articles in which the participants were children ranging in age from 3 to 18 years.ResultWe retrieved 16 qualitative research articles reporting on 12 unique studies, and we selected two mixed-method articles. The meta-summary shows eight themes: the relationship with professional caregivers, pain and its management, "living beyond pain," the relationship between pediatric patients and their families, children's view on their treatment and service provision, meanings children give to their end-of-life situation, consequences of clinical decisions, and the relationships among children in pediatric palliative care and their peers.Significance of resultsThis meta-summary presents the "state of the art" of pediatric palliative care qualitative research on children and highlights additional research areas that warrant qualitative study.

Specialist pediatric palliative care prescribing practices: A large 5-year retrospective audit

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Anuja Damani

2016-01-01

Full Text Available Introduction: There is a gradual increasing trend in childhood cancers in India and pediatric palliative care in India is an emerging specialty. Prescribing pain and symptom control drugs in children with cancer requires knowledge of palliative care formulary, dosing schedules, and prescription guidelines. This study is a retrospective audit of prescribing practices of a specialist palliative care service situated in a tertiary cancer center. Methods: A total of 1135 medication records of children receiving specialist pediatric palliative care services were audited for 5 years (2010-2014 to evaluate prescribing practices in children with advanced cancer. Results: A total of 51 types of drugs were prescribed with an average of 4.2 drugs per prescription. 66.9% of the prescriptions had paracetamol, and 33.9% of the prescriptions had morphine. Most common nonsteroidal anti-inflammatory drugs prescribed was ibuprofen (23.9%, and more than 50% of the prescriptions had aperients. The most commonly prescribed aperient was a combination of liquid paraffin and sodium-picosulfate. Dexamethasone was prescribed in 51.9% of patients and in most cases this was part of oral chemotherapy regimen. Generic names in prescription were used only in 33% of cases, and adverse effects of the drugs were documented in only 9% of cases. In 25% of cases, noncompliance to the WHO prescription guidelines was seen, and patient compliance to prescription was seen in 40% of cases. Conclusions: Audit of the prescribing practices in specialist pediatric palliative care service shows that knowledge of pediatric palliative care formulary, rational drug use, dosing, and prescribing guidelines is essential for symptom control in children with advanced life-limiting illness. Noncompliance to WHO prescribing guidelines in one fourth of cases and using nongeneric names in two-thirds of prescription indicates poor prescribing practices and warrants prescriber education. Prescription

A survey comparing the attitudes toward perinatal bereavement care of nurses from three Asian cities.

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Chan, Moon Fai; Lou, Feng-lan; Arthur, David Gordon

2010-12-01

Caring for parents whose infant has died is extremely demanding, difficult, and stressful. In some situations, nurses may experience personal failure, feel helpless, and need to distance themselves from bereaved parents because they are unable to deal with the enormity of the parental feelings of loss. The aim of the study was to describe and compare attitudes toward perinatal bereavement care across a sample of nurses working in five obstetrics and gynecology settings from three Asian cities, as well as the factors associated with these attitudes. A survey was conducted, and 573 nurses were recruited from 2006 to 2007. The data were collected using the perinatal bereavement attitudes scale, which involves an 11-item self-report questionnaire. Nurses' attitudes were mainly positive, but differed across cities, with the attitude of Jinan nurses being significantly more positive than nurses from the other two cities, and the attitude of Hong Kong nurses being significantly the lowest. Positive attitudes were associated with position, and nurses who were well informed of hospital policy and received training for bereavement care were statistically significantly more likely to have a positive attitude toward perinatal bereavement care. Although nurses' attitudes to prenatal bereavement care differ significantly across the three Asian cities, they are generally similar. The differences observed could be related to the wider social, cultural, and organizational circumstances of nursing practice.

The case for a sociology of dying, death, and bereavement.

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Thompson, Neil; Allan, June; Carverhill, Philip A; Cox, Gerry R; Davies, Betty; Doka, Kenneth; Granek, Leeat; Harris, Darcy; Ho, Andy; Klass, Dennis; Small, Neil; Wittkowski, Joachim

2016-01-01

Dying, death, and bereavement do not occur in a social vacuum. How individuals and groups experience these phenomena will be largely influenced by the social context in which they occur. To develop an adequate understanding of dying, death, and bereavement we therefore need to incorporate a sociological perspective into our analysis. This article examines why a sociological perspective is necessary and explores various ways in which sociology can be of practical value in both intellectual and professional contexts. A case study comparing psychological and sociological perspectives is offered by way of illustration.

Preconception maternal bereavement and infant and childhood mortality: A Danish population-based study

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Class, Quetzal A.; Mortensen, Preben B.; Henriksen, Tine B.; Dalman, Christina; D’Onofrio, Brian M.; Khashan, Ali S.

2015-01-01

Objectives Preconception maternal bereavement may be associated with an increased risk for infant mortality, though these previously reported findings have not been replicated. We sought to examine if the association could be replicated and explore if risk extended into childhood. Methods Using a Danish population-based sample of offspring born 1979–2009 (N=1,865,454), we predicted neonatal (0–28 days), post-neonatal infant (29–364 days), and early childhood (1–5 years) mortality following maternal bereavement in the preconception (6–0 months before pregnancy) and prenatal (between conception and birth) periods. Maternal bereavement was defined as death of a first degree relative of the mother. Analyses were conducted using logistic and log-linear Poisson regression that were adjusted for offspring, mother, and father sociodemographic and health factors. Results We identified 6,541 (0.004%) neonates, 3,538 (0.002%) post-neonates, and 2,132 (0.001%) children between the ages of 1 to 5 years who died. After adjusting for covariates, bereavement during the preconception period was associated with an increased odds of neonatal (adjusted odds ratio [aOR] = 1.87, 95% CI: 1.53–2.30) and post-neonatal infant mortality (aOR=1.52, 95% CI: 1.15–2.02). Associations were timing-specific (6 months prior to pregnancy only) and consistent across sensitivity analyses. Bereavement during the prenatal period was not consistently associated with increased risk of offspring mortality, however this may reflect relatively low statistical power. Conclusions Results support and extend previous findings linking bereavement during the preconception period with increased odds of early offspring mortality. The period immediately prior to pregnancy may be a sensitive period with potential etiological implications and ramifications for offspring mortality. PMID:26374948

Excluding parental grief: A critical discourse analysis of bereavement accommodation in Canadian labour standards.

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Macdonald, Mary Ellen; Kennedy, Kimberly; Moll, Sandra; Pineda, Carolina; Mitchell, Lisa M; Stephenson, Peter H; Cadell, Susan

2015-01-01

Grief following child loss is profoundly destabilizing with serious long-term repercussions for bereaved parents. Employed parents may need time away from work to deal with this loss. The purpose of this study was to reflect upon the ways labour policies and practices respond to parental bereavement. Critical discourse analysis was used to examine labour policies and practices related to employment leave for bereaved parents in Canada. Results were compared to international labour standards. Universally, employment policies provide only for the practical issues of bereavement. Commonly, leave is three days, unpaid, and meant to enable ceremonial obligations. Policies do not acknowledge the long-term suffering caused by grief or the variable intensity of different kinds of loss. Managerial, moral, normative and neoliberal values embedded in these policies efface the intensely personal experience of grief, thereby leaving employees at risk for serious health and workplace safety issues. Bereavement leave currently understands grief as a generic, time-limited state with instrumental tasks and ceremonial obligations. In contrast, research characterizes responses to child loss as intense, highly personal experiences for which healing and recovery can take years. This disconnect is especially problematic when viewed through the lens of employee wellbeing, reintegration and workplace productivity.

Mental and physical health correlates among family caregivers of patients with newly-diagnosed incurable cancer: a hierarchical linear regression analysis.

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Shaffer, Kelly M; Jacobs, Jamie M; Nipp, Ryan D; Carr, Alaina; Jackson, Vicki A; Park, Elyse R; Pirl, William F; El-Jawahri, Areej; Gallagher, Emily R; Greer, Joseph A; Temel, Jennifer S

2017-03-01

Caregiver, relational, and patient factors have been associated with the health of family members and friends providing care to patients with early-stage cancer. Little research has examined whether findings extend to family caregivers of patients with incurable cancer, who experience unique and substantial caregiving burdens. We examined correlates of mental and physical health among caregivers of patients with newly-diagnosed incurable lung or non-colorectal gastrointestinal cancer. At baseline for a trial of early palliative care, caregivers of participating patients (N = 275) reported their mental and physical health (Medical Outcome Survey-Short Form-36); patients reported their quality of life (Functional Assessment of Cancer Therapy-General). Analyses used hierarchical linear regression with two-tailed significance tests. Caregivers' mental health was worse than the U.S. national population (M = 44.31, p caregiver, relational, and patient factors simultaneously revealed that younger (B = 0.31, p = .001), spousal caregivers (B = -8.70, p = .003), who cared for patients reporting low emotional well-being (B = 0.51, p = .01) reported worse mental health; older (B = -0.17, p = .01) caregivers with low educational attainment (B = 4.36, p family caregivers of patients with incurable cancer, caregiver demographics, relational factors, and patient-specific factors were all related to caregiver mental health, while caregiver demographics were primarily associated with caregiver physical health. These findings help identify characteristics of family caregivers at highest risk of poor mental and physical health who may benefit from greater supportive care.

Palliative care and elderly health in Brazil

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Angela Maria Amaral Soares Abou Ali

2011-09-01

Full Text Available In recent years elderly population is increasing substantially, about 650,000 per year, as well as the concept of unifamílies, ie, families consisting of a single person. In this paper, is proposed a reflection about health of elderly in Brazil, and the conditions of a chronic disease and its acute state - terminal. In the actual society, capitalist and capitalized, the individual is valued by his production, losing his value when acquires a disabling illnesses. There is a growing need for work, and each time there is less time and resources to manage the permanence of an elderly patient at home, or pay for a caregiver. This situation leads families to resort to hospitalization, which in turn makes the hospitals overcrowded with patients in this state, affecting both emergency care as the treatment of chronic patients. This fact occurs due to lack of hospital infrastructure, as well by the lack of units of the healthy system capable of providing palliative care. The questioning about the elderly who need palliative care, and reflection about the type of care dispended for this kind of patient, should be the focal point of professional's reflections, capable to lead him to a new way of thinking and, consequently, to inspire him to act in a new way.

Palliative Care Development in Mongolia.

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Davaasuren, Odontuya; Ferris, Frank D

2018-02-01

Since the year 2000, Mongolia has established the foundation measures for a national palliative care program and has made several significant achievements. Systematic reviews and observational studies on palliative care development in Mongolia have taken place over the past 16 years. Mongolia began palliative care development in 2000 with the creation of the Mongolian Palliative Care Society and the Palliative Care Department. Palliative care is included in the Mongolia's Health Law, Health Insurance Law, Social Welfare Law, National Cancer Control Program, and the National Program for Non-Communicable Diseases, and has approved Palliative Care Standards and Pain Management Guidelines. Palliative care education is included in the undergraduate and postgraduate curriculum in all medical universities. Six hospice units in Ulaanbaatar have 50 beds; each of the nine districts and all 21 provinces have up to four to five palliative beds, and there are 36 palliative care units, for a total 190 beds for three million people. In 2014, a pediatric palliative care inpatient unit was established with five beds. Essential drugs for palliative care have been available in Mongolia since 2015. The pharmaceutical company IVCO produces morphine, codeine, pethidine, and oxycodone in Ulaanbaatar. Mongolia has made real progress in integrating palliative care into the health system. Copyright © 2017. Published by Elsevier Inc.

Specialist palliative care nursing and the philosophy of palliative care: a critical discussion.

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Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine

2017-07-02

Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integral component of nursing practice regardless of the specialty or clinical setting. However, there has been a change in the way palliative care is provided. Upstreaming and mainstreaming of palliative care and the dominance of a biomedical model with increasing medicalisation and specialisation are key factors in the evolution of contemporary palliative care and are likely to impact on nursing practice. Using a critical reflection of the authors own experiences and supported by literature and theory from seminal texts and contemporary academic, policy and clinical literature, this discussion paper will explore the influence of philosophy on nursing knowledge and theory in the context of an evolving model of palliative care.

Living Disconnected: Building a Grounded Theory View of Bereavement for Adults with Intellectual Disabilities.

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Clute, Mary Ann

2017-11-01

This grounded theory study gathered descriptions the bereavement experience for adults with intellectual disabilities (IDD) through the eyes and voices of a small sample of grief counselors. The counselors described bereaved adults with IDD as individuals who faced potentially heightened effects of the broken attachment bonds, increased risk of coping obstacles, long histories of unrecognized losses, and disenfranchised grief. The participants described bereaved adults with IDD (who sought treatment) as getting pushed to the sidelines to deal with their losses in isolation and confusion. It became evident that though there are many similarities between how all people cope with loss and how people with IDD cope with loss, differences exist. Subtle variations in the experience of loss and grief appear to be driven by culture and beliefs about disability and protection for those with IDD. The participants in this dissertation study contributed foundation data for a theoretical explanation of grief for adults with IDD grounded in data from bereavement counselors.

A Survey of Hospice and Palliative Care Physicians Regarding Palliative Sedation Practices.

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Lux, Michael R; Protus, Bridget McCrate; Kimbrel, Jason; Grauer, Phyllis

2017-04-01

Patients nearing the end of life may experience symptoms that are refractory to standard therapeutic options. Physicians may consider palliative sedation to relieve intolerable suffering. There is limited clinical literature regarding preferred medications for palliative sedation. To determine the preferred medications physicians use when implementing palliative sedation. An Internet-based, cross-sectional survey of hospice and palliative care physicians in the United States. A link to the survey was e-mailed to 3130 physician members of the American Academy of Hospice and Palliative Medicine, of which 381 physicians completed the survey. Physicians were not required to answer all questions. Nearly all (n = 335, 99%) respondents indicated that palliative sedation may be used (acceptable by 73% [n = 248] for refractory symptoms and acceptable by 26% [n = 87] only for imminently dying patients). Seventy-nine percent (n = 252) believed that opioids should not be used to induce palliative sedation but should be continued to provide pain control. Midazolam was the most commonly selected first-line choice for palliative sedation (n = 155, 42%). The most commonly reported second-line agents for the induction of palliative sedation were lorazepam, midazolam (for those who did not select midazolam as first-line agent), and phenobarbital with a reported preference of 20% (n = 49), 19% (n = 46), and 17% (n = 40), respectively. Of the physicians surveyed, 99% (n = 335) felt that palliative sedation is a reasonable treatment modality. Midazolam was considered a drug of choice for inducing and maintaining sedation, and opioids were continued for pain control.

Suicide bereavement and postvention in major suicidology journals: lessons learned for the future of postvention.

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Andriessen, Karl

2014-01-01

Since the seminal publications of Shneidman (1969) and Cain (1972), suicide bereavement and postvention have attracted increasing research interest. To examine the topics of suicide bereavement and postvention in the core international suicidology journals, since their inception until mid-2013, in order to reveal the number of postvention articles throughout the years, their geographic distribution, and the topics of suicide bereavement and postvention that have been published. The online databases of four journals (Crisis, The Journal of Crisis Intervention and Suicide Prevention; Suicide and Life-Threatening Behavior [SLTB]; Archives of Suicide Research; and Suicidology Online) as well as the tables of content of all issues were searched. The number of articles and the countries of origin were quantified, and articles were categorized according to their content. The search identified 144 postvention articles, published during the past 40 years, almost exclusively in two journals (Crisis and SLTB). The majority of articles were (co-)authored by authors from Anglo-Saxon, Western countries. Articles were categorized in three groups: characteristics of suicide bereavement (n = 73), postvention programs (n = 66), and definition/theory and epidemiology of survivors (n = 5). Articles on suicide bereavement and postvention have been published mostly in two suicidology journals, albeit in modest numbers, and from a limited number of mostly Western countries. Our understanding of suicide bereavement and the provision of survivor support might benefit from the development of consensual definitions and from studies in other parts of the world.

Prenatal exposure to bereavement and type-2 diabetes: a Danish longitudinal population based study.

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Jasveer Virk

Full Text Available BACKGROUND: The etiology of type-2 diabetes is only partly known, and a possible role of prenatal stress in programming offspring for insulin resistance has been suggested by animal models. Previously, we found an association between prenatal stress and type-1 diabetes. Here we examine the association between prenatal exposure to maternal bereavement during preconception and pregnancy and development of type-2 diabetes in the off-spring. METHODS: We utilized data from the Danish Civil Registration System to identify singleton births in Denmark born January 1(st 1979 through December 31(st 2008 (N = 1,878,246, and linked them to their parents, grandparents, and siblings. We categorized children as exposed to bereavement during prenatal life if their mothers lost an elder child, husband or parent during the period from one year before conception to the child's birth. We identified 45,302 children exposed to maternal bereavement; the remaining children were included in the unexposed cohort. The outcome of interest was diagnosis of type-2 diabetes. We estimated incidence rate ratios (IRRs from birth using log-linear poisson regression models and used person-years as the offset variable. All models were adjusted for maternal residence, income, education, marital status, sibling order, calendar year, sex, and parents' history of diabetes at the time of pregnancy. RESULTS: We found children exposed to bereavement during their prenatal life were more likely to have a type-2 diabetes diagnosis later in life (aIRR: 1.31, 1.01-1.69. These findings were most pronounced when bereavement was caused by death of an elder child (aIRR: 1.51, 0.94-2.44. Results also indicated the second trimester of pregnancy to be the most sensitive period of bereavement exposure (aIRR:2.08, 1.15-3.76. CONCLUSIONS: Our data suggests that fetal exposure to maternal bereavement during preconception and the prenatal period may increase the risk for developing type-2 diabetes in

Inter-Professional Palliative Care

DEFF Research Database (Denmark)

Madsen, Kirsten Halskov; Henriksen, Jette; Meldgaard, Anette

2013-01-01

Chapter 11 by Kirsten Halskov Madsen, Anette Meldgaard and Jette Henriksen deals with the development of palliative care programmes aimed at the basic level of palliative care practice. The need to develop educational opportunities at particularly this level – described as ‘the basic inter......-professional level of palliative care’ – has been increasing for many years where palliative care has conventionally and primarily been associated with specialist training. As the authors show – based on a mapping out of existing educational initiatives in a region of Denmark, a reading of the curriculum...... and a description of the organization of palliative care – there is a need for such inter-professional palliative care that raises the level of competences at the basic level and the sharing of knowledge as well as securing the continuous qualifying of healthcare staff working with palliative care....

Flemish Palliative-Care Nurses’ Attitudes to Palliative Sedation: Results of a Quantitative Study

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Gielen, Joris; Van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert

2012-01-01

Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses’ attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n=415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated pa...

Losing a child: finding meaning in bereavement

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Julia Bogensperger

2014-03-01

Full Text Available Background: Confronting the loss of a loved one leads us to the core questions of human existence. Bereaved parents have to deal with the rupture of a widely shared concept of what is perceived to be the natural course of life and are forced into meaning reconstruction. Objective: This study aims to expand upon existing work concerning specific themes of meaning reconstruction in a sample of bereaved parents. More specifically, the relationship between meaning reconstruction, complicated grief, and posttraumatic growth was analyzed, with special attention focused on traumatic and unexpected losses. Method: In a mixed methods approach, themes of meaning reconstruction (sense-making and benefit-finding were assessed in in-depth interviews with a total of 30 bereaved parents. Posttraumatic growth and complicated grief were assessed using standardized questionnaires, and qualitative and quantitative results were then merged using data transformation methods. Results: In total 42 themes of meaning reconstruction were abstracted from oral material. It was shown that sense-making themes ranged from causal explanations to complex philosophical beliefs about life and death. Benefit-finding themes contained thoughts about personal improvement as well as descriptions about social actions. Significant correlations were found between the extent of sense-making and posttraumatic growth scores (rs=0.54, rs=0.49; p<0.01, especially when the death was traumatic or unexpected (rs=0.67, rs=0.63; p<0.01. However, analysis revealed no significant correlation with complicated grief. Overall results corroborate meaning reconstruction themes and the importance of meaning reconstruction for posttraumatic growth.

The nature of conflict in palliative care: A qualitative exploration of the experiences of staff and family members.

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François, Karemah; Lobb, Elizabeth; Barclay, Sarah; Forbat, Liz

2017-08-01

Conflict is a significant and recurring problem in healthcare. This study aimed to understand staff and relatives' perspectives on the characteristics of conflict and serious disagreement in adult palliative care, including triggers, risk factors and the impact on themselves and clinical care. Qualitative study of 25 staff and seven bereaved relatives using individual interviews, recruited from a multidisciplinary specialist palliative care setting in Australia. Data were analysed thematically. Communication was frequently cited as a cause of conflict. Further, different understandings regarding disease process, syringe drivers and providing nutrition/hydration caused conflict. Staff applied empathy to moderate their responses to conflict. Relatives' reactions to conflict followed a trend of anger/frustration followed by explanations or justifications of the conflict. Relatives identified systemic rather than interpersonal issues as triggering conflict. The data illustrate connections with conflict literature in other clinical areas, but also points of convergence such as the compassion shown by both families and staff, and the identification of systemic rather than always individual causes. Family meetings may fruitfully be applied to prevent and de-escalate conflict. Clinical audits may be useful to identify and provide support to families where there may be unresolved conflict impacting grief process. Copyright © 2017 Elsevier B.V. All rights reserved.

Patient-centered family meetings in palliative care: a quality improvement project to explore a new model of family meetings with patients and families at the end of life.

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Sanderson, Christine R; Cahill, Philippa J; Phillips, Jane L; Johnson, Anne; Lobb, Elizabeth A

2017-12-01

Family meetings in palliative care can enhance communication with family members and identify unmet needs. However, the patient's voice may not be heard. This pre and post-test quality improvement project was conducted from 2013-2014 and investigated a patient-centered family meeting, which is a different approach to palliative care family meetings, to determine its feasibility and acceptability for patients, family and the palliative care team. Newly admitted patients to an Australian in-patient specialist palliative care unit were invited to ask anyone they wished to join them in a meeting with the palliative care team and to identify issues they wished to discuss. Consenting inpatients were interviewed shortly after admission; participated in a family meeting and re-interviewed 2-3 days after the meeting. Family members provided feedback at the end of the meeting. A focus group was held with staff for feedback on this new approach for family meetings. Meetings were observed, documented and thematically analyzed. Thirty-one newly admitted patients were approached to participate in a family meeting. Eighty-four percent had family meetings and the majority (96%) was attended by the patient. Thematic analysis revealed 69% of patient-centered meetings raised end-of-life concerns and 54% were "family-focused". Patient-centered family meetings in palliative care were shown to be feasible and acceptable for staff, patients and family members. Many patients and families spontaneously shared end-of-life concerns. A patient-centered approach to family meetings that includes active patient involvement may provide additional and valued opportunities for patients and families to: express mutual concerns, deliver messages of comfort and appreciation, and prepare for death. Further investigation of this approach, including families' bereavement outcomes, is warranted.

Muslim physicians and palliative care: attitudes towards the use of palliative sedation.

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Muishout, George; van Laarhoven, Hanneke W M; Wiegers, Gerard; Popp-Baier, Ulrike

2018-05-08

Muslim norms concerning palliative sedation can differ from secular and non-Muslim perceptions. Muslim physicians working in a Western environment are expected to administer palliative sedation when medically indicated. Therefore, they can experience tension between religious and medical norms. To gain insight into the professional experiences of Muslim physicians with palliative sedation in terms of religious and professional norms. Interpretative phenomenological study using semi-structured interviews to take a closer look at the experiences of Muslim physicians with palliative sedation. Data were recorded, transcribed and analysed by means of interpretative phenomenological analysis (IPA). Ten Muslim physicians, working in the Netherlands, with professional experience of palliative sedation. Two main themes were identified: professional self-concept and attitudes towards death and dying. Participants emphasized their professional responsibility when making treatment decisions, even when these contravened the prevalent views of Islamic scholars. Almost all of them expressed the moral obligation to fight their patients' pain in the final stage of life. Absence of acceleration of death was considered a prerequisite for using palliative sedation by most participants. Although the application of palliative sedation caused friction with their personal religious conceptions on a good death, participants followed a comfort-oriented care approach corresponding to professional medical standards. All of them adopted efficient strategies for handling of palliative sedation morally and professionally. The results of this research can contribute to and provide a basis for the emergence of new, applied Islamic ethics regarding palliative sedation.

Family caregiving in bipolar disorder: caregiver consequences, caregiver coping styles, and caregiver distress.

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Goossens, P.J.J.; Wijngaarden, B. van; Knoppert-van der Klein, E.A.M.; Achterberg, T. van

2008-01-01

AIMS: This study investigated the consequences caregivers of outpatients with bipolar disorder are confronted with, the distress they experience and their coping styles. METHODS: Caregivers (n = 115) were asked to complete the Involvement Evaluation Questionnaire (IEQ) to measure caregivers'

Maternal Antenatal Bereavement and Neural Tube Defect in Live-Born Offspring: A Cohort Study.

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Katja Glejsted Ingstrup

Full Text Available Maternal emotional stress during pregnancy has previously been associated with congenital neural malformations, but most studies are based on data collected retrospectively. The objective of our study was to investigate associations between antenatal maternal bereavement due to death of a close relative and neural tube defects (NTDs in the offspring.We performed a register-based cohort study including all live-born children (N = 1,734,190 from 1978-2008. Exposure was bereavement due to loss of a close relative from one year before conception to the end of the first trimester of pregnancy. The outcome was NTDs in the offspring according to the International Classification of Disease. We used multivariate logistic regression to estimate prevalence odds ratios (ORs.A total of 2% children were born to mothers who lost a close relative prenatally. During 30 years of follow-up, 1,115 children were diagnosed with any NTDs: spina bifida (n = 889, anencephaly (n = 85 and encephalocele (n = 164. And 23 children were diagnosed with two types of NTDs. Overall, when comparing bereaved mothers to non-bereaved mothers, no significant increased prevalence of NTDs in the offspring was seen (OR = 0.84; 95% confidence interval: 0.52-1.33.Overall maternal bereavement in the antenatal period was not related to NTDs in liveborn offspring.

Validity and reliability of the Japanese version of the Caregiver Reaction Assessment Scale (CRA-J) for community-dwelling cancer patients.

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Misawa, Tomoyo; Miyashita, Mitsunori; Kawa, Masako; Abe, Koji; Abe, Mayumi; Nakayama, Yasuko; Given, Charles W

2009-01-01

The aim of this study was to validate the Caregiver Reaction Assessment (CRA) among caregivers of community-dwelling advanced cancer patients in Japan. A cross-sectional questionnaire was administered to advanced cancer patients and their caregivers who were cared for at day hospices and home palliative care services. We translated the CRA into Japanese, and then verified factor validity, reliability, construct validity, concurrent validity, and known groups' validity. To address construct and concurrent validity, we calculated Pearson's correlation coefficient between the Japanese version of the CRA and the Burden Index of Caregivers (BIC). To address known groups' validity, we used the t test or analysis of variance (ANOVA). A total of 57 caregivers participated in the study. Five factors were extracted (''impact on schedule,'' ''caregiver's self-esteem,'' ''lack of family support,'' ''impact on health,'' and ''impact on finances'') and reliability was good. Construct and concurrent validity among the subscales of the BIC were good. Regarding known groups validity, the subscale score of ''impact on schedule'' for the groups that cared 6 hours or more per day was higher than the other group (P = .04). The CRA-J is valid and reliable. This scale is useful for caregivers of cancer patients in Japan.

Case-Mix Adjustment of the Bereaved Family Survey.

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Kutney-Lee, Ann; Carpenter, Joan; Smith, Dawn; Thorpe, Joshua; Tudose, Alina; Ersek, Mary

2018-01-01

Surveys of bereaved family members are increasingly being used to evaluate end-of-life (EOL) care and to measure organizational performance in EOL care quality. The Bereaved Family Survey (BFS) is used to monitor EOL care quality and benchmark performance in the Veterans Affairs (VA) health-care system. The objective of this study was to develop a case-mix adjustment model for the BFS and to examine changes in facility-level scores following adjustment, in order to provide fair comparisons across facilities. We conducted a cross-sectional secondary analysis of medical record and survey data from veterans and their family members across 146 VA medical centers. Following adjustment using model-based propensity weighting, the mean change in the BFS-Performance Measure score across facilities was -0.6 with a range of -2.6 to 0.6. Fifty-five (38%) facilities changed within ±0.5 percentage points of their unadjusted score. On average, facilities that benefited most from adjustment cared for patients with greater comorbidity burden and were located in urban areas in the Northwest and Midwestern regions of the country. Case-mix adjustment results in minor changes to facility-level BFS scores but allows for fairer comparisons of EOL care quality. Case-mix adjustment of the BFS positions this National Quality Forum-endorsed measure for use in public reporting and internal quality dashboards for VA leadership and may inform the development and refinement of case-mix adjustment models for other surveys of bereaved family members.

Enhanced Psychosocial Support for Caregiver Burden for Patients With Chronic Kidney Failure Choosing Not to Be Treated by Dialysis or Transplantation: A Pilot Randomized Controlled Trial.

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Chan, Kwok Ying; Yip, Terence; Yap, Desmond Y H; Sham, Mau Kwong; Wong, Yim Chi; Lau, Vikki Wai Kee; Li, Cho Wing; Cheng, Benjamin Hon Wai; Lo, Wai Kei; Chan, Tak Mao

2016-04-01

Family caregivers of patients with chronic kidney failure have increased burden, as reflected by their high frequency of physical and mental disturbances. The impact of enhanced psychosocial support to caregivers of patients with chronic kidney failure remains unclear. Open-label randomized controlled trial. All new patients referred to the renal palliative clinic were screened. Caregivers of patients who met the following criteria were recruited: (1) chronic kidney failure as defined by creatinine clearance renal care (control). Enhanced psychosocial support included counseling and psychosocial interventions by an on-site palliative care nurse and designated social worker. Each caregiver was followed up at 2- to 4-week intervals for up to 6 months. Zarit Burden Inventory (ZBI) and Hospital Anxiety and Depression Scale (HADS) in caregivers and McGill Quality of Life scores in patients of both groups were compared. 29 pairs of family caregivers/patients with chronic kidney failure were randomly assigned (intervention, n=14; control, n=15). Mean ages of patients and caregivers were 81.6 ± 5.1 and 59.8 ± 14.2 (SD) years, respectively. The intervention group showed significantly lower ZBI scores than the control group at 1 and 3 months (22.0 ± 5.3 vs 31.6 ± 9.5 and 21.3 ± 6.6 vs 33.4 ± 7.2; P=0.006 and P=0.009, respectively). HADS anxiety scores of caregivers who received the intervention were significantly lower than those of controls at 1 and 3 months (7.1 ± 3.2 vs 10.1 ± 2.2 and 6.5 ± 4.5 vs 11.0 ± 3.1; P=0.01 and P=0.03, respectively). Insignificant reductions in ZBI and HADS scores were found at 6 months. 19 patients died (intervention, n=10; control, n=9) during the study period. The study is limited by a relatively small sample size and short duration. Enhanced psychosocial support program in patients with chronic kidney failure and caregivers resulted in an early significant reduction in caregiver burden and anxiety. Copyright © 2016 National Kidney

Palliative sedation for intolerable suffering.

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Maltoni, Marco; Scarpi, Emanuela; Nanni, Oriana

2014-07-01

The purpose of this review is to provide an update on palliative sedation in palliative and end-of-life care. Palliative sedation is the medical procedure used to deal with refractory symptoms in advanced cancer patients when all other specific approaches have failed. Palliative sedation, in the strictest sense of the term, is a proportionate (proportionate palliative sedation, PPS) and intrinsically variable procedure used on an individual basis to relieve refractory symptoms in terminally ill patients, without the intention of hastening death. Completely separate from any other end-of-life decision and not intended to hasten death, palliative sedation has been shown not to have a detrimental impact on survival. To maintain palliative sedation as a legitimate clinical procedure from any ethical or clinical point of view, it must be limited to the restricted area for which it was conceived, that is, relief from refractory suffering as deemed necessary by a patient and by an experienced palliative care team. In this way, there is no risk of associating palliative sedation with other end-of-life decisions. Close collaboration is needed between oncologists and palliative care physicians for this clinical procedure.

Literary representations of death, dying and bereavement in children´s literature

OpenAIRE

Schroth, Klara Charlotte

2017-01-01

Death, dying and bereavement are universal human concerns and yet never fully compre-hensible or knowable. In order to find an approach to the topic, this paper examines and analyses literary representations of death, dying and bereavement in Anglophone literature for children. Scholars such as Kathryn James or Roberta Seelinger Trites have argued for a shift from objective and realistic representations in pre-1980 children’s novels towards an increasing use of narrative devices and fantastic...

Suicidal Ideation and Distress in Family Members Bereaved by Suicide in Portugal

OpenAIRE

Santos, Sara; Campos, Rui; Tavares, Sofia

2015-01-01

The present study assessed the impact of suicide and distress on suicidal ideation in a sample of 93 Portuguese family members bereaved by suicide. A control community sample of 102 adults also participated. After controlling for educational level, those bereaved by the suicide of a family member were found to have higher levels of suicidal ideation. Forty-two percent of family members had Suicide Ideation Questionnaire scores at or above the cutoff point. General distress, dep...

CONCEPTUAL AND DESIGN ISSUES IN INSTRUMENT DEVELOPMENT FOR RESEARCH WITH BEREAVED PARENTS*

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Briller, Sherylyn H.; Schim, Stephanie Myers; Thurston, Celia S.; Meert, Kathleen L.

2013-01-01

Many childhood deaths in the United States occur in pediatric intensive care units (PICUs) and parents have special needs in this death context. As an interdisciplinary research team, we discuss conceptual and design issues encountered in creating a new instrument, the Bereaved Parent Needs Assessment–PICU, for assessing parents’ needs in this setting. Using a qualitative approach, our team previously explored how the culture and related ways of providing care in one urban Midwestern children’s hospital PICU affected parents’ bereavement needs and experiences. We describe using this qualitative foundation in the development of a new quantitative instrument to more widely validate and measure bereaved parents’ needs around the time of a child’s death across multiple PICUs. We highlight a series of issues that warrant consideration in designing a research instrument for this vulnerable population including setting and context, format and content, temporality, recruitment, and content expertise. PMID:22953511

The impact of the carer support needs assessment tool (CSNAT in community palliative care using a stepped wedge cluster trial.

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Samar M Aoun

Full Text Available Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT, as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart to identify, review and address caregivers' needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC, caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group. At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41. Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family

Development of an instrument to measure self-efficacy in caregivers of people with advanced cancer.

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Ugalde, Anna; Krishnasamy, Meinir; Schofield, Penelope

2013-06-01

Informal caregivers of people with advanced cancer experience many negative impacts as a result of their role. There is a lack of suitable measures specifically designed to assess their experience. This study aimed to develop a new measure to assess self-efficacy in caregivers of people with advanced cancer. The development and testing of the new measure consisted of four separate, sequential phases: generation of issues, development of issues into items, pilot testing and field testing. In the generation of issues, 17 caregivers were interviewed to generate data. These data were analysed to generate codes, which were then systematically developed into items to construct the instrument. The instrument was pilot tested with 14 health professionals and five caregivers. It was then administered to a large sample for field testing to establish the psychometric properties, with established measures including the Brief Cope and the Family Appraisals for Caregiving Questionnaire for Palliative Care. Ninety-four caregivers completed the questionnaire booklet to establish the factor structure, reliability and validity. The factor analysis resulted in a 21-item, four-factor instrument, with the subscales being termed Resilience, Self-Maintenance, Emotional Connectivity and Instrumental Caregiving. The test-retest reliability and internal consistency were both excellent, ranging from 0.73 to 0.85 and 0.81 to 0.94, respectively. Six convergent and divergent hypotheses were made, and five were supported. This study has developed a new instrument to assess self-efficacy in caregivers of people with advanced cancer. The result is a four-factor, 21-item instrument with demonstrated reliability and validity. Copyright © 2012 John Wiley & Sons, Ltd.

Palliative or Comfort Care

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... is not under control Need help understanding your situation and coordinating care PALLIATIVE CARE Often a team of specialists provides palliative care. The team usually includes: Palliative care doctors and nurses Social workers and chaplains Pharmacists and nutritionists Counselors and others ...

Implications of Parental Suicide and Violent Death for Promotion of Resilience of Parentally-Bereaved Children

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Brown, Ana C.; Sandler, Irwin N.; Tein, Jenn-Yun; Liu, Xianchen; Haine, Rachel A.

2007-01-01

This article considers the implications of suicide and violent deaths (including suicide, homicide, and accidents) for the development of interventions for parentally bereaved children. Analyses of data from the Family Bereavement Program find minimal differences in children's mental health problems, grief or risk and protective factors based on…

How Adults With an Intellectual Disability Experience Bereavement and Grief: A Qualitative Exploration

OpenAIRE

McRitchie, Robyn; McKenzie, Karen; Quayle, Ethel; Harlin, Margaret; Neumann, Katja

2014-01-01

This qualitative study explored the lived experiences of bereavement of 13 adults with an intellectual disability and found that their experiences could be situated within the concept of disenfranchised grief. The latter mediated participants' meaning making of the grieving process illustrated in the themes of intra- and interpersonal bereavement experiences, core beliefs about life and death, level of inclusion, and maintaining a continuing relationship with the deceased. The results suggest...

The Effects of the Family Bereavement Program to Reduce Suicide Ideation and/or Attempts of Parentally Bereaved Children Six and Fifteen Years Later.

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Sandler, Irwin; Tein, Jenn-Yun; Wolchik, Sharlene; Ayers, Tim S

2016-04-01

Findings concerning the long-term effects of the Family Bereavement Program (FBP) to reduce suicide ideation and/or attempts of parentally bereaved children and adolescents are presented. Parental death is a significant risk factor for suicide among offspring (Guldin et al., 2015). This study is a long-term follow-up of 244 children and adolescents who had participated in a randomized trial of the FBP, examining the intervention effects on suicide ideation and/or attempts as assessed through multiple sources. Results indicate a significant effect of the FBP to reduce suicide ideation and/or attempts at the 6- and 15-year follow-up evaluation. The findings support the potential benefits of further research on "upstream" suicide prevention. © 2016 The American Association of Suicidology.

Palliative Care

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... for Patients and Families What Is Palliative Care? Definition Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to ...

Communication skills in Obstetrics: what can we learn from bereaved parents?

LENUS (Irish Health Repository)

Nuzum, D

2017-02-01

Communicating bad news in obstetrics is challenging. This study explores the impact of how bad news was communicated to parents following a diagnosis of stillbirth. Qualitative in-depth interviews were conducted with 12 mothers and 5 fathers, bereaved following stillbirth at a tertiary maternity hospital where the perinatal mortality rate is 5.2\\/1000. Data were analysed using Interpretative Phenomenological Analysis. How the diagnosis of stillbirth was communicated had a profound and lasting impact on parents. Dominant superordinate themes were Language used, Sensitivity and Diversionary techniques. Parents recalled in detail where and how bad news was broken and language used. Diversionary techniques created a sense of mistrust especially when parents felt information was being withheld. Bereaved parents valued privacy at the time of diagnosis of stillbirth.This study highlights the importance of language, sensitivity and environment where clinicians can learn from the experiences of bereaved parents who value open, sensitive and honest communication. The results of this study highlight the importance of patient-focused communication training for clinicians.

From Body to Mind and Spirit: Qigong Exercise for Bereaved Persons with Chronic Fatigue Syndrome-Like Illness

Directory of Open Access Journals (Sweden)

Jie Li

2015-01-01

Full Text Available Bereavement may bring negative impacts on the mind, body, and spiritual well-being of grieving persons. Some bereaved persons with chronic fatigue syndrome- (CFS- illness experience a dual burden of distress. This study investigated the effects of bereavement on CFS-like illness by comparing bereaved and nonbereaved participants. It also adopted a random group design to investigate the effectiveness of Qigong on improving the well-being of bereaved participants. The Qigong intervention comprised 10 group sessions delivered twice a week for 5 weeks and home-practice for at least three times a week lasting 15–30 minutes each. The participants’ fatigue, anxiety, and depression, quality of life (QoL, and spiritual well-being were measured at baseline and 3 months after treatment. The bereaved participants experienced significantly greater mental fatigue (16.09 versus 14.44, p=0.017 and lower physical QoL (34.02 versus 37.17, p=0.011 than their nonbereaved counterparts. After 3 months, the mental fatigue (−8 versus −4, p=0.010 and physical fatigue (−10 versus −5, p=0.007 experienced by intervention group had declined significantly, and improvements on their spirituality (14 versus −2, p=0.013 and psychological QoL (8.91 versus 0.69, p=0.002 scores exceeded those of the control group.

A pilot study of the experience of family caregivers of patients with advanced pancreatic cancer using a mixed methods approach.

Science.gov (United States)

Sherman, Deborah W; McGuire, Deborah B; Free, David; Cheon, Joo Young

2014-09-01

significance of the future study and the need to develop interventions to support family caregivers in their roles. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

The Attitudes of Indian Palliative-care Nurses and Physicians to Pain Control and Palliative Sedation.

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Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert

2011-01-01

We wanted to assess Indian palliative-care nurses and physicians' attitudes toward pain control and palliative sedation. From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms.

Family functioning and its predictors among disaster bereaved individuals in China: eighteen months after the Wenchuan Earthquake.

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Xiaoyi Cao

Full Text Available BACKGROUND: The 2008 Wenchuan earthquake in China resulted in great loss of life and property, and previous studies have focused on psychopathological symptoms in survivors after disasters. This study examined perceived family functioning and its predictors in disaster bereaved individuals eighteen months after the 2008 Wenchuan earthquake. METHODOLOGY/FINDINGS: This was a cross-sectional study of a convenience sample of 264 bereaved individuals. The instruments used in the study included Family APGAR Index, Family Adaptability and Cohesion Evaluation ScaleãÀ, Emotional and Social Loneliness Scale, and a range of items eliciting demographic characteristics and disaster-related variables. The results indicated that the rates of moderate family dysfunction and severe family dysfunction in bereaved individuals were 37.1% and 12.9%, respectively. Less financial loss during the earthquake was a significant predictor for positive family function. Better self-rated health status after the earthquake was significantly related to positive family function, cohesion, and adaptability. Scores on family cohesion and adaptability in bereaved individuals from extended or nuclear families were significantly higher than those from single-parent families. The ability to give birth to another baby of bereaved parents was a significant predictor for positive family function and cohesion. Poorer family function, cohesion and adaptability were significantly related to greater loneliness. CONCLUSIONS/SIGNIFICANCE: This study found a high prevalence of family dysfunction in bereaved individuals eighteen months after the 2008 Wenchuan earthquake. Strategies can be designed to facilitate post-disaster recovery, particularly for the bereaved at high risk for family dysfunction. The study provides useful information for post-disaster rebuilding and relief work.

[General practitioner and palliative sedation].

Science.gov (United States)

Schweitzer, Bart

2014-01-01

Recent publications in Dutch national newspapers on palliative sedation have raised concerns about its use in general practice. There is now evidence that there is no significant increase in the incidence of palliative sedation. Euthanasia requests were pending in 20.8% of the cases in which palliative sedation was performed, but the general practitioners could clearly justify why they made this choice. This is important because it indicates that they are aware of a sharp distinction between euthanasia and palliative sedation. Although the decision to perform palliative sedation was discussed with almost all cancer patients, patient involvement was less present in non-cancer conditions. This may be related to different disease trajectories, but it also indicates that attention should be devoted to earlier identification of patients in need of palliative care. The findings confirm that the practice of palliative sedation by general practitioners largely reflects the recommendations of the Dutch National Guideline on Palliative Sedation.

Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians

NARCIS (Netherlands)

Koper, I.; Heide, A.; Janssens, M.J.P.A.; Swart, S.; Perez, R.S.G.M.; Rietjens, J.A.C.

2014-01-01

Purpose: Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it

Palliative care at the end-of-life in glioma patients.

Science.gov (United States)

Koekkoek, Johan A F; Chang, Susan; Taphoorn, Martin J B

2016-01-01

The end-of-life (EOL) phase of patients with a glioma starts when symptom prevalence increases and antitumor treatment is no longer effective. During the EOL phase, care is primarily aimed at reducing symptom burden while maintaining quality of life as long as possible without inappropriate prolongation of life. Palliative care during the EOL phase also involves complex medical decisions for the prevention and relief of suffering. We discuss the prevalence and treatment of the most common EOL symptoms, decision making in the EOL phase, the organization of EOL care, and the role of the patient's caregiver. Treating disease-specific symptoms, such as impaired consciousness, seizures, focal neurologic deficits and cognitive disturbances, is a major concern during the EOL phase, as these symptoms may interfere with EOL decision making. Advance care planning is aimed at reaching consensus about possible EOL decisions between all participants, respecting the values of patients and their informal caregivers. In order to prevent the possibility that the patient becomes incompetent to make informed decisions, we recommend initiating EOL conversations at a relatively early stage in the disease course. © 2016 Elsevier B.V. All rights reserved.

YouTube as a Tool for Pain Management With Informal Caregivers of Cancer Patients: A Systematic Review

Science.gov (United States)

Wittenberg-Lyles, Elaine; Oliver, Debra Parker; Demiris, George; Swarz, Jeff; Rendo, Matthew

2014-01-01

Context Cancer caregivers have information and support needs, especially about cancer pain management. With high Internet use reported among caregivers, YouTube may be an accessible option when looking for information on cancer pain management. Objectives The purpose of this study was to explore the availability and characteristics of instructional cancer pain management videos on YouTube and determine to what extent these videos addressed the role of informal caregivers in cancer pain management. Methods A systematic review of videos on YouTube resulting from search terms “pain and cancer,” “pain and hospice,” and “pain and palliative care” was conducted in May 2013. If the video addressed pain management, was in English, and was instructional, it was coded for the scope and design of instructional content that included caregivers. Results The search terms yielded 1118 unique videos and 43 videos met the inclusion criteria. Overall, 63% of videos were viewed 500 times or less and half of the videos received “like” ratings by viewers. Video instruction was primarily talk without any onscreen action (65%), user-generated amateur video (79%), and had poor quality sources of information. Videos were mainly clinician-centered (77%). Although the majority of videos addressed the need for caregiver pain assessment (35%) and caregiver education (23%), few actually addressed specific caregiver pain management barriers. Conclusion The majority of videos were primarily directed toward a clinical audience. Future research is necessary to determine if the platform is feasible and beneficial as a support tool for oncology caregivers. PMID:24793505

Effects of Mental Health Support on the Grief of Bereaved People Caused by Sewol Ferry Accident

NARCIS (Netherlands)

Han, Hyesung; Noh, Jin-Won; Huh, Hyu Jung; Huh, Seung; Joo, Ji-Young; Hong, Jin Hyuk; Chae, Jeong-Ho

Few studies have assessed the overall effects of multi-centered, complicated mental health support on the grief process. This study investigated the broader influence of mental health support provided practically to the bereaved family on the severity of complicated grief. Ninety-three bereaved

Complicated grief and bereavement in young adults following close friend and sibling loss.

Science.gov (United States)

Herberman Mash, Holly B; Fullerton, Carol S; Ursano, Robert J

2013-12-01

This study examined the association between types of loss (i.e., sibling or close friend) and relationship quality (i.e., depth and conflict) with complicated grief, depression, somatic symptoms, and world assumptions in bereaved young adults. Participants were 107 young adults aged 17-29 years who were either bereaved or had never experienced a loss. Among bereaved participants, 66 lost a close friend and seven lost a sibling within the past 3 years (M = 1.63 years). Nineteen percent of the young adults met criteria for complicated grief and 31% had mild to severe depression. Participants with a deceased sibling reported greater depth in the relationship as compared to those who lost a friend. They were also more likely to have complicated grief (57% versus 15%) and report significantly higher levels of grief, depression, and somatic symptoms. Those who lost a sibling reported a lower sense of meaningfulness and benevolence of the world and self-worth as compared with those who lost a close friend or had not experienced a loss. Complicated grief and depression are common among bereaved young adults. Sibling loss is particularly distressing to young adults, due in part to the high level of relationship depth, and is associated with increased psychological and physical symptoms postloss. © 2013 Wiley Periodicals, Inc.

Psychopathology Among Homicidally Bereaved Individuals : A Systematic Review

NARCIS (Netherlands)

van Denderen, Mariëtte; de Keijser, Jos; Kleen, Marco; Boelen, Paul A.

2015-01-01

In the literature on bereavement, claims are made that homicidal loss is associated with posttraumatic stress reactions, depression, and other severe mental health problems. It is surprising that only a few studies have investigated the nature and prevalence of emotional symptoms following homicidal

Guilt in Bereavement : A Review and Conceptual Framework

NARCIS (Netherlands)

Li, Jie; Stroebe, Margaret; Chan, Cecilia L. W.; Chow, Amy Y. M.

2014-01-01

Thirty-four quantitative and 9 qualitative studies are reviewed to indicate current understanding of the nature and impact of guilt in bereavement. This overview suggests that guilt is especially prevalent among some vulnerable subgroups, and it is associated with maladaptive health outcomes. Being

A Review of Apps for Calming, Relaxation, and Mindfulness Interventions for Pediatric Palliative Care Patients

Directory of Open Access Journals (Sweden)

Taelyr Weekly

2018-01-01

Full Text Available Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on app quality assessment or review of these apps for level of engagement, functionality, aesthetics, or applicability for palliative pediatric patients. The pediatric palliative care study team searched smartphone application platforms for apps relevant to calming, relaxation, and mindfulness for pediatric and adolescent patients. Apps were reviewed using a systematic data extraction tool. Validated Mobile Application Rating Scale (MARS scores were determined by two blinded reviewers. Apps were then characterized by infant, child, adolescent, and adult caregiver group categories. Reviewer discussion resulted in consensus. Sixteen of the 22 apps identified were included in the final analysis. The apps operated on either iOS or Android platforms. All were available in English with four available in Spanish. Apps featured a relaxation approach (12/16, soothing images (8/16, and breathing techniques (8/16. Mood and sleep patterns were the main symptoms targeted by apps. Provision of mobile apps resource summary has the potential to foster pediatric palliative care providers’ knowledge of app functionality and applicability as part of ongoing patient care.

Pediatric Palliative Care at a Glance

Science.gov (United States)

® ™ ® Pediatric Palliative Care at a Glance A child’s serious illness affects the entire family. Pediatric palliative (pal-lee-uh-tiv) care can support ... extra support, palliative care can help. What is pediatric palliative care? Pediatric palliative care is supportive care ...

The Attitudes of Indian Palliative-care Nurses and Physicians to Pain Control and Palliative Sedation

Science.gov (United States)

Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert

2011-01-01

Aim: We wanted to assess Indian palliative-care nurses and physicians’ attitudes toward pain control and palliative sedation. Materials and Methods: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). Results: The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Conclusion: Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms. PMID:21633619

Bereaved relatives' experiences during the incurable phase of cancer: a qualitative interview study.

Science.gov (United States)

Wijnhoven, Marleen N; Terpstra, Wim E; van Rossem, Ronald; Haazer, Carolien; Gunnink-Boonstra, Nicolette; Sonke, Gabe S; Buiting, Hilde M

2015-11-25

To examine bereaved relatives' experiences from time of diagnosis of incurable cancer until death with specific emphasis on their role in the (end-of-life) decision-making concerning chemotherapy. Qualitative interview study. Hospital-based. In-depth interviews with 15 close relatives of patients who died from non-small cell lung cancer or pancreatic cancer, using a thematic content analysis. All relatives reported that patients' main reason to request chemotherapy was the possibility to prolong life. Relatives reported that patients receiving chemotherapy had more difficulty to accept the incurable nature of their disease than patients who did not. They mostly followed the patients' treatment wish and only infrequently suggested ceasing chemotherapy (because of side effects) despite sometimes believing that this would be a better option. Relatives continuously tried to support the patient in either approaching the death or in attaining hope to continue life satisfactorily. Most relatives considered the chemotherapy period meaningful, since it sparked patients' hope and was what patients wanted. Cessation of chemotherapy caused a relief but coincided with physical deterioration and an increased caregivers' role; many relatives recalled this latter period as more burdensome. Relatives tend to follow patients' wish to continue or cease chemotherapy, without expressing their own feelings, although they were more inclined to opt cessation. They experience a greater caregiver role after cessation and their feelings of responsibility associated with the disease can be exhausting. More attention is needed to reduce relatives' distress at the end of life, also to fully profit from this crucial form of (informal) healthcare. 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/

Posttraumatic Symptoms in Japanese Bereaved Family Members with Special Regard to Suicide and Homicide Cases

Science.gov (United States)

Ogata, Kohske; Ishikawa, Takaki; Michiue, Tomomi; Nishi, Yuko; Maeda, Hitoshi

2011-01-01

The authors investigated posttraumatic stress disorder (PTSD) symptoms in Japanese bereaved family members using a questionnaire. Participants were bereaved as a result of suicide and homicide (n = 51 and 49, respectively), with natural death (n = 56) as a control; and their relationships to the deceased were parent-child (n = 79), conjugal (n =…

The therapeutic effectiveness of using visual art modalities with the bereaved: a systematic review

Science.gov (United States)

Gramling, Sandra E

2018-01-01

Bereaved individuals are increasingly considered at risk for negative psychological and physiological outcomes. Visual art modalities are often incorporated into grief therapy interventions, and clinical application of art therapy techniques with the bereaved has been widely documented. Although clinicians and recipients of these interventions advocate for their helpfulness in adapting to bereavement, research investigating the efficacy of visual art modalities has produced equivocal results and has not yet been synthesized to establish empirical support across settings. Accordingly, this review critically evaluates the existent literature on the effectiveness of visual art modalities with the bereaved and offers suggestions for future avenues of research. A total of 27 studies were included in the current review. Meta-analysis was not possible because of clinical heterogeneity and insufficient comparable data on outcome measures across studies. A narrative synthesis reports that therapeutic application of visual art modalities was associated with positive changes such as continuing bonds with the deceased and meaning making. Modest and conflicting preliminary evidence was found to support treatment effectiveness in alleviating negative grief symptoms such as general distress, functional impairment, and symptoms of depression and anxiety. PMID:29440940

The therapeutic effectiveness of using visual art modalities with the bereaved: a systematic review.

Science.gov (United States)

Weiskittle, Rachel E; Gramling, Sandra E

2018-01-01

Bereaved individuals are increasingly considered at risk for negative psychological and physiological outcomes. Visual art modalities are often incorporated into grief therapy interventions, and clinical application of art therapy techniques with the bereaved has been widely documented. Although clinicians and recipients of these interventions advocate for their helpfulness in adapting to bereavement, research investigating the efficacy of visual art modalities has produced equivocal results and has not yet been synthesized to establish empirical support across settings. Accordingly, this review critically evaluates the existent literature on the effectiveness of visual art modalities with the bereaved and offers suggestions for future avenues of research. A total of 27 studies were included in the current review. Meta-analysis was not possible because of clinical heterogeneity and insufficient comparable data on outcome measures across studies. A narrative synthesis reports that therapeutic application of visual art modalities was associated with positive changes such as continuing bonds with the deceased and meaning making. Modest and conflicting preliminary evidence was found to support treatment effectiveness in alleviating negative grief symptoms such as general distress, functional impairment, and symptoms of depression and anxiety.

Bereavement process of people with intellectual disability

Directory of Open Access Journals (Sweden)

Virginia MUÑIZ FERNÁNDEZ

2018-03-01

Full Text Available The main goal of this work is focused on detecting the support needs of people with intellectual disabilities during the bereavement process in order to guide about professional interventions and practices aimed to provide more adequate individualized support to their real needs. The sample consists of 93 adults with ID, with ages ranging from 21 to 72 years old (M = 49.9; SD = 11.79, who have suffered the loss of a significant person. The professionals who worked with them and knew them well completed two questionnaires: Staff Attitude Questionnaire (SAQ and Bereavement Needs Assessment (BNAT. Beside descriptive analyses, results were analyzed according to several variables (i.e., gender, age, level of intellectual disability, and level of dependency. Level of intellectual disability and level of dependency were the ones that resulted significant. In order to provide the best answer to their needs, good practices are suggested such as facilitating the understanding of loss, helping them express feelings and emotions, dealing with each case individually, and encouraging to continue education about death.

The Bereavement Guilt Scale : Development and preliminary validation

NARCIS (Netherlands)

Li, Jie; Stroebe, Margaret; Chan, Cecilia L.W.; Chow, Amy Y.M.

The rationale, development, and validation of the Bereavement Guilt Scale (BGS) are described in this article. The BGS was based on a theoretically developed, multidimensional conceptualization of guilt. Part 1 describes the generation of the item pool, derived from in-depth interviews, and review

Palliative Care Leadership Centers Are Key To The Diffusion Of Palliative Care Innovation.

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Cassel, J Brian; Bowman, Brynn; Rogers, Maggie; Spragens, Lynn H; Meier, Diane E

2018-02-01

Between 2000 and 2015 the proportion of US hospitals with more than fifty beds that had palliative care programs tripled, from 25 percent to 75 percent. The rapid adoption of this high-value program, which is voluntary and runs counter to the dominant culture in US hospitals, was catalyzed by tens of millions of dollars in philanthropic support for innovation, dissemination, and professionalization in the palliative care field. We describe the dissemination strategies of the Center to Advance Palliative Care in the context of the principles of social entrepreneurship, and we provide an in-depth look at its hallmark training initiative, Palliative Care Leadership Centers. Over 1,240 hospital palliative care teams have trained at the Leadership Centers to date, with 80 percent of them instituting palliative care services within two years. We conclude with lessons learned about the role of purposeful technical assistance in promoting the rapid diffusion of high-value health care innovation.

The forgotten children of Africa: Voicing HIV and Aids orphans’ stories of bereavement: a narrative approach

Directory of Open Access Journals (Sweden)

Amanda Richter

2005-10-01

Full Text Available This article looks at the bereavement of children left orphaned by the HIV and Aids pandemic that is crippling the continent of Africa. Their bereavement is examined by means of the narrative approach and by integrating this approach with the traditional African art of storytelling. By listening to the stories of three Zulu children, the article gives them the opportunity to express their own unique stories of bereavement: stories that would otherwise have been silenced by the wave of bereavement in the wake of countless deaths worldwide as a result of HIV and Aids infection. It looks at the losses these children have suffered, their greatest fears and how their Zulu culture and customs influence their emotional experience of losing their parents. The article shows how they can – by means of storytelling – reformulate the story of their lives and find the proverbial pot of gold at the end of the rainbow.

Posttraumatic Stress Disorder After Bereavement: Early Psychological Sequelae of Losing a Close Relative Due to Terminal Cancer

DEFF Research Database (Denmark)

Kristensen, T. E.; Elklit, A.; Karstoft, K. I.

2012-01-01

Very few studies have investigated posttraumatic stress disorder (PTSD) as a consequence of bereavement from terminal illness. Therefore, knowledge on the traumatizing effects of bereavement and risk factors for traumatization from bereavement is rather sparse. This study investigated prevalence...... and predictors of PTSD in a group of people who had recently lost a close relative due to incurable cancer. The participants were 132 persons who were assessed with the Harvard Trauma Questionnaire, the Trauma Symptom Checklist, and the Crisis Support Scale. One month after the loss, 29.5% of the subjects had...

Be known, be available, be mutual: a qualitative ethical analysis of social values in rural palliative care.

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Pesut, Barbara; Bottorff, Joan L; Robinson, Carole A

2011-09-28

Although attention to healthcare ethics in rural areas has increased, specific focus on rural palliative care is still largely under-studied and under-theorized. The purpose of this study was to gain a deeper understanding of the values informing good palliative care from rural individuals' perspectives. We conducted a qualitative ethnographic study in four rural communities in Western Canada. Each community had a population of 10, 000 or less and was located at least a three hour travelling distance by car from a specialist palliative care treatment centre. Data were collected over a 2-year period and included 95 interviews, 51 days of field work and 74 hours of direct participant observation where the researchers accompanied rural healthcare providers. Data were analyzed inductively to identify the most prevalent thematic values, and then coded using NVivo. This study illuminated the core values of knowing and being known, being present and available, and community and mutuality that provide the foundation for ethically good rural palliative care. These values were congruent across the study communities and across the stakeholders involved in rural palliative care. Although these were highly prized values, each came with a corresponding ethical tension. Being known often resulted in a loss of privacy. Being available and present created a high degree of expectation and potential caregiver strain. The values of community and mutuality created entitlement issues, presenting daunting challenges for coordinated change. The values identified in this study offer the opportunity to better understand common ethical tensions that arise in rural healthcare and key differences between rural and urban palliative care. In particular, these values shed light on problematic health system and health policy changes. When initiatives violate deeply held values and hard won rural capacity to address the needs of their dying members is undermined, there are long lasting negative

Be known, be available, be mutual: a qualitative ethical analysis of social values in rural palliative care

Directory of Open Access Journals (Sweden)

Bottorff Joan L

2011-09-01

Full Text Available Abstract Background Although attention to healthcare ethics in rural areas has increased, specific focus on rural palliative care is still largely under-studied and under-theorized. The purpose of this study was to gain a deeper understanding of the values informing good palliative care from rural individuals' perspectives. Methods We conducted a qualitative ethnographic study in four rural communities in Western Canada. Each community had a population of 10, 000 or less and was located at least a three hour travelling distance by car from a specialist palliative care treatment centre. Data were collected over a 2-year period and included 95 interviews, 51 days of field work and 74 hours of direct participant observation where the researchers accompanied rural healthcare providers. Data were analyzed inductively to identify the most prevalent thematic values, and then coded using NVivo. Results This study illuminated the core values of knowing and being known, being present and available, and community and mutuality that provide the foundation for ethically good rural palliative care. These values were congruent across the study communities and across the stakeholders involved in rural palliative care. Although these were highly prized values, each came with a corresponding ethical tension. Being known often resulted in a loss of privacy. Being available and present created a high degree of expectation and potential caregiver strain. The values of community and mutuality created entitlement issues, presenting daunting challenges for coordinated change. Conclusions The values identified in this study offer the opportunity to better understand common ethical tensions that arise in rural healthcare and key differences between rural and urban palliative care. In particular, these values shed light on problematic health system and health policy changes. When initiatives violate deeply held values and hard won rural capacity to address the needs of

Models of Coping with Bereavement : An Updated Overview

NARCIS (Netherlands)

Stroebe, M.S.; Stroebe, W.; Schut, H.A.W.; Boerner, Kathrin

2017-01-01

Bereavement research is reaching the hundred-year landmark of the publication of Freud’s classic 1917 ‘Mourning and Melancholia’, an essay of great significance for subsequent theoretical developments, particularly — in the current context — with regard to the centrality placed on ‘grief work’ in

A multimethod analysis of shared decision-making in hospice interdisciplinary team meetings including family caregivers.

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Washington, Karla T; Oliver, Debra Parker; Gage, L Ashley; Albright, David L; Demiris, George

2016-03-01

Much of the existing research on shared decision-making in hospice and palliative care focuses on the provider-patient dyad; little is known about shared decision-making that is inclusive of family members of patients with advanced disease. We sought to describe shared decision-making as it occurred in hospice interdisciplinary team meetings that included family caregivers as participants using video-conferencing technology. We conducted a multimethod study in which we used content and thematic analysis techniques to analyze video-recordings of hospice interdisciplinary team meetings (n = 100), individual interviews of family caregivers (n = 73) and hospice staff members (n = 78), and research field notes. Participants in the original studies from which data for this analysis were drawn were hospice family caregivers and staff members employed by one of five different community-based hospice agencies located in the Midwestern United States. Shared decision-making occurred infrequently in hospice interdisciplinary team meetings that included family caregivers. Barriers to shared decision-making included time constraints, communication skill deficits, unaddressed emotional needs, staff absences, and unclear role expectations. The hospice philosophy of care, current trends in healthcare delivery, the interdisciplinary nature of hospice teams, and the designation of a team leader/facilitator supported shared decision-making. The involvement of family caregivers in hospice interdisciplinary team meetings using video-conferencing technology creates a useful platform for shared decision-making; however, steps must be taken to transform family caregivers from meeting attendees to shared decision-makers. © The Author(s) 2015.

Bereavement-related depression in the older adult population: a distinct disorder?

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Jozwiak, Natalia; Preville, Michel; Vasiliadis, Helen-Maria

2013-12-01

Bereavement is a phenomenon that shares many symptoms with depression, and that a great number of older adults experience following the loss of a close relative. The objectives of the present study were to (1) determine whether the symptoms of depression reported by bereaved individuals differ from those with non-bereavement minor/major depression (NBRD), (2) assess whether BRD is as persistent during a one year follow-up as compared to NBRD, and (3) identify factors and consequences associated with BRD. The data used for this study came from the Longitudinal Study ESA (Study Health of Elders), conducted between 2005 and 2008, using a representative sample (n=2811) of community-dwelling older adults, aged 65 and over. To test our hypothesis, an exploratory latent class analysis and multivariate logistic regression were used. BRD prevalence among older adults suffering from depression was 39%. BRD individuals report all symptoms of depression, but in lower probabilities, and BRD is as persistent as MDD over 12 months, suggesting that it does not differ from NBRD. The principal factors associated with BRD were widowhood and lower level of education. Individuals with BRD are less likely to consult medical services and be dispensed an antidepressant, compared to NBRD. We have to be cautious when generalizing our findings to individuals with major depression alone, since our results included both minor and major depressions in the same group. No evidence was found that BRD differed from non BRD in terms of depressive symptoms and persistence. The bereavement exclusion criterion in the DSM-IV should be reconsidered. Crown Copyright © 2013 Published by Elsevier B.V. All rights reserved.

Death, bereavement and traumatic loss in Israel: a historical and cultural perspective.

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Witztum, E; Malkinson, R; Rubin, S S

2001-01-01

In the present article, we focus on the experience of bereavement and traumatic loss in Israel and examine the main influences that continue to shape them. For the Jewish population the main features are: religious aspects stemming from Jewish tradition and its variants; the secular and contemporary traditions, the ethos of the Israeli state, and the influence of the struggle to reestablish the Jewish people in its homeland. In an increasingly multicultural society, significant changes are occurring. A series of vignettes of grief and mourning illustrate current issues and practices among religious, secular, kibbutz, Russian and Ethiopian segments of society. The remainder of the article discusses emerging patterns of response to bereavement that are socially constructed and historically situated. We follow the variations in these patterns, from shifting forms of memorialization on the collective level to changes in expressive mood on the individual level, which are mediated by the cultural mosaic of the society. Mental health professionals would benefit from an understanding of the multifaceted fabric of beliefs and cultural-specific customs that shape the mourning rituals and their meanings for the bereaved.

Pilot evaluation of a group therapy program for children bereaved by suicide.

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Daigle, Marc S; Labelle, Réal J

2012-01-01

Thousands of children are bereaved each year by suicide, yet there exists very little literature specifically on the psychological care, programs, and interventions available to help them. (1) To build and validate theoretical models for the Group Therapy Program for Children Bereaved by Suicide (PCBS); (2) to test these models in a preliminary evaluation. In the first part, we built theoretical models, which were then validated by scientists and clinicians. In the second part, the sessions of the PCBS were observed and rated. The participating children were tested pre- and postprogram. Positive changes were observed in the participating children in terms of basic safety, realistic understanding and useful knowledge, inappropriate behaviors, physical and psychological symptoms, child-parent and child-child communication, capacity for social and affective reinvestment, actualization of new models of self and the world, self-esteem, awareness and use of tools, cognitive, verbal, written and drawing abilities, cognitive dissonance, ambivalence, antagonism, and isolation. The changes reported in the bereaved children show that the PCBS has some efficacy.

Palliative Care.

Science.gov (United States)

Swetz, Keith M; Kamal, Arif H

2018-03-06

Palliative care prioritizes symptom management and quality of life throughout the course of serious illness. Regardless of whether care is inpatient or outpatient, primary or subspecialty, a solid understanding of the basics of effective communication, symptom management, and end-of-life care is crucial. This article reviews these essentials and provides an overview of current evidence to support patient-centered palliative care.

Euthanasia embedded in palliative care. Responses to essentialistic criticisms of the Belgian model of integral end-of-life care.

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Bernheim, Jan L; Raus, Kasper

2017-08-01

The Belgian model of 'integral' end-of-life care consists of universal access to palliative care (PC) and legally regulated euthanasia. As a first worldwide, the Flemish PC organisation has embedded euthanasia in its practice. However, some critics have declared the Belgian-model concepts of 'integral PC' and 'palliative futility' to fundamentally contradict the essence of PC. This article analyses the various essentialistic arguments for the incompatibility of euthanasia and PC. The empirical evidence from the euthanasia-permissive Benelux countries shows that since legalisation, carefulness (of decision making) at the end of life has improved and there have been no significant adverse 'slippery slope' effects. It is problematic that some critics disregard the empirical evidence as epistemologically irrelevant in a normative ethical debate. Next, rejecting euthanasia because its prevention was a founding principle of PC ignores historical developments. Further, critics' ethical positions depart from the PC tenet of patient centeredness by prioritising caregivers' values over patients' values. Also, many critics' canonical adherence to the WHO definition of PC, which has intention as the ethical criterion is objectionable. A rejection of the Belgian model on doctrinal grounds also has nefarious practical consequences such as the marginalisation of PC in euthanasia-permissive countries, the continuation of clandestine practices and problematic palliative sedation until death. In conclusion, major flaws of essentialistic arguments against the Belgian model include the disregard of empirical evidence, appeals to canonical and questionable definitions, prioritisation of caregiver perspectives over those of patients and rejection of a plurality of respectable views on decision making at the end of life. 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/.

Recruiting bereaved parents for research after infant death in the neonatal intensive care unit.

Science.gov (United States)

Currie, Erin R; Roche, Cathy; Christian, Becky J; Bakitas, Marie; Meneses, Karen

2016-11-01

Understanding parental experiences following infant death in the neonatal intensive care unit (NICU) is a high research priority and a necessary first step to improving health services. However, recruiting bereaved parents to discuss their experiences on such an extremely sensitive topic can be challenging and research procedures must be planned carefully in order to get an adequate sample. There is little published in the literature detailing specific strategies for recruiting bereaved parents for grief research, especially strategies for contacting parents and identifying factors that might affect participation. The purpose of this paper is to describe the process of recruiting bereaved parents into a qualitative research study exploring parental NICU experiences and grief responses following infant death. We describe a successful recruitment plan that led to the enrollment of difficult to recruit participants such as fathers, and individuals representing minorities and those from lower socioeconomic (SES) groups. Bereaved parents of infants after an NICU hospitalization should continue to be recruited for research studies for their unique perspectives and valuable insights about the devastating experience of infant death. Participants in this study reported more benefits than harm and the results addressed a critical gap in the literature. Copyright © 2016 Elsevier Inc. All rights reserved.

PA26 Unmet needs and stress among caregivers of bedridden stroke patients in north kerala - a community based study.

Science.gov (United States)

Usha, K

2015-04-01

In developing countries informal care by an unpaid relative is the most prevalent form of long-term care. Being bedridden consumes the victim and the caregiver physically, psychologically, socially and financially. In developing countries, strengthening support for family caregivers is essential to sustain long term health care system. Therefore unmet needs and burdens of family caregivers, including inadequate training, respite, and access to support programs should be studied and addressed. To study unmet needs of caregivers of stroke patients in the home settings. To study physical, psychological and social stress of these caregivers. Descriptive Study setting: Four rural panchayats, where home based care is given to bed ridden patients by the palliative team of our medical college. Sampling design: Convenience sampling study population: Care givers of bedridden stroke patients tool: A semi structured questionnaire Forty caregivers participated in the study. Their mean age was 51 years. Most were wives (15, 37.5%) and daughters (14, 35%). All belonged to low socioeconomic class. Unmet needs were lack of recreation (67%), inadequate sleep (67%), total responsibility (65%), illnesses (53%) and insufficient money (67%). Severe to moderate physical, psychological and social stress was seen in 90%, 87.5% and 70% of caregivers respectively. Services to be aimed primarily at informal caregivers may be designed to increase the level of knowledge and emotional support of caregivers, provide respite, or provide financial benefits as social schemes. © 2015, 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.

What is Pediatric Palliative Care?

Science.gov (United States)

... FAQ Handout for Patients and Families What Is Pediatric Palliative Care? Pediatric Palliative care (pronounced pal-lee-uh-tiv) is ... life for both the child and the family. Pediatric palliative care is provided by a team of ...

Bereaved parents’ online grief communities

DEFF Research Database (Denmark)

Christensen, Dorthe Refslund; Hård af Segerstad, Ylva; Kasperowski, Dick

2017-01-01

This article presents results from case studies of online grief communities for bereaved parents in Denmark and Sweden (Christensen & Sandvik 2013, 2015a; Hård af Segerstad & Kasperowski, 2015), analyzing how development of practices and norms for grieving and mourning online are related...... to the conditions for participation in the online forums, and to dominant ideas of grief in society as such. Rooted in contemporary research on grief and mourning, we discuss practices of tabooization, de-tabooization or even re-tabooization in the different online forums and how norms and traditions are performed...

Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups.

Science.gov (United States)

Aoun, Samar M; Deas, Kathleen; Howting, Denise; Lee, Gabriel

2015-01-01

A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Carer Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs [corrected]. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time. An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers' feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation