WorldWideScience

Sample records for intellectually disabled people

  1. Sexual health for people with intellectual disability.

    Science.gov (United States)

    Eastgate, Gillian

    2008-01-01

    People with intellectual disability experience the same range of sexual needs and desires as other people. However, they experience many difficulties meeting their needs. They may be discouraged from relieving sexual tension by masturbating. They face a high risk of sexual abuse. They are likely not to be offered the full range of choices for contraception and sexual health screening. Poor education and social isolation may increase their risk of committing sexual offences. However, with appropriate education and good social support, people with intellectual disability are capable of safe, constructive sexual expression and healthy relationships. Providing such support is an essential part of supporting people with intellectual disability.

  2. Mortality in People with Intellectual Disabilities

    Science.gov (United States)

    Heslop, Pauline; Lauer, Emily; Hoghton, Matt

    2015-01-01

    This paper reviews why an understanding of mortality data in general, and in relation to people with intellectual disabilities in particular, is an important area of concern, and introduces the papers in this Special Edition.

  3. Sibling advocates of people with intellectual disabilities.

    Science.gov (United States)

    Ying Li, Eria Ping

    2006-06-01

    The aim of this study was to examine the experience of the first generation of sibling advocates in Hong Kong. A qualitative approach was adopted and six sibling advocates of people with intellectual disabilities from one non-government organization were interviewed. Data were analyzed using a constant comparative method and content analysis. Findings revealed that the six participants were reactive in the process of taking up the caregiver responsibility and they performed three functions: to advocate for more service provision, to improve service quality, and to facilitate communication between individual service units and family members of people with intellectual disabilities. All of the participants expressed that they needed support from service providers when they tried to function as the sibling advocates. Strategies to promote the involvement of siblings of people with intellectual disabilities as advocates are discussed and it is expected that more siblings of people with intellectual disabilities will be supported to have a higher level of involvement in advocacy.

  4. Psychopathology in Young People With Intellectual Disability

    Science.gov (United States)

    Einfeld, Stewart L.; Piccinin, Andrea M.; Mackinnon, Andrew; Hofer, Scott M.; Taffe, John; Gray, Kylie M.; Bontempo, Daniel E.; Hoffman, Lesa R.; Parmenter, Trevor; Tonge, Bruce J.

    2008-01-01

    Context Comorbid severe mental health problems complicating intellectual disability are a common and costly public health problem. Although these problems are known to begin in early childhood, little is known of how they evolve over time or whether they continue into adulthood. Objective To study the course of psychopathology in a representative population of children and adolescents with intellectual disability. Design, Setting, and Participants The participants of the Australian Child to Adult Development Study, an epidemiological cohort of 578 children and adolescents recruited in 1991 from health, education, and family agencies that provided services to children with intellectual disability aged 5 to 19.5 years in 6 rural and urban census regions in Australia, were followed up for 14 years with 4 time waves of data collection. Data were obtained from 507 participants, with 84% of wave 1 (1991-1992) participants being followed up at wave 4 (2002-2003). Main Outcome Measures The Developmental Behaviour Checklist (DBC), a validated measure of psychopathology in young people with intellectual disability, completed by parents or other caregivers. Changes over time in the Total Behaviour Problem Score and 5 subscale scores of the DBC scores were modeled using growth curve analysis. Results High initial levels of behavioral and emotional disturbance decreased only slowly over time, remaining high into young adulthood, declining by 1.05 per year on the DBC Total Behaviour Problem Score. Overall severity of psychopathology was similar across mild to severe ranges of intellectual disability (with mean Total Behaviour Problem Scores of approximately 44). Psychopathology decreased more in boys than girls over time (boys starting with scores 2.61 points higher at baseline and ending with scores 2.57 points lower at wave 4), and more so in participants with mild intellectual disability compared with those with severe or profound intellectual disability who diverged from

  5. Attitudes towards People with Disabilities--What Do People with Intellectual Disabilities Have to Say?

    Science.gov (United States)

    Corr McEvoy, Sandra; Keenan, Emer

    2014-01-01

    Attitudes towards people with intellectual disabilities have traditionally been very negative, resulting in people with intellectual disabilities being treated badly by other. This claim was explored by conducting focus groups with adults who have an intellectual disability to find out about their everyday experiences in different places and using…

  6. 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.

  7. Overweight and Obesity in Older People with Intellectual Disability

    Science.gov (United States)

    de Winter, C. F.; Bastiaanse, L. P.; Hilgenkamp, T. I. M.; Evenhuis, H. M.; Echteld, M. A.

    2012-01-01

    Overweight and obesity are major health problems associated with increased cardiovascular disease risk, which is not sufficiently studied in people with intellectual disability yet. The present study was part of the Healthy Ageing in Intellectual Disability (HA-ID) study. The aim of this study was to establish (1) the prevalence of overweight,…

  8. Qualitative Study of Malnutrition in People with Intellectual Disabilities

    Science.gov (United States)

    Franssen, Janine J. L.; Maaskant, Marian A.; van Schrojenstein Lantman-de Valk, Henny M. J.

    2011-01-01

    The prevalence of underweight status is relatively high in persons with intellectual disabilities. However, it is not clear whether this is due to malnourishment. The authors sought to examine the awareness and knowledge of physicians, dieticians, and direct care staff regarding malnutrition in people with intellectual disabilities. They also…

  9. Health promotion for people with intellectual disabilities - A concept analysis.

    Science.gov (United States)

    Roll, Anne E

    2018-03-01

    Whereas 'health promotion' is a well-known concept for healthcare professionals, the concept of 'health promotion for people with intellectual disabilities' and its unique associated challenges are not well understood. This article provides a systematic analysis of how health promotion is being conceptualised for people with intellectual disabilities and how health promotion can work best in the light of this group's specific needs and limitations. Rodgers' evolutionary concept analysis. MEDLINE, PsycINFO, CINAHL and SocINDEX were searched using the search terms 'health promotion', 'people with intellectual disabilities' and 'developmental disabilities'. This review includes studies published between 1992 and 2014. A total of 52 articles were included. Health promotion for people intellectual disabilities, as discussed in the literature, focuses on four aspects, namely supporting a healthy lifestyle, providing health education, involving supporters and being person-centred. Antecedents of the concept 'health promotion for people with intellectual disabilities' were healthcare access and sensitised healthcare providers. The outcomes were improved health, being empowered, enhanced quality of life and reduced health disparities. This analysis provides a solid foundation for healthcare stakeholders' planning, implementing and evaluating health-promotion activities for people with intellectual disabilities at the policy level and in the community. © 2017 Nordic College of Caring Science.

  10. The prevalence of constipation in institutionalized people with intellectual disability

    NARCIS (Netherlands)

    Böhmer, C. J.; Taminiau, J. A.; Klinkenberg-Knol, E. C.; Meuwissen, S. G.

    2001-01-01

    Constipation is a common problem in people with intellectual disability (ID). Laxatives are frequently prescribed with disappointing results. The prevalence of constipation was investigated in a random population of 215 people with ID (IQ < 50) and constipation was correlated with clinical symptoms.

  11. Including People with Intellectual Disabilities in Qualitative Research

    Science.gov (United States)

    Hall, Sarah A.

    2013-01-01

    The voice of people with intellectual disabilities (ID) is needed in the literature to best understand their unique experiences and perspectives. Researchers face challenges in conducting interviews with people with ID who are limited in conceptual and verbal language skills. It can also be difficult to obtain participants with ID because of…

  12. Autonomy Support in People with Mild-to-Borderline Intellectual Disability: Testing the Health Care Climate Questionnaire-Intellectual Disability

    Science.gov (United States)

    Frielink, Noud; Schuengel, Carlo; Embregts, Petri J. C. M.

    2018-01-01

    Background: Autonomy support in people with intellectual disability (ID) is an important yet understudied topic. Psychometrically sound instruments are lacking. This study tested the factor structure and reliability of an instrument for assessing the extent people with intellectual disability perceive their support staff as autonomy supportive.…

  13. The main signs of ageing in people with intellectual disability.

    Science.gov (United States)

    Wark, Stuart; Hussain, Rafat; Edwards, Helen

    2016-12-01

    Investigations around ageing with an intellectual disability have increased substantially in the past three decades. A research gap continued to exist regarding the detection of ageing issues in this cohort of people, particularly in rural areas where access to specialist support continued to be limited. The purpose of this study was to identify the main signs of ageing in rural people with intellectual disabilities. A multi-round Delphi design was used to examine what signs of ageing were observed by disability support staff, who assisted people with intellectual disability. The project was conducted across nine of the ten rural regions (as defined by the government funding body) in New South Wales (NSW). There were 31 participants representing 14 non-government organisations. The group was composed of 26 women and 5 men, with a mean age of 47 years, who averaged 10-year experience with people with intellectual disabilities. The objective was to gain the direct input of rurally based disability workers to identify the main signs of ageing in people with intellectual disabilities. Thirty-two specific signs of ageing, including emerging mental health issues, grief, loss of identity and aggression, were identified. A thematic analysis indicated two main categories: mental/emotional functioning and physical functioning. When carers have the information and skills needed to identify the main signs of ageing, they can more accurately recognise and address potential problems in a timely manner. Such understandings have the potential to reduce premature admissions to residential aged-care. © 2016 National Rural Health Alliance Inc.

  14. The effects of rehabilitation on intellectually-disabled people - a ...

    African Journals Online (AJOL)

    Background: Rehabilitation has emerged as a comprehensive approach to addressing intellectually-disabled peoples' skill deficits, improving competencies and facilitating optimal functioning in order to provide the greatest possible measure of social and economic participation, self-reliance and independence. Objective: ...

  15. Cardiovascular Disease Risk Factors in Older People with Intellectual Disabilities

    NARCIS (Netherlands)

    C.F. de Winter (Channa)

    2014-01-01

    markdownabstract__Abstract__ Chapter 1 General introduction There is an increasing group of older people with intellectual disability in The Netherlands, reaching almost the same life expectancy as the general population. Age-related diseases, such as cardiovascular disease, cancer and dementia

  16. Aggression as Positive Reinforcement in People with Intellectual Disabilities

    Science.gov (United States)

    May, Michael E.

    2011-01-01

    From an applied behavior-analytic perspective, aggression in people with intellectual disabilities is mostly maintained by social reinforcement consequences. However, nonsocial consequences have also been identified in functional assessments on aggression. Behaviors producing their own reinforcement have been labeled "automatic" or "nonsocial" in…

  17. Sexual Risk Assessment for People with Intellectual Disabilities

    Science.gov (United States)

    Embregts, P.; van den Bogaard, K.; Hendriks, L.; Heestermans, M.; Schuitemaker, M.; van Wouwe, H.

    2010-01-01

    Given that sexually offensive behavior on the part of people with intellectual disabilities has been identified as a significant problem, we developed a risk assessment questionnaire, that takes not only various static and dynamic factors into account but also environmental risk variables. Psychologists and staff members completed this Risk…

  18. Centres for People with Intellectual Disabilities: Attendees' Perceptions of Benefit

    Science.gov (United States)

    Gajewska, Urszula; Trigg, Richard

    2016-01-01

    Background: Day and community learning centres aim to provide intellectually disabled (ID) people with social support, life skills and greater control over their lives. However, there is little research exploring the benefits of attendance from the perspective of attendees and whether these goals are met. Materials and methods: Unstructured…

  19. A Systematic Review of Suicidality in People with Intellectual Disabilities.

    Science.gov (United States)

    Dodd, Philip; Doherty, Ailbhe; Guerin, Suzanne

    2016-01-01

    Suicidality in people with intellectual disability has not been extensively researched. To identify the nature of the research that has actually been conducted on this topic. A search of research databases was conducted according to predefined criteria. Key information was extracted and rated for methodological merit. Twenty-four studies met the inclusion criteria for this systematic review. The aspects of suicidality investigated, which varied among studies, included suicidal attempts, behavior, ideation, and completed suicide. Thirteen studies highlighted risk factors for suicidality in this population. The most frequently noted risk factors were a concurrent mental health difficulty and the level of intellectual disability. Eight studies referred to people with intellectual disabilities' understanding of the concept of death or suicide. Various methodological issues were identified in the studies included. In what we believe to be first systematic review of suicidality in people with intellectual disabilities, it was apparent that well-designed, standardized research studies on the topic are scarce. There is consequently limited evidence to guide prevention and intervention strategies for suicidality in this population.

  20. Autonomy support in people with mild to borderline intellectual disability : Testing the Health Care Climate Questionnaire-Intellectual Disability (HCCQ-ID)

    NARCIS (Netherlands)

    Frielink, N.; Schuengel, C.; Embregts, P.J.C.M.

    2017-01-01

    Background Autonomy support in people with intellectual disability (ID) is an important yet understudied topic. Psychometrically sound instruments are lacking. This study tested the factor structure and reliability of an instrument for assessing the extent people with intellectual disability

  1. "I Never Thought about It": Teaching People with Intellectual Disability to Vote

    Science.gov (United States)

    Agran, Martin; MacLean, William; Andren, Katherine Anne Kitchen

    2015-01-01

    Despite an increasing commitment in promoting the full inclusion of people with intellectual disability in their communities, it appears that few adults with intellectual disability participate in elections as registered voters. We surveyed a variety of stakeholders about voting by people with intellectual disability using quantitative and…

  2. Public attitudes towards people with intellectual disabilities: a qualitative comparison of white British & South Asian people.

    Science.gov (United States)

    Coles, Sarah; Scior, Katrina

    2012-03-01

    National and international polices promote the acceptance, integration and inclusion of people with intellectual disabilities into mainstream society. However, there is little systematic research into general population attitudes towards people with intellectual disabilities, and even less research, which considers the impact of culture on attitudes. The aim of this study was to explore how young people from White British and South Asian backgrounds differ in their attitudes towards people with intellectual disabilities and above all, how they arrive at their beliefs. A qualitative design utilizing focus groups and individual interviews with White British and South Asian adolescents aged 16-19 years (N = 61) was employed. Questionnaire data were collected to compare this sample to findings from a larger study run concurrently (Attitudes to people with intellectual disabilities: a cross cultural study. Thesis, University College London). Interview and focus group data were analysed using thematic analysis. Thematic analysis yielded five themes and pointed to widespread confusion about the concept of 'intellectual disability', not helped by the continuing invisibility of people with intellectual disabilities in the media. Participants expressed many positive beliefs, yet closer analysis revealed that underlying these may be more ambivalent or even hostile attitudes. Key differences between the two cultural groups are discussed. The findings highlight the need for raising public awareness and the importance of culturally sensitive support. © 2011 Blackwell Publishing Ltd.

  3. "It Is Only Natural….": Attitudes of Young People with Intellectual Disabilities toward Sexuality in Greece

    Science.gov (United States)

    Karellou, Ioanna

    2017-01-01

    Although there is an increasing awareness of the rights of people with intellectual disabilities, limited progress has been made in supporting people with intellectual disabilities to create and sustain intimate personal relationships in Greece. This article looks at the attitudes of 66 adolescents and young adults with intellectual disabilities…

  4. Social Inclusion and People with Intellectual Disability and Challenging Behaviour: A Systematic Review

    Science.gov (United States)

    Bigby, Christine

    2012-01-01

    Background: Social inclusion is central to disability policies internationally. The high risk of social exclusion for people with intellectual disability is compounded for those with challenging behaviour. Method: A systematic literature review examined how social inclusion of people with intellectual disability and challenging behaviour has been…

  5. [Community trajectories of mentally ill and intellectually disabled young people].

    Science.gov (United States)

    Fleury, Marie-Josée; Grenier, Guy

    2013-01-01

    In the context of reforms in the field of disability, this study documents the trajectories and mechanisms of support for young people with mental illness or intellectual disability or pervasive developmental disorders, during the teen-adult life transition period; andfactorsfostering or impeding this transition for their maintenance in an everyday environment, particularly in SESSAD (special education and home care service) and the SAMSAH/ SPAC (medico-social support for adults with disabilities/support services in social life). This study was conducted in the French department of Seine-et-Marne. It was supported by a mixed call for tenders, in which 77 respondents (professionals, families and users), and 26 organizations were consulted. The study shows that few young adults in SAMSAH/SPAC programmes are derived from SESSAD, and they encounter major difficulties living in an everyday environment, particularly during the transition period. Clinical or socio-economic factors related to the profiles of users or healthcare service organization facilitate or hinder the inclusion of young people in an everyday environment. Support for users was also often limited to followup over a suboptimal period, and was hampered by insufficient networking within the regional healthcare system. On the other hand, empowerment of users and their optimal inclusion in an everyday environment, as founding principles of the reform, constitute major action priorities for healthcare structures. Strengthening services for young people (16-25 years), including integration strategies, is recommended in order to establish an integrated network of services in the field of disability.

  6. 76 FR 68486 - President's Committee for People With Intellectual Disabilities: Committee Meeting via Conference...

    Science.gov (United States)

    2011-11-04

    ...) should notify Genevieve Swift, PCPID Executive Administrative Assistant, at Edith.Swift@acf.hhs.gov , or... Taylor Roach, Senior Advisor, President's Committee for People with Intellectual Disabilities, The...

  7. Medical Students' Attitudes towards Health Care for People with Intellectual Disabilities: A Qualitative Study

    Science.gov (United States)

    Ryan, Travis A.; Scior, Katrina

    2016-01-01

    Background: People with intellectual disabilities experience serious health inequalities (e.g. they die younger than people without intellectual disabilities). Medical students' attitudes towards health care for this population warrant empirical attention because, as tomorrow's doctors, they will affect the health inequalities that people with…

  8. Developing a questionnaire on physical activity support of people with (profound) intellectual (and multiple) disabilities : Experiences from the Netherlands

    NARCIS (Netherlands)

    Bossink, Leontien; van der Putten, Annette; Vlaskamp, Carla

    2017-01-01

    Introduction: People with intellectual disabilities (ID) undertake extremely low levels of physical activity, which is even more true in people with profound intellectual and multiple disabilities (PIMD). Physical activity approaches, particularly for people with PIMD, are more likely to be

  9. A study of behaviour problems and psychiatric disorders among people with intellectual disability

    OpenAIRE

    Myrbakk, Even

    2008-01-01

    The present thesis investigates behaviour problems and their relationship to psychiatric disorders in people with intellectual disability living in the northern part of Norway, as well as the concordances between four of the most commonly used assessment instruments for psychiatric disorders in people with intellectual disability. A total of one hundred and eighty-one individuals with intellectual disability living in the counties of Nordland, Troms and Finnmark participated in the studies. ...

  10. Self Stigma in People with Intellectual Disabilities and Courtesy Stigma in Family Carers: A Systematic Review

    Science.gov (United States)

    Ali, Afia; Hassiotis, Angela; Strydom, Andre; King, Michael

    2012-01-01

    People with intellectual disability are one of the most stigmatised groups in society. Despite this, research in this area has been limited. This paper provides a review of studies examining self stigma in people with intellectual disability, and courtesy and affiliate stigma in family carers. An electronic search of studies published between 1990…

  11. End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives

    NARCIS (Netherlands)

    Wagemans, A.M.; Schrojenstein Lantman-de Valk, H.M. van; Proot, I.M.; Metsemakers, J.; Tuffrey-Wijne, I.; Curfs, L.M.G.

    2013-01-01

    Background: Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. Aim: To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. Design: A qualitative study

  12. Barriers and Enablers to Accessing Mental Health Services for People with Intellectual Disability: A Scoping Review

    Science.gov (United States)

    Whittle, Erin Louise; Fisher, Karen R.; Reppermund, Simone; Lenroot, Rhoshel; Trollor, Julian

    2018-01-01

    Background: It is well established that people with an intellectual disability have high rates of mental health problems, yet rates of uptake of services do not match need. Aim: To identify the current literature pertaining to the barriers and facilitators to access to mental health services for people with an intellectual disability. Method: A…

  13. Attributional and Emotional Determinants of Aggression in People with Mild Intellectual Disabilities.

    Science.gov (United States)

    Baker, Warren; Bramston, Paul

    1997-01-01

    People (n=103) with mild intellectual disabilities responded to several scales of anger, hostility, aggression, and personality. Results were consistent with earlier studies of relationships among anger, hostility, and aggression conducted with the general population. Findings suggest that people with intellectual disabilities may benefit from…

  14. Barriers to Increasing the Physical Activity of People with Intellectual Disabilities

    Science.gov (United States)

    Cartwright, Luke; Reid, Marie; Hammersley, Richard; Walley, Robert M.

    2017-01-01

    Background: The prevalence of obesity, inactivity and related morbidity and mortality is higher amongst people with intellectual disabilities than in the population in general, an issue of global concern. This research examined the perspectives of people with intellectual disabilities and their carers, on exercise and activity. Materials and…

  15. Mortality of People with Intellectual Disabilities in England: A Comparison of Data from Existing Sources

    Science.gov (United States)

    Heslop, Pauline; Glover, Gyles

    2015-01-01

    Background: At present, there is limited statistical information about mortality of people with intellectual disabilities in England. This study explores the data that are currently available. Materials and Methods: Four recent sources of data about mortality of people with intellectual disabilities in England are reviewed: the Confidential…

  16. Perceptions of the Risks and Benefits of Internet Access and Use by People with Intellectual Disabilities

    Science.gov (United States)

    Chadwick, Darren D.; Quinn, Sally; Fullwood, Chris

    2017-01-01

    Background: Information and communication technologies, with the Internet at the forefront, have the potential to enhance the knowledge, service, employment, development and social interactional opportunities available to people with intellectual disabilities. Despite this, people with intellectual disabilities are not accessing the Internet to…

  17. The World Report on Disability and People with Intellectual Disabilities

    Science.gov (United States)

    Officer, Alana; Shakespeare, Tom

    2013-01-01

    The "World Report on Disability" was requested by the World Health Assembly, the governing body of the World Health Organization (WHO). Because disability is broader than health, WHO partnered with the World Bank. The "World Report" was published in 2011 and provides a comprehensive scientific analysis on the global situation…

  18. "It's My Life": Autonomy and People with Intellectual Disabilities

    Science.gov (United States)

    Björnsdóttir, Kristín; Stefánsdóttir, Guðrún V; Stefánsdóttir, Ástríður

    2015-01-01

    This article discusses autonomy in the lives of adults with intellectual disabilities. The article draws on inclusive research in Iceland with 25 women and 16 men and employs ideas of relational autonomy from the perspectives of the Nordic relational approach to disability. In this article, we examine autonomy in relation to private life, that is,…

  19. Mainstream health professionals' stigmatising attitudes towards people with intellectual disabilities : a systematic review

    NARCIS (Netherlands)

    Pelleboer-gunnink, H.A.; Van Oorsouw, W.M.W.J.; Van Weeghel, J.; Embregts, P.J.C.M.

    Background Equal access to mainstream healthcare services for people with intellectual disabilities (ID) still requires attention. Although recent studies suggest that health professionals hold positive attitudes towards people with ID, stigmatising attitudes may influence their efforts to serve

  20. ADHD and Challenging behaviour in People with Intellectual Disability: should we screen for ADHD?

    Science.gov (United States)

    Perera, Bhathika; Courtenay, Ken

    2017-09-01

    People with Intellectual Disability (ID) have cognitive impairments that affect their level of functioning the causes of which are multiple and often unknown. Behavioural difficulties are common among people with ID. Attention Deficit Hyperactivity Disorder (ADHD) is recognised more among people with Intellectual Disability and could be a cause of problem behaviours. Screening and assessing for ADHD in people with ID is difficult because of the paucity of robust assessment tools and diagnostic criteria.

  1. Homosexuality among People with a Mild Intellectual Disability: An Explorative Study on the Lived Experiences of Homosexual People in the Netherlands with a Mild Intellectual Disability

    Science.gov (United States)

    Stoffelen, J.; Kok, G.; Hospers, H.; Curfs, L. M. G.

    2013-01-01

    Background: Empirical research on homosexuality among people with an intellectual disability (ID) is limited and, to date, very little is known regarding the personal experiences of gay and lesbian people with an ID. This study set out to answer the question: "What are the lived experiences of a specific cohort of homosexual people with an…

  2. Changes in Domain Specific Self-Perception amongst Young People with Intellectual Disability: A Longitudinal Study

    Science.gov (United States)

    O'Byrne, Clara; Muldoon, Orla T.

    2018-01-01

    This study examines the changes that occur in multidimensional self-concept of adolescents with a diagnosis of intellectual disabilities, across gender and category of intellectual disability (borderline, mild, moderate) groups. A sample of 54 young people completed the Harter Self-Perception Profile. Using a three-wave longitudinal study…

  3. How Do People with Intellectual Disability Describe the Experience of Falling in Love?

    Science.gov (United States)

    Mattila, Jenni; Uusiautti, Satu; Määttä, Kaarina

    2017-01-01

    The phenomenon of falling in love among people with intellectual disability has not received much attention in research. In this study, seven Finnish young adults (5 women and 2 men) with mild intellectual disability (ID) were asked about their experiences of falling in love. They were interviewed with a qualitative themed interview method. The…

  4. Evaluation of a Social Network Intervention for People with Mild to Borderline Intellectual Disabilities

    Science.gov (United States)

    van Asselt-Goverts, A. E.; Embregts, P. J. C. M.; Hendriks, A. H. C.

    2018-01-01

    Background: Little is known about the effectiveness of interventions aimed at enhancing the social networks of people with intellectual disabilities. This study explores the results of such an intervention. How did the clients with mild to borderline intellectual disabilities and their support workers evaluate the intervention? What did they learn…

  5. Evaluation of a social network intervention for people with mild to borderline intellectual disabilities

    NARCIS (Netherlands)

    van Asselt-Goverts, A.E.; Embregts, P.J.C.M; Hendriks, A.H.C.

    2018-01-01

    Background: Little is known about the effectiveness of interventions aimed at enhancing the social networks of people with intellectual disabilities. This study explores the results of such an intervention. How did the clients with mild to borderline intellectual disabilities and their support

  6. Research Ethics and the Use of Visual Images in Research with People with Intellectual Disability

    Science.gov (United States)

    Boxall, Kathy; Ralph, Sue

    2009-01-01

    The aim of this paper is to encourage debate about the use of creative visual approaches in intellectual disability research and discussion about Internet publication of photographs. Image-based research with people with intellectual disability is explored within the contexts of tighter ethical regulation of social research, increased interest in…

  7. Promoting Health of People with Intellectual Disabilities: Views of Professionals Working in Group Homes

    Science.gov (United States)

    Wahlström, Lina; Bergström, Helena; Marttila, Anneli

    2014-01-01

    Deinstitutionalisation has influenced the life situation for people with intellectual disabilities, whilst the experiences of health promotion in group homes now are limited. This study aimed to explore aspects important to consider when promoting health amongst persons with intellectual disabilities in group homes, from the perspective of…

  8. The effects of rehabilitation on intellectually-disabled people – a systematic review

    Directory of Open Access Journals (Sweden)

    Ernest J. Sechoaro

    2014-08-01

    Objective: To synthesise critically and summarise the best available evidence of the effects of rehabilitation on intellectually-disabled people. Method: Literature searches of different electronic databases and manual searches were conducted using selected keywords. Studies on the effects of rehabilitation on intellectually-disabled people were selected systematically, appraised critically for methodological quality and summarised. Results: Rehabilitation interventions indicated good outcomes with regard to intellectually-disabled people. Findings showed that people with mild to moderate intellectual disabilities improved in terms of activities of daily living (ADL after rehabilitation. Improvement was noted in ADL, self-care skills, communication skills and cognitive achievements. Conclusion: Findings demonstrated positive rehabilitation effects on intellectually-disabled people. This study contributes to the comprehensive nursing care of intellectually-disabled people by endorsement of the effectiveness of rehabilitation in terms of ADL, self-care skills, communication skills and cognitive achievements. The collected evidence of this study may contribute to the education of more effective nurse practitioners involved in the daily care and rehabilitation of intellectually-disabled people.

  9. Supporting primary healthcare professionals to care for people with intellectual disability: a research agenda.

    Science.gov (United States)

    Lennox, Nicholas; Van Driel, Mieke L; van Dooren, Kate

    2015-01-01

    The vast health inequities experienced by people with intellectual disability remain indisputable. Persistent and contemporary challenges exist for primary healthcare providers and researchers working to contribute to improvements to the health and well-being of people with intellectual disability. Over two decades after the only review of supports for primary healthcare providers was published, this paper contributes to an evolving research agenda that aims to make meaningful gains in health-related outcomes for this group. The present authors updated the existing review by searching the international literature for developments and evaluations of multinational models of care. Based on our review, we present three strategies to support primary healthcare providers: (i) effectively using what we know, (ii) considering other strategies that offer support to primary healthcare professionals and (iii) researching primary health care at the system level. Strengthening primary care by supporting equitable provision of health-related care for people with intellectual disability is a much needed step towards improving health outcomes among people with intellectual disability. More descriptive quantitative and qualitative research, as well as intervention-based research underpinned by rigorous mixed-methods evaluating these strategies at the primary care level, which is sensitive to the needs of people with intellectual disability will assist primary care providers to provide better care and achieve better health outcomes. Many people with intellectual disability have poor health. The authors reviewed what has been written by other researchers about how to improve the health of people with intellectual disability. In the future, people who support adults with intellectual disability should continue doing what they do well, think of other ways to improve health, and do more research about health. At all times, the needs of people with intellectual disability should be the

  10. Lived experiences of student nurses caring for intellectually disabled people in a public psychiatric institution

    Directory of Open Access Journals (Sweden)

    Annie Temane

    2016-06-01

    Full Text Available Background: Caring for intellectually disabled people can be demanding for student nurses who are novices in the nursing profession. To ensure that quality nursing care is provided, student nurses should have an understanding of and a positive attitude towards intellectually disabled people. Nursing intellectually disabled people can be a challenge for the student nurses. Therefore, student nurses need to be able to deal with challenges of caring for intellectually disabled people. Objective: This article aims to explore and describe experiences of student nurses caring for intellectually disabled people in a public psychiatric institution. Design and method: A qualitative, exploratory, descriptive and contextual research design was used. Data were collected through individual in-depth phenomenological interviews, naïve sketches and field notes. Thematic analysis was utilised to analyse the collected data. Results were contextualised within the literature and measures to ensure trustworthiness were adhered to. Ethical principals were also applied throughout the research process. Results: Five themes emerged from the data. Student nurses experienced a profoundly unsettling impact on their whole being when caring for intellectually disabled people; they developed a sense of compassion and a new way of looking at life, and experienced a need for certain physical, mental and spiritual needs to be met. Conclusion: From the results, it is evident that student nurses were challenged in caring for intellectually disabled people. However, they developed a sense of awareness that intellectually disabled people have a need to be cared for like any other person. Keywords: experiences, student nurses, caring, intellectually disabled people, public psychiatric institution

  11. Co-researching with people who have intellectual disabilities: insights from a national survey.

    Science.gov (United States)

    O'Brien, Patricia; McConkey, Roy; García-Iriarte, Edurne

    2014-01-01

    Inclusive research with people with intellectual disabilities is growing internationally but with few studies examining its feasibility. In undertaking a national study exploring what life was like in Ireland for people with intellectual disabilities, a community of practice was developed involving a core group of co-researchers: five people with intellectual disabilities, four university researchers and three service support staff. An additional cadre of 15 co-researchers with intellectual disabilities was recruited to undertake data gathering and analysis with 23 focus groups involving 168 participants. The research experience was documented through oral feedback, progress reports, minutes and a project review. The key learning is documented arising from the setting up of an inclusive advisory group and implementation of each of six research steps. The study demonstrates feasibility and the added value of university co-researchers recruiting and developing skills together with co-researchers with intellectual disabilities. Topics for further research and development are identified. This paper tells you about how people with intellectual disabilities worked with a group of university researchers. Both groups were called co-researchers and together they ran 23 focus groups across Ireland. People with intellectual disabilities talked about their lives and what could make them better. They said they needed to have a good place to live; a job; enough money; relationships; and acceptance as respected citizens. The university co-researchers wrote about what it was like doing research together and how people with intellectual disabilities joined the advisory group; decided on the questions; ran focus groups; and presented findings. Together they grew into a community of researchers where the university co-researchers shared their research skills and people with intellectual disabilities shared what it was like living with a disability. They both saw great value in

  12. 76 FR 29250 - President's Committee for People With Intellectual Disabilities; Notice of Meeting

    Science.gov (United States)

    2011-05-20

    ... Genevieve Swift, PCPID Executive Administrative Assistant, via e-mail at Edith.Swift@acf.hhs.gov , or via... contact Laverdia Taylor Roach, Director, President's Committee for People with Intellectual Disabilities...

  13. Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes.

    NARCIS (Netherlands)

    Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H. van

    2012-01-01

    Objective: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes. Methods: A qualitative study, 13 caregivers participated in semi-structured interviews. Results: Professional caregiver support in

  14. Modification of motivational interviewing for use with people with mild intellectual disability and challenging behavior

    NARCIS (Netherlands)

    Frielink, N.; Embregts, P.J.C.M.

    2013-01-01

    Background Motivational interviewing is a promising method to increase treatment motivation for people with mild intellectual disability and challenging behaviour. The purpose of the present study was to identify how professionals could adapt motivational interviewing techniques for use with

  15. Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes.

    NARCIS (Netherlands)

    Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H.M. van

    2012-01-01

    OBJECTIVE: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes. METHODS: A qualitative study, 13 caregivers participated in semi-structured interviews. RESULTS: Professional caregiver support in

  16. Mothers with intellectual disabilities

    OpenAIRE

    Kolarič, Sandra

    2015-01-01

    For the theoretical part of this master's thesis foreign literature and finished foreign researches were studied. In this part of the thesis the characteristics of mothers with intellectual disabilities; factors, which influence the success of carrying out their mother role; and the rights of people with intellectual disabilities as parents, all based on Slovene legislation are included. We listed reasons for limiting reproduction for women with intellectual disabilities and issues concerning...

  17. People with an intellectual disability living in an intentional community.

    Science.gov (United States)

    Randell, M; Cumella, S

    2009-08-01

    Hospital closure programmes in England have generally sought to attain a fulfilling life for people with an intellectual disability by locating them in domestic-style housing in urban settings. Few have been placed in intentional or 'village' communities. Yet comparative studies of different housing types have found that intentional communities have better or similar outcomes for their residents than dispersed housing or residential clusters on former hospital sites. A possible explanation is the distinctive pattern of social relationships that exist in many intentional communities and the impact this has on the lives of their residents. This paper reports the results of research that explores the perceptions of people with an ID living in an intentional community and the meaning of their community to them. The research used an ethnographic approach to interview a sample of 15 residents in a large intentional community (Botton Village), which is part of the Camphill Movement. Interviews used Makaton, pictures and symbols where required. Respondents included 10 men and 5 women aged between 38 and 78 years. Length of residence in Botton Village ranged from 5 to 50 years. All lived with the families of co-workers and valued these relationships. All but one (who had retired) worked in a diverse range of employment in the village. Almost all were positive about their work. Respondents reported that they took part in both individual and communal leisure activities and all but two had a network of friends. Opportunities for friendship were enhanced by proximity to other people with an ID and a sense of personal security in the village. As in many villages and communities in society in general, these advantages were balanced by some loss of privacy. Results confirm those from earlier studies of intentional communities and suggest that positive outcomes derive from the absence of the overt subordination of residents to staff, the facilitation of friendship with other people

  18. Social inclusion and people with intellectual disability and challenging behaviour: a systematic review.

    Science.gov (United States)

    Bigby, Christine

    2012-12-01

    Social inclusion is central to disability policies internationally. The high risk of social exclusion for people with intellectual disability is compounded for those with challenging behaviour. A systematic literature review examined how social inclusion of people with intellectual disability and challenging behaviour has been researched and operationalised in the empirical literature, and aimed to determine what evidence exists about the extent of social inclusion by people with intellectual disability and challenging behaviour. A thematic analysis of the 14 papers identified that social inclusion has been poorly defined and measured, and that the little research that has occurred in respect of people with challenging behaviour has demonstrated their potential to be socially included. Clearer conceptualisation of inclusion, and greater understanding of practices that support social inclusion and system level mechanisms, which ensure goals around inclusion gain prominence in funding and support plans, may address the neglect of this critical quality-of-life domain for people with challenging behaviour.

  19. [Aging and quality of life: challenges and opportunities for people with intellectual disabilities].

    Science.gov (United States)

    Schäper, S; Graumann, S

    2012-10-01

    In the coming years, a growing number of people with an intellectual disability will reach retirement age. In line with the change of paradigms, the leading ideas of participation, inclusion and self-determination have become the principles of the ideological and conceptual framework in social services for people with disabilities. However, in many places convincing concepts and arrangements of support for elderly people with intellectual disabilities are lacking, particularly beyond institutionalized concepts. The research project "Lebensqualität inklusiv(e)" (quality of life included) tries to bridge this gap. On the base of an estimation of the demographic development for this group of people, models of best practice have been documented and evaluated focusing on living conditions and the special requirements for elderly people with intellectual disabilities in order to gather ideas for the development of arrangements of support. The results show that an interdisciplinary cooperation is indispensable.

  20. Nurses' experience of caring for people with intellectual disability and dementia.

    Science.gov (United States)

    Cleary, Josephine; Doody, Owen

    2017-03-01

    To explore nurses' experiences of caring for older people with intellectual disability and dementia. Ageing and dementia prevalence is increasing along with the life expectancy of people with intellectual disability. As a population group, people with intellectual disability have a high prevalence of dementia, which is higher within the subpopulation of Down syndrome. People with intellectual disability live in residential care, community or residential settings, and nurses are required to adapt their practices to meet the changed needs of the individual. A qualitative Husserlian descriptive phenomenological methodology facilitated the researcher to become absorbed in the quintessence of meaning and explore nurses' experience of working with older people with intellectual disability and dementia. Ethical approval was obtained, and data were collected utilising semistructured interviews (n = 11). Interviews were transcribed and analysed using Colaizzi's framework for data analysis. Three key themes were identified: 'knowledge of dementia', 'person-centred care' and 'transitioning within the service'. The study highlights the need for proactive planning, life story books of the patient, and funding to support client and staff. Overall, the study highlights the importance of knowing the person, supporting the individual and recognising presenting behaviours as outside the control of the individual. This article presents the experiences of nurses caring for the older person with intellectual disability and dementia. Transitions are often very difficult for both the person and their peers, and they experience benefit from the efforts of a multidisciplinary team facilitating a person-centred approach. © 2016 John Wiley & Sons Ltd.

  1. Non-verbal communication between Registered Nurses Intellectual Disability and people with an intellectual disability: an exploratory study of the nurse's experiences. Part 1.

    Science.gov (United States)

    Martin, Anne-Marie; Connor-Fenelon, Maureen O'; Lyons, Rosemary

    2012-03-01

    This is the first of two articles presenting the findings of a qualitative study which explored the experiences of Registered Nurses Intellectual Disability (RNIDs) of communicating with people with an intellectual disability who communicate non-verbally. The article reports and critically discusses the findings in the context of the policy and service delivery discourses of person-centredness, inclusion, choice and independence. Arguably, RNIDs are the profession who most frequently encounter people with an intellectual disability and communication impairment. The results suggest that the communication studied is both complicated and multifaceted. An overarching category of 'familiarity/knowing the person' encompasses discrete but related themes and subthemes that explain the process: the RNID knowing the service-user; the RNID/service-user relationship; and the value of experience. People with an intellectual disability, their families and disability services are facing a time of great change, and RNIDs will have a crucial role in supporting this transition.

  2. Attitudes towards people with physical or intellectual disabilities among nursing, social work and medical students.

    Science.gov (United States)

    Kritsotakis, George; Galanis, Petros; Papastefanakis, Emmanouil; Meidani, Flora; Philalithis, Anastas E; Kalokairinou, Athena; Sourtzi, Panayota

    2017-12-01

    To examine and compare undergraduate healthcare students' attitudes towards people with physical or intellectual disabilities in Greece. The experience that people with disabilities have with health care is a complex interaction between their medical condition and the social and physical environment. Attitudes of the nursing and healthcare staff affect the quality of care and people's adaptation to their disability, self-image and rehabilitation outcomes. Descriptive cross-sectional survey. Nursing, Social Work and Medicine students (N = 1007, 79.4% female) attending three universities (Athens, Crete) completed during 2014-2016 two standardised scales regarding physical (ATDP-B) and intellectual disability (CLAS-ID). Descriptive and multivariate logistic regression analyses were performed. Attitudes towards people with physical disabilities in Greece (ATDP-B scores) were poor with scores just above the mid-point. Medical studies and higher knowledge and work with individuals with physical disabilities signified marginally more positive attitudes. Gender and age displayed no associations with attitudes. Regarding intellectual disability (CLAS-ID scores), nursing students had slightly less positive attitudes in "Similarity" but more positive attitudes in "Sheltering" subscales. Previous work and contact was related to more favourable and higher age to less favourable "Similarity" and "Sheltering" attitudes. Males had higher "Exclusion" scores. Those who knew people with intellectual disabilities had less favourable "Empowerment" attitudes. Knowledge was related to more positive attitudes in all four CLAS-ID subscales. Greek health and social care students showed poor attitudes towards people with physical and intellectual disability. When holding unfavourable attitudes, healthcare professionals become less involved with the people they care for and they do not provide nursing care to the best of their abilities. Undergraduate and continuing education, along with

  3. Ageing of people with an intellectual disability: Effective training for frontline workers

    OpenAIRE

    Adrienne McGhee; Pat Dorsett

    2011-01-01

    Abstract While the attainment of late life represents a significant achievement for people with an intellectual disability, increased life expectancy has resulted in growing concerns about the extent to which disability service providers are ready to meet the changing needs of increasing numbers of older people and facilitate their ongoing social inclusion. Training of frontline disability staff is widely accepted as an effective strategy for increasing organisational capacity to contribu...

  4. Joint efforts and shared responsibilities - Health information exchange in primary care for people with intellectual disabilities

    NARCIS (Netherlands)

    Mastebroek, M.

    2017-01-01

    People with intellectual disabilities (ID) have a considerably worse health than people without ID, for a great part related to the quality of healthcare provision and health communication. This research studied health information exchange (HIE) between people with ID, their support network, and

  5. People with mild to moderate intellectual disability talking about their diabetes and how they manage.

    NARCIS (Netherlands)

    Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H. van

    2012-01-01

    Background: The prevalence of diabetes is relatively high in people with intellectual disability (ID). However, little is known about how people with ID experience having diabetes and how they manage the condition. Method: Seventeen people with mild to moderate ID who have diabetes were interviewed.

  6. Does assistive technology contribute to social inclusion for people with intellectual disability? A systematic review protocol.

    Science.gov (United States)

    Owuor, John; Larkan, Fiona; Kayabu, Bonnix; Fitzgerald, Geraldine; Sheaf, Greg; Dinsmore, John; McConkey, Roy; Clarke, Mike; MacLachlan, Malcolm

    2018-02-10

    The aim of this review is to answer the following question: Does assistive technology contribute to social inclusion for people with intellectual disability? Previous research on assistive technology has focused on socioeconomic impacts such as education, employment and access to healthcare by people with intellectual disability. There is a need to consolidate evidence on the interaction between intellectual disability, assistive technology, community living and social inclusion. The review will consider studies from all settings: geographical, socioeconomic and care (institutional and community care), published in English. Studies reported in other languages with abstracts in English will be included if they can be translated using Google Translate, otherwise such studies will be included in the appendix. The review will include both qualitative and quantitative studies. The intervention in this review refers to the use of assistive technology to promote community participation or interpersonal relationships (social inclusion) for people with intellectual disability. The outcomes will be behavioural and social benefits of using assistive technology by people with intellectual disability. Enhanced interpersonal relationships and community participation by people with intellectual disability. Data analysis will be in two phases. The first phase will involve analysis of individual study designs separately. The second phase will be narrative/thematic synthesis of all study groups. The review will not create any ethical or safety concerns. At least one peer-reviewed article in a leading journal such as the BMJ is planned. The findings will also be disseminated through a seminar session involving internal audience at Trinity College Dublin and within the Assistive Technologies for people with Intellectual Disability and Autism research programme. CRD42017065447; Pre-results. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article

  7. Pretreatment for substance-abusing people with intellectual disabilities : Intervening on autonomous motivation for treatment entry

    NARCIS (Netherlands)

    Frielink, N.; Schuengel, C.; Kroon, A.; Embregts, P.J.C.M.

    2015-01-01

    Background Despite a lack of consensus regarding prevalence rates of substance abuse, people with intellectual disabilities (ID) on average use substances slightly less often than their non-disabled peers. However, their use of substances is more often problematic. Avoidance of treatment is a

  8. Pretreatment for substance-abusing people with intellectual disabilities: Intervening on autonomous motivation for treatment entry

    NARCIS (Netherlands)

    Frielink, N.; Schuengel, C.; Kroon, A.; Embregts, P.C.J.M.

    2015-01-01

    Background: Despite a lack of consensus regarding prevalence rates of substance abuse, people with intellectual disabilities (ID) on average use substances slightly less often than their non-disabled peers. However, their use of substances is more often problematic. Avoidance of treatment is a

  9. Family Care of People with Intellectual Disability in Rural China: A Magnified Responsibility

    Science.gov (United States)

    Pan, Lu; Ye, Jingzhong

    2015-01-01

    Background: Welfare for the disabled is becoming an important issue in China and care for people with intellectual disability is challenging because of the inadequacies in formal support and the social service system. Material and Method: Based on ethnographic research in two villages in North China, this paper analyses the dilemmas of family care…

  10. Friendships and Intimate Relationships among People with Intellectual Disabilities: A Thematic Synthesis.

    Science.gov (United States)

    Fulford, Casey; Cobigo, Virginie

    2018-01-01

    The purpose of this thematic synthesis was to review qualitative studies on perspectives of persons with intellectual disabilities regarding friendships and intimate relationships. A literature search was conducted, including studies published between 2004 and 2014, involving participants 14 years of age or older, who had intellectual disabilities, and participated in focus groups or interviews. Eighteen studies were included. Three master themes were identified: (i) How do I know someone is my friend? (ii) How do I know someone is my boyfriend or girlfriend? and (iii) What helps and hinders relationships? Understanding how people with intellectual disabilities describe relationships, and being aware of factors that support and impede relationships, will aid stakeholders in developing training, policies, programmes and services. Knowledge translation of research that focuses on strategies aimed at supporting relationships is crucial to affect change in applied settings and improve quality of life for persons with intellectual disabilities. © 2016 John Wiley & Sons Ltd.

  11. Internet and people with intellectual disability: an approach to caregivers’ concerns, prevention strategies and training needs

    Directory of Open Access Journals (Sweden)

    Esther Chiner

    2017-07-01

    Full Text Available The aim of this study was to explore caregivers’ views about the risks of the Internet for people with intellectual disabilities and their preparation and ability to use prevention strategies to address them. The participants (20 family members and 24 staff members belonged to a non-profit association working with people with developmental and intellectual disabilities and were asked to respond to a questionnaire about Internet safety and risks. Findings show some concerns from caregivers with regard to the use of the Internet by people with intellectual disabilities and suggest that this group is more vulnerable to online risks. Participants use different kinds of strategies to prevent the risks but they have not received any formal training. They think that this training should come from the Administration and other organisations. Some differences were found between family and staff members’ responses. Training programmes for all the groups involved in this process (i.e. people with intellectual disabilities, staff and family members should be designed, implemented and assessed to promote the inclusion of people with intellectual disabilities in the digital arena.

  12. Non-verbal communication between nurses and people with an intellectual disability: a review of the literature.

    Science.gov (United States)

    Martin, Anne-Marie; O'Connor-Fenelon, Maureen; Lyons, Rosemary

    2010-12-01

    This article critically synthesizes current literature regarding communication between nurses and people with an intellectual disability who communicate non-verbally. The unique context of communication between the intellectual disability nurse and people with intellectual disability and the review aims and strategies are outlined. Communication as a concept is explored in depth. Communication between the intellectual disability nurse and the person with an intellectual disability is then comprehensively examined in light of existing literature. Issues including knowledge of the person with intellectual disability, mismatch of communication ability, and knowledge of communication arose as predominant themes. A critical review of the importance of communication in nursing practice follows. The paucity of literature relating to intellectual disability nursing and non-verbal communication clearly indicates a need for research.

  13. Crime and victimisation in people with intellectual disability: a case linkage study.

    Science.gov (United States)

    Fogden, Billy C; Thomas, Stuart D M; Daffern, Michael; Ogloff, James R P

    2016-05-28

    Studies have suggested that people with intellectual disability are disproportionately involved in crime both as perpetrators and victims. A case linkage design used three Australian contact-level databases, from disability services, public mental health services and police records. Rates of contact, and official records of victimisation and criminal charges were compared to those in a community sample without intellectual disability. Although people with intellectual disability were significantly less likely to have an official record of victimisation and offending overall, their rates of violent and sexual victimisation and offending were significantly higher. The presence of comorbid mental illness considerably increased the likelihood of victimisation and offending; several sex differences were also noted. People with intellectual disability are at increased risk for both violent and sexual victimisation and offending. The presence of comorbid mental illness aggravates the risk of offending and victimisation. Future research should focus on a more nuanced exploration of the risks associated with intellectual disability and specific mental disorders and related indices of complexity.

  14. Music for All: Including young people with intellectual disability in a university environment.

    Science.gov (United States)

    Rickson, Daphne; Warren, Penny

    2017-01-01

    We investigated a continuing education course in creative music making, initiated to promote the inclusion of young people with intellectual disability in a university setting. Despite organizers' attempts to foster diversity within the student cohort, enrolments were almost exclusively from students who had intellectual disability. Being in the university environment, and in a place of higher learning, seemed to be valued by some. However, students' main focus was on group musicking in a dedicated music room rather than interacting with the wider university community. Those who did not identify as disabled believed it was important to continue to address the barriers to wider inclusion. While acknowledging the risks around mediating the social interactions of young people with intellectual disability, we argue that future courses should include activities specifically designed to bring them to classes with typical students and to the wider activities of the university.

  15. Safety First! The topic of safety in reversed integration of people with intellectual disabilities.

    NARCIS (Netherlands)

    Venema, Eleonora; Vlaskamp, Carla; Otten, Sabine

    2017-01-01

    Background: Physical integration is believed to be a precondition for social integration. One might expect that in so-called reversed integration, where people without intellectual disabilities (ID) actively choose to live next to people with ID, conditions for physical integration are more optimal,

  16. Job Satisfaction of People with Intellectual Disability: Associations with Job Characteristics and Personality

    Science.gov (United States)

    Akkerman, Alma; Kef, Sabina; Meininger, Herman P.

    2018-01-01

    To obtain an understanding of factors associated with job satisfaction of people with intellectual disability (ID), this study investigates the associations of job satisfaction with job characteristics (i.e., job demands, job resources) and personality, using the job demands-resources model. Data were gathered from 117 people and their employment…

  17. The Human Rights Context for Ethical Requirements for Involving People with Intellectual Disability in Medical Research

    Science.gov (United States)

    Iacono, T.; Carling-Jenkins, R.

    2012-01-01

    Background: The history of ethical guidelines addresses protection of human rights in the face of violations. Examples of such violations in research involving people with intellectual disabilities (ID) abound. We explore this history in an effort to understand the apparently stringent criteria for the inclusion of people with ID in research, and…

  18. Mental Health Problems in Young People with Intellectual Disabilities: The Impact on Parents

    Science.gov (United States)

    Faust, Hannah; Scior, Katrina

    2008-01-01

    Background: Young people with intellectual disabilities seem to be at increased risk of developing mental health problems. The present study set out to examine the impact such difficulties can have on parents. Method: Semi-structured in-depth interviews were carried out with 13 parents and one adult sibling of 11 young people with intellectual…

  19. The Housing and Support Needs of People with an Intellectual Disability into Older Age

    Science.gov (United States)

    Shaw, K.; Cartwright, C.; Craig, J.

    2011-01-01

    Background: People with intellectual disabilities (IDs) are growing older as a population cohort. Many live at home with family members who are their carers but who are also becoming older and less able to provide care. The housing and support preferences of people with IDs and their carers into older age are poorly characterised in the…

  20. Schizophrenia-Spectrum Psychoses in People With and Without Intellectual Disability

    Science.gov (United States)

    Bouras, N.; Martin, G.; Leese, M.; Vanstraelen, M.; Holt, G.; Thomas, C.; Hindler, C.; Boardman, J.

    2004-01-01

    Although there is an increased risk of schizophrenia-spectrum psychoses (SSP) in people with intellectual disability (ID), there is a paucity of research evidence into clinical presentation of the disorder in comparison with research into SSP in people without ID. Aims The aims of the study were to compare clinical, functional, and social factors…

  1. Face Recognition and Description Abilities in People with Mild Intellectual Disabilities

    Science.gov (United States)

    Gawrylowicz, Julie; Gabbert, Fiona; Carson, Derek; Lindsay, William R.; Hancock, Peter J. B.

    2013-01-01

    Background: People with intellectual disabilities (ID) are as likely as the general population to find themselves in the situation of having to identify and/or describe a perpetrator's face to the police. However, limited verbal and memory abilities in people with ID might prevent them to engage in standard police procedures. Method: Two…

  2. Attuning: A Communication Process between People with Severe and Profound Intellectual Disability and Their Interaction Partners

    Science.gov (United States)

    Griffiths, Colin; Smith, Martine

    2016-01-01

    Background: People with severe and profound intellectual disability typically demonstrate a limited ability to communicate effectively. Most of their communications are non-verbal, often idiosyncratic and ambiguous. This article aims to identify the process that regulates communications of this group of people with others and to describe the…

  3. Inclusion in political and public life: the experiences of people with intellectual disability on government disability advisory bodies in Australia.

    Science.gov (United States)

    Frawley, Patsie; Bigby, Christine

    2011-03-01

    Civil and political participation lies at the core of citizenship. Increasingly, people with intellectual disability are members of disability advisory bodies. This study investigated the political orientations of advisory body members with intellectual disability, their participatory experiences, and the types of support they received. The 9 people with intellectual disability who in 2005 were members of disability advisory bodies at a state, national, and Victorian local government level were interviewed, together with 12 other members or secretariat staff of these bodies. Observations were also conducted of advisory body meetings. The political perspective of members with intellectual disability varied, but all had a background in self-advocacy. They found the work hard but rewarding and encountered both practical and intangible obstacles to participation. Members received varying types of practical support, but a supportive collegial milieu was characteristic among members who felt most confident about their participation. The milieu, structures, and processes of advisory bodies must all be adjusted to accommodate people with intellectual disability if they are to participate meaningfully.

  4. Attuning: A Communication Process between People with Severe and Profound Intellectual Disability and Their Interaction Partners.

    Science.gov (United States)

    Griffiths, Colin; Smith, Martine

    2016-03-01

    People with severe and profound intellectual disability typically demonstrate a limited ability to communicate effectively. Most of their communications are non-verbal, often idiosyncratic and ambiguous. This article aims to identify the process that regulates communications of this group of people with others and to describe the methodological approach that was used to achieve this. In this qualitative study, two dyads consisting of a person with severe or profound intellectual and multiple disability and a teacher or carer were filmed as they engaged in school-based activities. Two 1-hour videotapes were transcribed and analysed using grounded theory. Attuning was identified within the theory proposed here as a central process that calibrates and regulates communication. Attuning is conceptualized as a bidirectional, dyadic communication process. Understanding this process may support more effective communication between people with severe or profound intellectual and multiple disability and their interaction partners. © 2015 John Wiley & Sons Ltd.

  5. Intellectual disability in young people in custody in New South Wales, Australia - prevalence and markers.

    Science.gov (United States)

    Haysom, L; Indig, D; Moore, E; Gaskin, C

    2014-11-01

    Intellectual disability (ID) is known to be more common in incarcerated groups, especially incarcerated youth. Aboriginal young people have higher rates of ID, and make up half of all youth in juvenile custody in New South Wales (NSW), Australia. We aimed to describe the prevalence of possible ID and borderline intellectual functioning (BIF) in young people in NSW custody, and to describe the association between possible ID and Aboriginality after adjusting for the inequalities in social disadvantage. Baseline study of all youth in NSW Custodial Centres between August and October 2009, with 18-month follow-up. Using Wechsler Intelligence Scale for Children - Fourth Edition (WISC-IV) and Wechsler Adult Intelligence Scale - Fourth Edition (WAIS-IV) cognitive assessments, possible ID was defined as Extremely Low Intellectual Quotient range (Full Scale Intellectual Quotient, FSIQ intellectual functioning (by IQ assessment), and 14% had an IQ in the extremely low range (FSIQ intellectual impairment of those incarcerated from a young age. Aboriginal young people with psychosis are also at high risk of cognitive impairments that might indicate a possible co-morbid ID, and these patients should be diverted at court into community assessment services, rather than incarcerated. These results highlight a need for better and earlier identification of young people (particularly Aboriginal youth) at risk of ID and other co-morbidities in the juvenile justice system. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

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

    Science.gov (United States)

    Northway, Ruth; Howarth, Joyce; Evans, Lynne

    2015-02-01

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

  7. The figure of the helper advisor in cases of sexual abuse against people with intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Almudena MARTORELL CAFRANGA

    2017-09-01

    Full Text Available In this paper we analyse the main barriers that people with intellectual disabilities who have suffered sexual abuse have to face when they access the Justice system. Regarding these barriers, the Victim Support Unit for People with Intellectual Disabilities of the Fundación Carmen Pardo-Valcarce proposes the inclusion in the judicial process of a helper advisor. The entry into force in 2015 of the Law 4/2015, in 27 April, the Statute of the crime victim represents an exemplary opportunity to ensure the incorporation of support proposals involving the insertion of the helper advisor in the judicial process in cases where the victim is a person with intellectual disabilities. In this paper we analyse the impact of the helper advisor, with particular emphasis on cases that have been dismissed under instruction.

  8. Examining relationships between staff attributions of soundscapes and core affect in people with severe or profound intellectual and visual disabilities

    NARCIS (Netherlands)

    van den Bosch, Kirsten A.; Vlaskamp, Carla; Andringa, Tjeerd C.; Post, Wendy J.; Ruijssenaars, Wied A.J.J.M.

    Background: People with profound intellectual disabilities experience a high prevalence of visual disabilities, making them more dependent on sound. However, research addressing the influence of the auditory environment is scarce. Method: Observations of the auditory environments (soundscapes) and

  9. Outcomes and Experiences of an Adapted Dialectic Behaviour Therapy Skills Training Group for People with Intellectual Disabilities

    Science.gov (United States)

    Crossland, Tom; Hewitt, Olivia; Walden, Sarah

    2017-01-01

    Background: A growing body of evidence supports the use of Dialectic Behaviour Therapy with people with an intellectual disability. Various adaptation have been used in studies exploring the efficacy of this intervention. Method: A Dialectic Behaviour Therapy DBT skills training group was attended by people with an intellectual disability and…

  10. Social Connections for Older People with Intellectual Disability in Ireland: Results from Wave One of IDS-TILDA

    Science.gov (United States)

    McCausland, Darren; McCallion, Philip; Cleary, Eimear; McCarron, Mary

    2016-01-01

    Background: The literature on influences of community versus congregated settings raises questions about how social inclusion can be optimised for people with intellectual disability. This study examines social contacts for older people with intellectual disability in Ireland, examining differences in social connection for adults with intellectual…

  11. Issues Concerning Self-Report Data and Population-Based Data Sets Involving People with Intellectual Disabilities

    Science.gov (United States)

    Emerson, Eric; Felce, David; Stancliffe, Roger J.

    2013-01-01

    This article examines two methodological issues regarding ways of obtaining and analyzing outcome data for people with intellectual disabilities: (a) self-report and proxy-report data and (b) analysis of population-based data sets. Some people with intellectual disabilities have difficulties with self-reporting due to problems of understanding and…

  12. Employed Carers' Empathy towards People with Intellectual Disabilities: The Development of a New Measure and Some Initial Theory

    Science.gov (United States)

    Collins, Kirsten; Gratton, Caroline; Heneage, Celia; Dagnan, Dave

    2017-01-01

    Background: This study aimed to develop a self-report measure of paid caregivers' empathy towards people with intellectual disabilities. Materials and Methods: Following questionnaire development, 194 staff working in services for people with intellectual disabilities completed self-report questionnaires, including the new empathy measure. The…

  13. Rights Discourses in Relation to Education of People with Intellectual Disability: Towards an Ethics of Care that Enables Participation

    Science.gov (United States)

    Mckenzie, Judith Anne; Macleod, Catriona Ida

    2012-01-01

    In this paper we argue that human rights approaches for intellectually disabled people have failed to recognise the complexity of rights claims made by and on behalf of this group. Drawing on a research project into discourses of education for intellectually disabled people in the Eastern Cape, South Africa we discern three rights discourses;…

  14. "I'm Still Here": Exploring What Matters to People with Intellectual Disability during Advance Care Planning

    Science.gov (United States)

    McKenzie, Nicola; Mirfin-Veitch, Brigit; Conder, Jennifer; Brandford, Sharon

    2017-01-01

    Background: This study sought to identify, from the perspective of people with intellectual disabilities and life limiting conditions, the factors that strengthened and inhibited their Advance Care Planning. Methods: This in depth qualitative study explored the experiences of four people with intellectual disability and life limiting conditions,…

  15. Significant Improvement in Sleep in People with Intellectual Disabilities Living in Residential Settings by Non-Pharmaceutical Interventions

    Science.gov (United States)

    Hylkema, T.; Vlaskamp, C.

    2009-01-01

    Background: Although about 15 to 50 percent of people with intellectual disabilities (ID) living in residential settings suffer from sleep problems, scant attention is paid to these problems. Most available studies focus on pharmaceutical solutions. In this study we focus on improving sleep in people with intellectual disabilities living in…

  16. Comparison of anxiety as reported by older people with intellectual disabilities and by older people with normal intelligence

    NARCIS (Netherlands)

    Hermans, H.; Beekman, A.T.F.; Evenhuis, H.M.

    2014-01-01

    Objectives Older people with intellectual disabilities (ID) may experience more and different symptoms of anxiety than older people with normal intelligence. Study questions: (1) Is the reported severity of anxiety in this group similar to that in the general older population; (2) Are specific

  17. General Nutrition Knowledge among Carers at Group Homes for People with Intellectual Disability

    Science.gov (United States)

    Hamzaid, N. H.; Flood, V. M.; Prvan, T.; O'Connor, H. T.

    2018-01-01

    Background: Good nutrition knowledge among carers of people with intellectual disability (ID) living in group homes is essential as they have a primary role in food provision for residents. Research on the nutrition knowledge of carers is limited. Method: This cross-sectional study assessed the level of general nutrition knowledge in a convenience…

  18. "Helicobacter Pylori" Infection in Five Inpatient Units for People with Intellectual Disability and Psychiatric Disorder

    Science.gov (United States)

    Clarke, David; Vemuri, Murali; Gunatilake, Deepthi; Tewari, Sidhartha

    2008-01-01

    Background: A high prevalence of "Helicobacter pylori" infection has been reported among people with intellectual disability, especially those residing in hospital and similar settings. Surveys of inpatients have found unusually high rates of gastrointestinal malignancy, to which "H. pylori" infection predisposes. Methods: "Helicobacter pylori"…

  19. The Role of Sound in Residential Facilities for People With Profound Intellectual and Multiple Disabilities

    NARCIS (Netherlands)

    van den Bosch, Kirsten A.; Andringa, Tjeerd C.; Baskent, Deniz; Vlaskamp, Carla

    2016-01-01

    Attention to the auditory environment of people with profound intellectual and multiple disabilities (PIMD) is limited, both in research and practice. As there is a dynamic interplay between the quality of the auditory environment and well-being, a study was undertaken to test the validity of the

  20. Failure to Detect Deaf-Blindness in a Population of People with Intellectual Disability

    Science.gov (United States)

    Fellinger, J.; Holzinger, D.; Dirmhirn, A.; van Dijk, J.; Goldberg, D.

    2009-01-01

    Background: Early identification of deaf-blindness is essential to ensure appropriate management. Previous studies indicate that deaf-blindness is often missed. We aim to discover the extent to which deaf-blindness in people with intellectual disability (ID) is undiagnosed. Method: A survey was made of the 253 residents of an institute offering…

  1. Food Choice by People with Intellectual Disabilities at Day Centres: A Qualitative Study

    Science.gov (United States)

    Cartwright, Luke; Reid, Marie; Hammersley, Richard; Blackburn, Chrissie; Glover, Lesley

    2015-01-01

    People with intellectual disabilities experience a range of health inequalities. It is important to investigate possible contributory factors that may lead to these inequalities. This qualitative study identified some difficulties for healthy eating in day centres. (1) Service users and their family carers were aware of healthy food choices but…

  2. Developing Measures of Job Performance for Support Staff in Housing Services for People with Intellectual Disabilities

    Science.gov (United States)

    Hatton, Chris; Wigham, Sarah; Craig, Jaime

    2009-01-01

    Background: There is an absence of research concerning the assessment of housing support worker job performance, particularly in the development of job performance measures that reflect the priorities of people with intellectual disabilities and their families. Method: A worker-oriented job analysis method was used to develop four short job…

  3. Medicaid-Covered Alcohol and Drug Treatment Use among People with Intellectual Disabilities: Evidence of Disparities

    Science.gov (United States)

    Slayter, Elspeth

    2010-01-01

    For some, community inclusion facilitates access to alcohol and drugs and, therefore, the potential for developing substance abuse disorders. However, little is known about substance abuse treatment use among people with intellectual disabilities. Using standardized performance measures, substance abuse treatment utilization was examined for…

  4. 76 FR 31341 - President's Committee for People With Intellectual Disabilities; Notice of Correction of Room for...

    Science.gov (United States)

    2011-05-31

    ... Genevieve Swift, PCPID Executive Administrative Assistant, via e-mail at Edith.Swift@acf.hhs.gov , or via... contact Laverdia Taylor Roach, Director, President's Committee for People with Intellectual Disabilities... and universally designed technologies. Dated: May 24, 2011. Laverdia Taylor Roach, Director, PCPID...

  5. 76 FR 38658 - President's Committee for People With Intellectual Disabilities; Notice of Committee Meeting via...

    Science.gov (United States)

    2011-07-01

    ...) should notify Genevieve Swift, PCPID Executive Administrative Assistant, at Edith.Swift@acf.hhs.gov , or... contact Laverdia Taylor Roach, President's Committee for People with Intellectual Disabilities, The... universally designed technologies. Dated: June 27, 2011. Laverdia Taylor Roach, PCPID. [FR Doc. 2011-16604...

  6. Feasibility of Quantitative Ultrasound Measurement of the Heel Bone in People with Intellectual Disabilities

    Science.gov (United States)

    Mergler, S.; Lobker, B.; Evenhuis, H. M.; Penning, C.

    2010-01-01

    Low bone mineral density (BMD) and fractures are common in people with intellectual disabilities (ID). Reduced mobility in case of motor impairment and the use of anti-epileptic drugs contribute to the development of low BMD. Quantitative ultrasound (QUS) measurement of the heel bone is a non-invasive and radiation-free method for measuring bone…

  7. A Preliminary Investigation of the Suitability of Aquatics for People with Severe and Profound Intellectual Disabilities

    Science.gov (United States)

    Aherne, Cian; Coughlan, Barry

    2017-01-01

    Background: Aquatics is an under-researched but possibly appropriate form of activity for people with severe to profound intellectual disabilities (SPIDs). Aim: The current pilot study investigates the suitability of an aquatics programme for service users with SPIDs. Method: Four service users with SPID completed an 8-12-session aquatics…

  8. Healthy Lifestyle Behaviours for People with Intellectual Disabilities: An Exploration of Organizational Barriers and Enablers

    Science.gov (United States)

    O'Leary, Lisa; Taggart, Laurence; Cousins, Wendy

    2018-01-01

    Background: The health-related behaviours of people with intellectual disabilities may be determined by organisational influences. This innovative study aimed to explore managers' and staffs' perspectives on organisational influences on the promotion of healthy behaviours for this population. Method: A qualitative methodology was employed. Four…

  9. Cancer Prevention and Health Promotion for People with Intellectual Disabilities: An Exploratory Study of Staff Knowledge

    Science.gov (United States)

    Hanna, L. M.; Taggart, L.; Cousins, W.

    2011-01-01

    Background: As people with intellectual disabilities (ID) are living longer, their chances of developing cancer also increases. However, recognising the early signs and symptoms of cancer in a population with cognitive impairment and communication difficulties poses difficulties for both family carers and professional care staff. Engagement in…

  10. Prevalence of Dysphagia in People with Intellectual Disability: A Systematic Review

    Science.gov (United States)

    Robertson, Janet; Chadwick, Darren; Baines, Susannah; Emerson, Eric; Hatton, Chris

    2017-01-01

    Dysphagia (feeding and swallowing disorder) is associated with serious health complications and psychosocial sequelae. This review summarizes international research relating to the prevalence of dysphagia in people with intellectual disability. Studies published from 1990 to July 2016 were identified using Medline, Cinahl, PsycINFO, Web of…

  11. Family Voices: Life for Family Carers of People with Intellectual Disabilities in Ireland

    Science.gov (United States)

    Chadwick, Darren D.; Mannan, Hasheem; Garcia Iriarte, Edurne; McConkey, Roy; O'Brien, Patricia; Finlay, Frieda; Lawlor, Anne; Harrington, Gerry

    2013-01-01

    Background: Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers. Materials and Method: This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings…

  12. Hospital Admissions for Physical Health Conditions for People with Intellectual Disabilities: Systematic Review

    Science.gov (United States)

    Dunn, Kirsty; Hughes-McCormack, Laura; Cooper, Sally-Ann

    2018-01-01

    Background: People with intellectual disabilities may have inequalities in hospital admissions compared with the general population. The present authors aimed to investigate admissions for physical health conditions in this population. Methods: The present authors conducted a systematic review, searching six databases using terms on intellectual…

  13. Experiencing Rights within Positive, Person-Centred Support Networks of People with Intellectual Disability in Australia

    Science.gov (United States)

    Hillman, A.; Donelly, M.; Whitaker, L.; Dew, A.; Stancliffe, R. J.; Knox, M.; Shelley, K.; Parmenter, T. R.

    2012-01-01

    Background: This research describes issues related to human rights as they arose within the everyday lives of people in nine personal support networks that included adult Australians with an intellectual disability (ID). Method: The research was part of a wider 3-year ethnographic study of nine personal support networks. A major criterion for…

  14. People with Intellectual Disabilities in Out-of-Area Specialist Hospitals: What Do Families Think?

    Science.gov (United States)

    Bonell, Simon; Ali, Afia; Hall, Ian; Chinn, Deborah; Patkas, Ioannis

    2011-01-01

    Background: Little has been published regarding the views of family members of people with intellectual disabilities who are being cared for in out-of-area psychiatric hospitals. This study explores this area with specific reference to whether culturally appropriate services were being provided. Materials and Methods: Sixteen family members were…

  15. The Experiences of High Intensity Therapists Delivering Cognitive Behavioural Therapy to People with Intellectual Disabilities

    Science.gov (United States)

    Marwood, Hayley; Chinn, Deborah; Gannon, Kenneth; Scior, Katrina

    2018-01-01

    Background: People with intellectual disabilities (ID) should be able to access the Improving Access to Psychological Therapies (IAPT) programme, currently a main provider of mainstream mental health services in England. IAPT offer cognitive behavioural therapy (CBT) to individuals experiencing mental health problems, although its effectiveness…

  16. Workplace Culture Analysis where People with Intellectual Disabilities Work: A Case Study Approach

    Science.gov (United States)

    Fillary, Rose; Pernice, Regina

    2005-01-01

    Background: Research evidence suggests that investigation of workplace culture assists in enhancing social inclusion of and job retention by people with intellectual disability. Method: This research explored the potential of using Hagner's (2000) "Workplace Culture Survey" to identify inclusive characteristics of eight New Zealand…

  17. End-of-life decisions: an important theme in the care for people with intellectual disabilities.

    NARCIS (Netherlands)

    Wagemans, A.; Schrojenstein Lantman, H.M.J. van; Tuffrey-Wijne, I.; Widdershoven, G.; Curfs, L.M.G.

    2010-01-01

    BACKGROUND: While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing

  18. Characteristics of People Providing Family Placements to Adult Persons with Intellectual Disabilities

    Science.gov (United States)

    McConkey, Roy; McConaghie, Jayne; Roberts, Paul; King, Diana

    2005-01-01

    The success of family placement schemes depends largely on the recruitment of suitable people who are willing to offer placements in their own home yet little research has been undertaken of their characteristics and the reasons for their involvement. Thirty providers of family based placements to adult persons with intellectual disabilities were…

  19. Postural Care for People with Intellectual Disabilities and Severely Impaired Motor Function: A Scoping Review

    Science.gov (United States)

    Robertson, Janet; Baines, Susannah; Emerson, Eric; Hatton, Chris

    2018-01-01

    Background: Poor postural care can have severe and life-threatening complications. This scoping review aims to map and summarize existing evidence regarding postural care for people with intellectual disabilities and severely impaired motor function. Method: Studies were identified via electronic database searches (MEDLINE, CINAHL, PsycINFO and…

  20. Towards the Prevention of Behavioural and Psychiatric Disorders in People with Intellectual Disabilities

    Science.gov (United States)

    Allen, David; Langthorne, Paul; Tonge, Bruce; Emerson, Eric; McGill, Peter; Fletcher, Robert; Dosen, Anton; Kennedy, Craig

    2013-01-01

    Intervention for behavioural and psychiatric disorders in people with intellectual disabilities often only takes place once these conditions are well established and more resistant to change. As an alternative, this paper promotes a public health prevention model and maps out opportunities for intervention at primary, secondary and tertiary…

  1. Quality of Life and Quality of Support for People with Severe Intellectual Disability and Complex Needs

    Science.gov (United States)

    Beadle-Brown, J.; Leigh, J.; Whelton, B.; Richardson, L.; Beecham, J.; Baumker, T.; Bradshaw, J.

    2016-01-01

    Background: People with severe and profound intellectual disabilities often spend substantial time isolated and disengaged. The nature and quality of the support appears to be important in determining quality of life. Methods: Structured observations and staff questionnaires were used to explore the quality of life and quality of support for 110…

  2. Perceptions and expectations of regular support meetings between staff and people with an intellectual disability

    NARCIS (Netherlands)

    Reuzel, E.A.A.; Embregts, P.J.C.M.; Bosman, A.; van de Nieuwenhuizen, M.; Jahoda, A.

    2017-01-01

    Background Client-centred models of care emphasise the importance of collaborative working between staff and clients with an intellectual disability (ID). How people with an ID perceive the nature of their engagement with staff is relatively unknown. This study investigated the perceptions of staff

  3. People with Intellectual Disabilities at the End of Their Lives: The Case for Specialist Care?

    Science.gov (United States)

    Forrester-Jones, Rachel; Beecham, Jennifer K.; Barnoux, Magali; Oliver, David; Couch, Elyse; Bates, Claire

    2017-01-01

    Background: People with intellectual disabilities have a shorter life expectancy, but healthcare improvements mean that they are beginning to live longer, with associated health difficulties. This means that there is an urgent need to focus research on ageing as well as end-of-life care. This study aimed to explore a specialist intellectual…

  4. The Close Relationships of People with Intellectual Disabilities: A Qualitative Study

    Science.gov (United States)

    Sullivan, Faye; Bowden, Keith; McKenzie, Karen; Quayle, Ethel

    2016-01-01

    Background: Positive interpersonal relationships have been found to enhance an individual's quality of life. However, people with intellectual disabilities (PWID) often have restricted social networks, and little is known about their views on close social relationships. The study aimed to explore how this group perceives and experiences close…

  5. Quality of Diagnosis and Treatment Plans After Using the 'Diagnostic Guideline for Anxiety and Challenging Behaviours' in People with Intellectual Disabilities: A Comparative Multiple Case Study Design

    NARCIS (Netherlands)

    Pruijssers, A.; Meijel, B. van; Maaskant, M.; Keeman, N.; Achterberg, T. van

    2016-01-01

    BACKGROUND: People with intellectual disabilities often have a multitude of concurrent problems due to the combination of cognitive impairments, psychiatric disorders (particularly anxiety) and related challenging behaviours. Diagnoses in people with intellectual disabilities are complicated. This

  6. Prevalence of mental illness, intellectual disability, and developmental disability among homeless people in Nagoya, Japan: A case series study.

    Science.gov (United States)

    Nishio, Akihiro; Yamamoto, Mayumi; Ueki, Hirofumi; Watanabe, Takahiro; Matsuura, Kenshin; Tamura, Osamu; Uehara, Ryosuke; Shioiri, Toshiki

    2015-09-01

    While it has been reported that the prevalence of mental illness is higher in homeless people than in the national population, few studies have investigated the prevalence of intellectual and developmental disability among the homeless. In this study, we conducted a survey to comprehensively assess these mental problems among homeless people in Nagoya, Japan. The subjects were 18 homeless men. Mental illness was diagnosed with semi-structured interviews conducted by psychiatrists. We used the Wechsler Adult Intelligence Scale III to diagnose intellectual disability. Discrepancies between Wechsler Adult Intelligence Scale III subtest scores were used as criteria for developmental disability. Eleven of the 18 participants were diagnosed with mental illness: six with mood disorder, two with psychotic disorder, and six with alcohol problems. The mean IQ of all subjects was 83.4 ± 27.4. The 95% confidence interval (CI) was 96.2-69.1. Seven participants were found to have intellectual disability. Three men showed discrepancies of more than 10 between subtest scores, and all of them were diagnosed with a mental illness. We divided the participants into four groups: those with mental illness only; those with intellectual disability only; those with both problems; and those without diagnosis. The men with intellectual disability only were significantly younger and had been homeless since a younger age than the other groups. Participants diagnosed with a mental illness had been homeless for longer than those without mental health problems. Although the sample size was limited, this study revealed the high prevalence of mental illness and intellectual disability, 61% (95%CI, 35-83%) and 39% (95%CI, 17-64%), respectively, in homeless people in Nagoya, Japan. © 2014 The Authors. Psychiatry and Clinical Neurosciences © 2014 Japanese Society of Psychiatry and Neurology.

  7. Evaluating the characteristics of the grieving process in people with intellectual disability.

    Science.gov (United States)

    Alcedo Rodríguez, M Ángeles; Cristóbal Fernández, Leticia; Gómez Sánchez, Laura E; Arias González, Víctor B

    2018-04-23

    The aim of this study was to examine the characteristics associated with the grieving process among a population with intellectual disability and the influence of particular variables. The sample was composed of 380 participants with intellectual disability, on whose behalf 149 professionals completed a 20-item questionnaire with four Likert-type answer options, developed to evaluate the grieving process: Inventory of Grief and Coping Strategies in Intellectual Disability (IGCS-ID). The IGCS-ID shows adequate levels of reliability. It covers three dimensions: understanding of the concept of death, coping with the loss and post-bereavement reactions. The level of intellectual disability, the time elapsed since the loss and the residential setting gave rise to significant differences in the three dimensions based on the participants. An assessment of the grieving process would help to put in place effective resources to help people with intellectual disability overcome the loss and cope with the changes that it brings. © 2018 John Wiley & Sons Ltd.

  8. Informal social networks of people with profound intellectual and multiple disabilities : Relationship with age, communicative abilities and current living arrangements

    NARCIS (Netherlands)

    Kamstra, A.; van der Putten, A.A.J.; Post, W.J.; Vlaskamp, C.

    2015-01-01

    BACKGROUND: People with profound intellectual and multiple disabilities (PIMD) have limited informal social contacts. Research to determine the factors which can positively influence establishing sound informal social contacts is required. MATERIALS AND METHODS: Regression analysis for 200 people

  9. Out of sight, out of mind? The inclusion and identification of people with intellectual disability in public health research.

    Science.gov (United States)

    Brooker, Katie; van Dooren, Kate; Tseng, Chih-Han; McPherson, Lyn; Lennox, Nick; Ware, Robert

    2015-07-01

    Adults with intellectual disability experience substantial health inequities. Public health research aiming to improve the lives of this population group is needed. We sought to investigate the extent to which a sample of international public health research includes and identifies people with intellectual disability. In this systematic review, we examined a select number of public health journals to determine (1) how often people with intellectual disability are explicitly included in randomised controlled trials (RCTs) and cohort studies and (2) how the presence of intellectual disability is identified and reported. Among eligible articles in these selected public health journals, it was found that cohort studies passively exclude people with intellectual disability, while RCTs actively exclude this population. Most general population articles that explicitly identified people with intellectual disability did so through self-report or proxy report and databases. A more extensive and adequate evidence base relating to the health of this overlooked population group is needed. A useful first step would be for researchers specialising in intellectual disability to identify how we can best assist mainstream researchers to include and identify people with intellectual disability in their population-level studies. © Royal Society for Public Health 2014.

  10. Public attitudes toward people with intellectual disabilities after viewing Olympic or Paralympic performance.

    Science.gov (United States)

    Ferrara, Kate; Burns, Jan; Mills, Hayley

    2015-01-01

    Despite some changes to the way that people with intellectual disabilities (ID) are viewed in society, negative attitudes prevail. One of the aspirations of the 2012 Paralympic games was to influence the public's attitudes toward people with disabilities. The aim of this study was to investigate whether stimuli depicting people with ID performing at Paralympic level of competition change attitudes toward ID. A mixed randomized comparison design was employed comparing 2 groups: those who viewed Paralympic-level ID sport footage and information and those who viewed Olympic footage and information. One hundred fourteen students, mean age 25 yr, were administered measures of implicit (subconscious) attitudes toward disability and explicit (belief-based) attitudes toward ID. Implicit attitudes significantly changed in a positive direction for both groups. The findings provide evidence that both Paralympic (ID) and Olympic media coverage may have at least a short-term effect on attitudes toward people with disabilities.

  11. Mortality of People with Intellectual and Developmental Disabilities from Select US State Disability Service Systems and Medical Claims Data

    Science.gov (United States)

    Lauer, Emily; McCallion, Philip

    2015-01-01

    Background: Monitoring population trends including mortality within subgroups such as people with intellectual and developmental disabilities and between countries provides crucial information about the population's health and insights into underlying health concerns and the need for and effectiveness of public health efforts. Methods: Data from…

  12. Dementia care mapping to support staff in the care of people with intellectual disability and dementia: a feasibility study.

    Science.gov (United States)

    Schaap, Feija D; Fokkens, Andrea S; Dijkstra, Geke J; Reijneveld, Sijmen A; Finnema, Evelyn J

    2018-04-24

    The number of people with intellectual disability and dementia increases; this combination causes behavioural changes. Dementia Care Mapping (DCM) supports staff in dementia care in nursing homes and may be useful in intellectual disability-care. This qualitative study examines the feasibility of DCM for older people with intellectual disability and dementia. The present authors obtained data in focus groups and interviews with professional users and analysed using a framework for feasibility studies. With experts in dementia and intellectual disability researches, the present authors determined the overall feasibility. DCM was found to be feasible in intellectual disability-care, regarding five domains of feasibility. Staff reported DCM to be useful and valuable and addresses to their demand for skills and knowledge. All professional users found DCM feasible in intellectual disability-care, which was confirmed by experts. DCM is feasible in intellectual disability-care. When fully tailored to intellectual disability-care, DCM is useful and provides opportunities to assess its effectiveness. © 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.

  13. The Experiences of Staff Who Support People with Intellectual Disability on Issues about Death, Dying and Bereavement: A Metasynthesis

    Science.gov (United States)

    Lord, Ailsa J.; Field, Stephen; Smith, Ian C.

    2017-01-01

    Background: Historically, people with intellectual disabilities have tended to be excluded from knowing about death, dying and bereavement. Staff in intellectual disability services can play a valuable role in improving understanding of these issues in those they support. This qualitative metasynthesis aimed to understand the experiences of staff…

  14. Future Need of Ageing People with an Intellectual Disability in the Republic of Ireland: Lessons Learned from the Literature

    Science.gov (United States)

    Doody, Catriona M.; Markey, Kathleen; Doody, Owen

    2013-01-01

    People with an intellectual disability are living longer, and the numbers continue to rise. Ireland has and is seeing a dramatic change in the age pro?le of clients and the support services they require. While Ireland had speci?cally trained nurses in intellectual disability, they predominately work in residential settings. This can be seen as…

  15. Dementia care mapping to support staff in the care of people with intellectual disability and dementia: a feasibility study

    NARCIS (Netherlands)

    Schaap, Feija; Dijkstra, Geke; Fokkens, Andrea; Reijneveld, Sijmen; Finnema, Evelyn

    2018-01-01

    Background: The number of people with intellectual disability and dementia in-creases; this combination causes behavioural changes. Dementia Care Mapping (DCM) supports staff in dementia care in nursing homes and may be useful in intel-lectual disability-care. This qualitative study examines the

  16. Symbol Labelling Improves Advantageous Decision-Making on the Iowa Gambling Task in People with Intellectual Disabilities

    Science.gov (United States)

    Dymond, Simon; Bailey, Rebecca; Willner, Paul; Parry, Rhonwen

    2010-01-01

    Individuals with intellectual and developmental disabilities often have difficulties foregoing short-term loss for long-term gain. The Iowa Gambling Task (IGT) has been extensively adopted as a laboratory measure of this ability. In the present study, we undertook the first investigation with people with intellectual disabilities using a…

  17. Exploring the Development of Existing Sex Education Programmes for People with Intellectual Disabilities: An Intervention Mapping Approach

    Science.gov (United States)

    Schaafsma, Dilana; Stoffelen, Joke M. T.; Kok, Gerjo; Curfs, Leopold M. G.

    2013-01-01

    Background: People with intellectual disabilities face barriers that affect their sexual health. Sex education programmes have been developed by professionals working in the field of intellectual disabilities with the aim to overcome these barriers. The aim of this study was to explore the development of these programmes. Methods: Sex education…

  18. Staff attitudes towards people with intellectual disabilities in Japan and the United States.

    Science.gov (United States)

    Horner-Johnson, W; Keys, C B; Henry, D; Yamaki, K; Watanabe, K; Oi, F; Fujimura, I; Graham, B C; Shimada, H

    2015-10-01

    Staff attitudes may affect choices available to persons with intellectual disabilities (ID). This study examined attitudes towards people with ID among staff working with people with ID in Japan and the United States. Attitudes of staff working with people with ID in Japan and the United States were compared using the Community Living Attitudes Scale, Intellectual Disabilities Form. Responses were examined via multivariate analysis of variance. In unadjusted analyses, Japanese staff exhibited a greater tendency towards Sheltering and Exclusion of people with ID and lower endorsement of Empowerment and Similarity of people with ID. After controlling for covariates, the country effect was no longer significant for Sheltering and Exclusion. Age and education were significantly associated with attitudes in the adjusted model. While attitudes in Japan appeared less supportive of community inclusion of people with ID, some of the differences between countries were attributable to other staff characteristics such as age and education. Findings provide new information about how attitudes of staff in each country compare with each other. © 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  19. Structured Medication Review to Improve Pharmacotherapy in People with Intellectual Disability and Behavioural Problems.

    Science.gov (United States)

    Scheifes, Arlette; Egberts, Toine C G; Stolker, Joost Jan; Nijman, Henk L I; Heerdink, Eibert R

    2016-07-01

    Polypharmacy and chronic drug use are common in people with intellectual disability and behavioural problems, although evidence of effectiveness and safety in this population is lacking. This study examined the effects of a structured medication review and aimed to improve pharmacotherapy in inpatients with intellectual disability. In a treatment facility for people with mild to borderline intellectual disability and severe behavioural problems, a structured medication review was performed. Prevalence and type of drug-related problems (DRPs) and of the recommended and executed actions were calculated. In a total of 55 patients with intellectual disability and behavioural problems, 284 medications were prescribed, in which a DRP was seen in 106 (34%). No indication/unclear indication was the most prevalent DRP (70). Almost 60% of the recommended actions were also executed. This high prevalence of DRPs is worrying. The structured medication review is a valuable instrument to optimize pharmacotherapy and to support psychiatrists in adequate prescribing of both psychotropic and somatic drugs. © 2015 John Wiley & Sons Ltd.

  20. Managing Weight: What Do People with an Intellectual Disability Want from Mobile Technology?

    Science.gov (United States)

    Smyth, Phil; McDowell, Claire; Leslie, Julian C; Leader, Geraldine; Donnelly, Mark; Simpson, Elizabeth; Skelly, Laura

    2017-01-01

    Obesity is a significant health challenge. People with Intellectual Disability (ID) are particularly vulnerable to developing obesity. Mobile technology has been developed to support the management of weight and obesity in the form of apps, although not with people with an ID in mind. As a result existing off-the-shelf weight management apps currently available may not be functional in supporting weight reduction within this population. This paper presents the results of consultations with people with ID regarding weight management, comfort with mobile technology and desired characteristics in apps designed for people with ID that target weight management.

  1. Using action research to design bereavement software: engaging people with intellectual disabilities for effective development.

    Science.gov (United States)

    Read, Sue; Nte, Sol; Corcoran, Patsy; Stephens, Richard

    2013-05-01

     Loss is a universal experience and death is perceived as the ultimate loss. The overarching aim of this research is to produce a qualitative, flexible, interactive, computerised tool to support the facilitation of emotional expressions around loss for people with intellectual disabilities. This paper explores the process of using Participatory Action Research (PAR) to develop this tool.  Participator Action Research provided the indicative framework for the process of developing a software tool that is likely to be used in practice. People with intellectual disability worked alongside researchers to produce an accessible, flexible piece of software that can facilitate storytelling around loss and bereavement and promote spontaneous expression that can be shared with others. This tool has the capacity to enable individuals to capture experiences in a storyboard format; that can be stored; is easily retrievable; can be printed out; and could feasibly be personalised by the insertion of photographs. © 2012 Blackwell Publishing Ltd.

  2. Modification of motivational interviewing for use with people with mild intellectual disability and challenging behaviour.

    Science.gov (United States)

    Frielink, Noud; Embregts, Petri

    2013-12-01

    Motivational interviewing is a promising method to increase treatment motivation for people with mild intellectual disability and challenging behaviour. The purpose of the present study was to identify how professionals could adapt motivational interviewing techniques for use with clients. We conducted semistructured qualitative interviews and focus groups with 26 clients, parents, and professionals. A general inductive approach led to the identification of multiple core themes. The authors recommend several modifications to accommodate motivational interviewing for use with clients: adapt to language level, adjust to cognitive abilities, and control for social desirability of responding. In addition, certain characteristics of professionals were also found to be critical for effective motivational interviewing: trustworthiness, engagement, acceptance, empathy, and honesty. Concrete recommendations for the adaptation of the motivational interviewing techniques for use with people with mild intellectual disability and challenging behaviour are identified. Certain characteristics of professionals are also critical for maximising the treatment motivation of clients.

  3. Early onset ageing and service preparation in people with intellectual disabilities: institutional managers' perspective.

    Science.gov (United States)

    Lin, Jin-Ding; Wu, Chia-Ling; Lin, Pei-Ying; Lin, Lan-Ping; Chu, Cordia M

    2011-01-01

    Although longevity among older adults with intellectual disabilities is increasing, there is limited information on their premature aging related health characteristics and how it may change with increasing age. The present paper provides information of the institutional manager's perception on early onset aging and service preparation for this population. We used purposive sampling to recruit 54 institutional managers who care for people with intellectual disabilities in Taiwan. The present study employed a cross-sectional design using a self-administrative structured questionnaire that was completed by the respondents in November 2009. The results showed that more than 90% of the respondents agreed with earlier onset aging characteristics of people with ID. However, nearly all of the respondents expressed that the government policies were inadequate and the institution is not capable of caring for aging people with ID, and more than half of them did not satisfy to their provisional care for this group of people. With regard to the service priority of government aging policy for people with ID, the respondent expressed that medical care, financial support, daily living care were the main areas in the future policy development for them. The factors of institutional type, expressed adequacy of government's service, respondent's job position, age, and working years in disability service were variables that can significantly predict the positive perceptions toward future governmental aging services for people with ID (adjusted R(2) = 0.563). We suggest that the future study strategy should underpin the aging characteristics of people with intellectual disabilities and its differences with general population to provide the useful information for the institutional caregivers. Copyright © 2010 Elsevier Ltd. All rights reserved.

  4. Predictors of admission to a high-security hospital of people with intellectual disability with and without schizophrenia.

    Science.gov (United States)

    Doody, G A; Thomson, L D; Miller, P; Johnstone, E C

    2000-04-01

    Admission to secure hospital facilities is a rare outcome for people with intellectual disability with or without concomitant psychosis. The present study compares people with mild intellectual disability with and without schizophrenia resident in the Scottish and Northern Irish State Hospital, Carstairs, to matched mild intellectual disability controls, also with and without schizophrenia, in the community. It is hoped that this study may identify socio-demographic, clinical or historical predictors which may lead to admission to secure hospital facilities for people with mild intellectual disability. One hundred and eight subjects were identified from two previous studies which concerned State Hospital patients and patients with intellectual disability with and without schizophrenia. Four experimental groups were derived: (1) 14 individuals with comorbid intellectual disability and schizophrenia who had been resident in the State Hospital; (2) 34 comorbid community control subjects; (3) 33 individuals with intellectual disability and no psychosis who had been resident in the State Hospital; and (4) 27 community control subjects with mild intellectual disability. The four groups were compared on a range of socio-demographic, historical and clinical variables obtained from case records and subject interviews. Relative to community controls, people with intellectual disability and no psychosis in the State Hospital are likely to be single, to have a later age of first psychiatric hospital admission, and to have a history of previous suicide attempts, alcohol abuse or drug misuse. Subjects with comorbid intellectual disability and schizophrenia in the State Hospital are more likely to be male, to have an early age of first psychiatric admission, and to have no family history of either schizophrenia or intellectual disability. Strategies aimed at addressing suicidal behaviour, alcohol and drug misuse amongst people with intellectual disability may facilitate a

  5. End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives.

    Science.gov (United States)

    Wagemans, Annemieke M A; Van Schrojenstein Lantman-de Valk, Henny M J; Proot, Ireen M; Metsemakers, Job; Tuffrey-Wijne, Irene; Curfs, Leopold M G

    2013-09-01

    Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. A qualitative study based on semi-structured interviews, recorded digitally and transcribed verbatim. Data were analysed using Grounded Theory procedures. We interviewed 16 patient representatives after the deaths of 10 people with intellectual disabilities in the Netherlands. The core category 'Deciding for someone else' describes the context in which patient representatives took end-of-life decisions. The patient representatives felt highly responsible for the outcomes. They had not involved the patients in the end-of-life decision-making process, nor any professionals other than the doctor. The categories of 'Motives' and 'Support' were connected to the core category of 'Deciding for someone else'. 'Motives' refers to the patient representatives' ideas about quality of life, prevention from suffering, patients who cannot understand the burden of interventions and emotional reasons reported by patient representatives. 'Support' refers to the support that patient representatives wanted the doctors to give to them in the decision-making process. From the perspective of the patient representatives, the process of end-of-life decision-making can be improved by ensuring clear roles and an explicit description of the tasks and responsibilities of all participants. Regular discussion between everyone involved including people with intellectual disabilities themselves can improve knowledge about each other's motives for end-of-decisions and can clarify expectations towards each other.

  6. A Telemonitoring Tool based on Serious Games Addressing Money Management Skills for People with Intellectual Disability

    OpenAIRE

    Lopez-Basterretxea, Asier; Mendez-Zorrilla, Amaia; Garcia-Zapirain, Begonya

    2014-01-01

    This article presents a telemonitoring tool based on computer games, aimed at money management skill improvement for people with Intellectual Disabilities (ID). The presented tool is divided into two parts: on one hand, some training activities related to payments and currency discrimination based on Serious Games are proposed to the user using a multitouch device. On the other hand, the psychologists and specialist who work with them, can access to the Serious Games results using an online...

  7. Autonomy and Substitute Decision-Making with People with Intellectual Disabilities. Ethical Perspective

    OpenAIRE

    Xabier ETXEBERRIA MAULEON

    2016-01-01

    The text deals with the existing ethical tension between decision-making on behalf of people with intellectual disabilities and substitute decision-making, and the duty-bound respect for the person’s autonomy. The work begins by distinguishing decision- making on behalf of someone and substitute decision-making, consequently favoring the latter, as well as relating autonomy to interdependence. This first clarification leads to the construction of a basic and general criterion for substitute d...

  8. Assistive Technology for an Inclusive Society for People with Intellectual Disability.

    Science.gov (United States)

    Owuor, John; Larkan, Fiona

    2017-01-01

    People with intellectual disability (ID), are some of the most stigmatized and marginalized social groups. Ongoing global initiatives such as the United Nations Convention on the Rights of Persons with Disabilities (UNCPD) and Strategic Development Goals (SDGs) aim to accelerate their inclusion into the society. In many high-income countries, deinstitutionalization of care for people with ID forms part of the broader social inclusion agenda for people with ID into the society. Access to appropriate assistive technology (AT) can mediate the ongoing normalization/inclusion efforts for people with ID. AT can enable users with ID to access societal processes such as education, employment, socialization or independent living. Effective use of AT can also enhance the formation and/or maintenance of interpersonal relationships by people with ID, thus promote their social support.

  9. People with Intellectual Disabilities Talk About Sexuality: Implications for the Development of Sex Education.

    Science.gov (United States)

    Schaafsma, D; Kok, G; Stoffelen, J M T; Curfs, L M G

    2017-01-01

    Existing sex education programmes have failed in involving people with intellectual disabilities in the development of these programmes. Not involving the target population decreases the likelihood that the sex education programme will be effective. This study was conducted to assess the perspectives of people with intellectual disabilities on several sexuality-related topics. Semi-structured interviews were held with 20 people with intellectual disabilities covering topics such as: sex education, relationships, sex, social media, parenthood and support. The reported frequency of sex education the participants receive is low. Their knowledge regarding sex education is mainly limited to topics such as safe sex, contraception and STI's and tends to be superficial. Additionally, knowledge on safe sex does not always translate to safe sex behaviour. Finally, relationships are important for most participants; mainly because they don't want to be alone. Findings from both this study and literature shows that there seems to be a need for high quality sex education. Topics to consider to include are: online relationships, social media and parenthood. It would also be beneficial to focus on sexuality-related skills. Finally, to increase the effectiveness of a sex education programme, it is advisable that a theory-and evidence-based framework, such as Intervention Mapping, is used for its development.

  10. How do people with intellectual disabilities think about empowerment and information and communication technology (ICT)?

    Science.gov (United States)

    Renblad, Karin

    2003-09-01

    Several studies from the 1990s show that information and communication technology (ICT) can be important for people with intellectual disabilities, although later results have queried what importance technology can have in increasing the influence and participation of this group. This article presents the results from a study of people with moderate and mild intellectual disabilities and their view of issues related to empowerment and ICT. Data were collected through a study of original sources, participation observation, a group interview and four in-depth interviews with people with mild intellectual disabilities. Results show that respondents feel that it is important to be able have an influence on issues concerning work, housing, leisure time and social relationships. The way one views one's own ability to influence and control situations depends on individual self-esteem, social networks, previous experience and knowledge; the participants' coping skills also depend on these factors to a great extent. The ten participants who were interviewed had experience with ICT and felt that it was useful and enjoyable in a variety of ways concerning their studies, work and, for some, even their leisure time. Computers were used to gather information, to communicate with the surrounding world, to shop, for creative activities and for games. The respondents used media, such as television, radio, music systems and daily papers, for recreation and to gain information and knowledge.

  11. Job satisfaction of people with intellectual disabilities: the role of basic psychological need fulfillment and workplace participation

    NARCIS (Netherlands)

    Akkerman, Alma; Kef, Sabina; Meininger, Herman P.

    2018-01-01

    Purpose: Knowledge on what contributes to job satisfaction of people with intellectual disabilities is limited. Using self-determination theory, we investigated whether fulfillment of basic psychological needs (i.e., autonomy, relatedness, competence) affected job satisfaction, and explored

  12. Psychological correlates of formal carers of people with intellectual disability: a Portuguese sample

    Directory of Open Access Journals (Sweden)

    Luís Martins

    2015-02-01

    Full Text Available Aims: Daily work with people with mental disabilities is extremely demanding, both physically and psychologically. This study aims to characterize different workers of institutions that deliver care to people with intellectual disabilities regarding their stress vulnerability, personality type, coping strategies and psychopathological symptoms and explore associations between these variables and some sociodemographic and professionals variables. Methods: 68 professionals from institutions that work with people with mental disabilities, aged between 19 to 62 years (M = 36.3, SD = 11.65, answered a sociodemographic questionnaire, the 23-Stress Vulnerability Questionnaire (23-QVS, the Eysenck Personality Inventory-12 (EPI-12, the Brief Cope, and the Brief Symptoms Inventory (BSI. Results: In this sample of workers, higher levels of stress vulnerability were associated with higher levels of neuroticism and of psychopathological symptoms. Women presented higher levels of somatization, younger professionals and with less education were more vulnerable to stress. Work overload was associated to stress vulnerability and to psychopathological symptoms. Conclusions: This study confirms that workers of institutions that receive people with intellectual disabilities present higher levels of stress vulnerability and higher risk of developing psychopathological symptoms. It is urgent to implement intervention measures (preventive and/or therapeutic to relieve these professionals stress, improving their mental health. It seems that workers with higher levels of neuroticism might benefit more from these interventions.

  13. A Desire for Love: Considerations on Sexuality and Sexual Education of People With Intellectual Disability in Poland.

    Science.gov (United States)

    Kijak, Remigiusz J

    2011-03-01

    This article is intended to attract public attention to the fact that people with intellectual disability, despite their delayed sexual development, still remain sexual beings, which is connected with many individual and social consequences. The empirical data collected in this work provides knowledge about biological and psychological conditioning of sexual development of individuals with intellectual disability. However, the problem of sexuality for this population should be further analyzed. One should also think about the possibility of supporting the psychological and sexual development of people with more severe intellectual disability.

  14. Sexuality and Intellectual Disability

    Science.gov (United States)

    ... for loving and fulfilling relationships with others. Individual rights to sexuality, which is essential to human health and well-being, have been denied. This loss has negatively affected people with intellectual disabilities in gender identity, friendships, self-esteem, body image ...

  15. Systemic therapy and the social relational model of disability: enabling practices with people with intellectual disability

    OpenAIRE

    Haydon-Laurelut, Mark

    2009-01-01

    Therapy has been critiqued for personalizing the political (Kitzinger, 1993). The social-relational model (Thomas, 1999) is one theoretical resource for understanding the practices of therapy through a political lens. The social model(s) have viewed therapy with suspicion. This paper highlights – using composite case examples and the authors primary therapeutic modality, systemic therapy – some systemic practices with adults with Intellectual Disability (ID) that enact a position that it is s...

  16. Comparative study of laterality in people with fragile X syndrome, people with intellectual disabilities, and people with typical development.

    Science.gov (United States)

    Niort, Jannick; Hernández Vázquez, Francisco Javier

    2017-07-01

    Following on from the studies by McManus and Cornish [(1997). Fractionating handedness in mental retardation: What is the role of the cerebellum? Laterality, 2(2), 81-89] and Cornish, Pigram, and Shaw [(1997). Do anomalies of handedness exist in children with fragile-X syndrome? Laterality, 2(2), 91-101], the aim of this paper was to determine laterality in people with fragile X syndrome (FXS). The sample comprised three study groups: the first with 30 people with FXS (mean age 17.9 years), the second 34 people with various intellectual disabilities (ID, mean age 20.9 years), and the third 160 people with typical development (mean age 14.7 years). Laterality was assessed with a test adapted for this study. The results confirm the preponderance of right-handedness (93.3%) in people with FXS and present new data regarding footedness and sensory dominance (eyedness and earedness), indicating inconsistent footedness and ocular cross-dominance. Almost three-quarters (73.5%) of people with other ID were right-handed. The results corroborate those of McManus and Cornish (1997). People with FXS tend to be right-handed but have ocular cross-dominance.

  17. Do People with Intellectual Disability Require Special Human Subjects Research Protections? The Interplay of History, Ethics, and Policy

    Science.gov (United States)

    Feudtner, Chris; Brosco, Jeffrey P.

    2011-01-01

    People with intellectual disability (ID) have a long history of discrimination and stigmatization, and a more recent history of pride and self-advocacy. The early history suggests that people with ID are a vulnerable population and deserve special research protections as do some other groups; the disability rights movement of the late 20th century…

  18. Behavioral problems in people with intellectual disability: Basic facts, incidence and risk factors

    Directory of Open Access Journals (Sweden)

    Buha Nataša

    2013-01-01

    Full Text Available In people with intellectual disabilities, behavioral problems result from the interaction of multiple risk factors of different origin, which undoubtedly indicates the importance of knowing their individual characteristics and life circumstances. Incidence, specific forms and topography of behavioral problems depend on different factors, both socio-demographic and inherent ones. Behavioral problems significantly impede acquiring new adaptive skills and have a negative influence on the interaction with the environment. Emotional and behavioral problems are a significant source of stress in children with intellectual disability, as well as their parents and professional staff. These difficulties, especially aggression and disruptiveness, have a big influence on the selection of education model, i.e. on how much the child will be involved in the educational process and the decision whether or not a person will be institutionalized. Better understanding of behavioral problems in people with intellectual disability is the basis of eliminating or reducing risk factors, as well as creating a comprehensive treatment model.

  19. Training staff to promote self-management in people with intellectual disabilities.

    Science.gov (United States)

    Sandjojo, Janice; Zedlitz, Aglaia M E E; Gebhardt, Winifred A; Hoekman, Joop; Dusseldorp, Elise; den Haan, Jeanet A; Evers, Andrea W M

    2018-02-26

    People with intellectual disabilities have increasing difficulties managing their daily affairs. This study examined the effectiveness of a staff training, which teaches staff to promote self-management in people with intellectual disabilities. Effectiveness was assessed with questionnaires addressing clients' (n = 26) independence and self-reliance, support needs and challenging behaviour, using a pre-posttest control group design. Additionally, focus groups were conducted with trained staff members 6 months after the training. In the long term, the intervention group showed a significant increase in independence and self-reliance, in contrast to the comparison group. No effect was found on support needs and challenging behaviour. Trained staff members reported limited benefits of the training, but had noticed changes in their attitude and method of working afterwards. Further self-management research is required to investigate how independence and self-reliance can be promoted more effectively in this population. Future trainings should carefully consider their content, format, and implementation. © 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.

  20. Sibling Caregivers of People With Intellectual and Developmental Disabilities: Sociodemographic Characteristics and Material Hardship Prevalence.

    Science.gov (United States)

    Sonik, Rajan A; Parish, Susan L; Rosenthal, Eliana S

    2016-10-01

    In growing numbers, people with intellectual and developmental disabilities are outliving their parents, or at least their parents' ability to care for them. Consequently, adult siblings without intellectual and developmental disabilities are increasingly taking on primary caregiving responsibilities. However, adult siblings have received little study generally, and sibling caregivers have received even less. We used nationally representative data from the Survey of Income and Program Participation (SIPP) to describe the social characteristics and material hardship levels of sibling caregivers, in comparison to the general working age adult population. This study finds moderate material hardship to be pervasive among sibling caregivers, though extreme levels of hardship are possibly being abated somewhat through public benefit programs. Implications for greater service needs are discussed.

  1. Using Smartphones to Help People with Intellectual and Sensory Disabilities Perform Daily Activities

    Directory of Open Access Journals (Sweden)

    Giulio E. Lancioni

    2017-10-01

    Full Text Available BackgroundPeople with mild-to-moderate intellectual disability and sensory impairments often fail to take initiative in starting and carrying out daily activities, with negative consequences for their occupational condition and social status. Their failure seems due to their inability to determine the right time for the activities and to remember all the activity steps.AimThis study assessed a smartphone intervention, which was designed to help eight participants (four presenting with intellectual disability and blindness and four presenting with intellectual disability and hearing impairment to independently start and carry out daily activities at appropriate times.MethodThe intervention was introduced according to a non-concurrent multiple baseline design across participants. During the intervention, each participant was provided with a smartphone, which was fitted with the time schedule of his or her activities and the verbal or pictorial instructions for the single steps of those activities. When the time for an activity was reached, the participant was automatically reminded to start that activity and, thereafter, he or she was presented with the instructions for it.ResultsThe use of the smartphone intervention promoted great improvement over the baseline for all participants. That is, the participants managed to (a independently start the activities at the scheduled times and (b carry out those activities with high levels of accuracy.ConclusionA smartphone intervention, such as that used in this study, may help people with mild-to-moderate intellectual disability and sensory impairments to successfully engage in daily activities.

  2. Concept of death in young people with intellectual disability: a contribution to the pedagogy on death

    Directory of Open Access Journals (Sweden)

    Pablo RODRÍGUEZ HERRERO

    2015-03-01

    Full Text Available Despite being an essential human condition, death is an under-researched area in the effort to improve people with intellectual disabilities’ life quality. In this article we describe the concept of death among young people with intellectual disabilities. A mixed research methodology that includes quantitative and qualitative approaches was employed, including both a questionnaire and a semi-structured interview. Results indicate that participants have difficulty understanding of biological dimensions of death. Moreover, it has been found that participants present a wide range of opinions, attitudes and beliefs about death. Conclusions reflect on implications of these results for a possible pedagogy on death in young adults that would include accompaniment during bereavement.

  3. Do Social Networks Differ? Comparison of the Social Networks of People with Intellectual Disabilities, People with Autism Spectrum Disorders and Other People Living in the Community

    Science.gov (United States)

    van Asselt-Goverts, A. E.; Embregts, P. J. C. M.; Hendriks, A. H. C.; Wegman, K. M.; Teunisse, J. P.

    2015-01-01

    The aim of this study was to determine the similarities and differences in social network characteristics, satisfaction and wishes with respect to the social network between people with mild or borderline intellectual disabilities (ID), people with autism spectrum disorders (ASD) and a reference group. Data were gathered from 105 young adults…

  4. Differentiating characteristics of deafblindness and autism in people with congenital deafblindness and profound intellectual disability.

    Science.gov (United States)

    Hoevenaars-van den Boom, M A A; Antonissen, A C F M; Knoors, H; Vervloed, M P J

    2009-06-01

    In persons with deafblindness, it is hard to distinguish autism spectrum disorders from several deafblind specific behaviours caused by the dual sensory impairments, especially when these persons are also intellectually disabled. As a result, there is an over-diagnosis of autism in persons who are deafblind leading to unsuitable interventions. Autism as specified by the DSM-IV was studied in 10 persons with congenital deafblindness with profound intellectual disabilities. Behaviours of people with deafblindness and autism (n = 5) and of people with deafblindness without autism (n = 5) were observed in a semi-standardised assessment. All people with deafblindness showed impairments in social interaction, communication and language. In contrast to persons without autism, people with deafblindness and autism showed significantly more impairments in reciprocity of social interaction, quality of initiatives to contact and the use of adequate communicative signals and functions. No differences between the groups were found for quantity and persistence of stereotyped behaviour, quality of play and exploration and adequate problem-solving strategies. This study indicates that there are some possibilities to differentiate autism from behaviours specific for deafblindness. It also confirms the large overlap in overt behaviours between people with deafblindness and persons with autism.

  5. Job satisfaction of people with intellectual disabilities: the role of basic psychological need fulfillment and workplace participation.

    Science.gov (United States)

    Akkerman, Alma; Kef, Sabina; Meininger, Herman P

    2018-05-01

    Knowledge on what contributes to job satisfaction of people with intellectual disabilities is limited. Using self-determination theory, we investigated whether fulfillment of basic psychological needs (i.e., autonomy, relatedness, competence) affected job satisfaction, and explored associations between workplace participation, need fulfillment and job satisfaction. A total of 117 persons with intellectual disabilities, recruited from a Dutch care organization, were interviewed on need fulfillment at work and job satisfaction. Data on workplace participation was obtained from staff. Questionnaires were based on well-established instruments. Basic psychological need fulfillment predicted higher levels of job satisfaction. Level of workplace participation was not associated with need fulfillment or job satisfaction. Allowing workers with intellectual disabilities to act with a sense of volition, feel effective, able to meet challenges, and connected to others is essential and contributes to job satisfaction. It is needed to pay attention to this, both in selection and design of workplaces and in support style. Implications for rehabilitation Knowledge on factors that contribute to job satisfaction is necessary to improve employment situations and employment success of people with intellectual disabilities. In order to achieve job satisfaction, it is essential that workplaces allow for fulfillment of the basic psychological needs for autonomy, relatedness, and competence of people with intellectual disabilities. People with intellectual disabilities are able to report on their needs and satisfaction, and it is important that their own perspective is taken into account in decisions regarding their employment situation.

  6. Inclusion as heterotopia: Spaces of encounter between people with and without intellectual disability

    Directory of Open Access Journals (Sweden)

    Herman Meininger

    2013-08-01

    Full Text Available The public space to which - in line with common definitions of inclusion - persons with intellectual disability are designated often turns out to be a space of discrimination. The aim of this study is to identify spaces of encounter. Michel Foucault's concept of heterotopia - 'other spaces' - and its subsequent interpretations are used as an analytical tool for evaluating efforts to include persons with intellectual disability in society. In Foucault's work 'space' refers to geographical places and to 'sites' that can be defined by sets of relations. Among these spaces are 'counter-sites' like large scale residential facilities for people with intellectual disability. Though policies of deinstitutionalisation aim at erasure of these places of exclusion, the results are often disappointing, largely because these policies ignore the analysis of power dynamics that install exclusionary processes and structures. Recent interpretations of the concept of heterotopia position the 'other places' in the middle of ordinary life as social spaces of encounter and dialogue between the 'normal' and the 'abnormal'. Characteristics and practical conditions of such spaces of encounter are explored. These interpretations open up a new conceptualisation of inclusion in terms of niches in which encounter and dialogue are cultivated and an alternative social ordering can be exercised.

  7. The experiences of high intensity therapists delivering cognitive behavioural therapy to people with intellectual disabilities.

    Science.gov (United States)

    Marwood, Hayley; Chinn, Deborah; Gannon, Kenneth; Scior, Katrina

    2018-01-01

    People with intellectual disabilities (ID) should be able to access the Improving Access to Psychological Therapies (IAPT) programme, currently a main provider of mainstream mental health services in England. IAPT offer cognitive behavioural therapy (CBT) to individuals experiencing mental health problems, although its effectiveness for people with ID, when delivered within IAPT, is unclear. Ten high-intensity therapists took part in semi-structured interviews, analysed using thematic analysis, regarding their experiences of delivering CBT to people with ID in IAPT. The rigidity of the IAPT model appears to offer a poor fit with the needs of people with ID. Therapists appeared uncertain about how to modify CBT and highlighted training and service development needs. Findings suggest barriers to accessing IAPT largely remain unaddressed where people with ID are concerned. Services may need to reconsider what constitutes appropriate reasonable adjustments to ensure equitable access. © 2017 John Wiley & Sons Ltd.

  8. Sexual health for people with intellectual disability Salud sexual para personas con discapacidad intelectual

    Directory of Open Access Journals (Sweden)

    Gillian Eastgate

    2008-01-01

    Full Text Available People with intellectual disability experience the same range of sexual needs and desires as other people. However, they experience many difficulties meeting their needs. They may be discouraged from relieving sexual tension by masturbating. They face a high risk of sexual abuse. They are likely not to be offered the full range of choices for contraception and sexual health screening. Poor education and social isolation may increase their risk of committing sexual offences. However, with appropriate education and good social support, people with intellectual disability are capable of safe, constructive sexual expression and healthy relationships. Providing such support is an essential part of supporting people with intellectual disability.Las personas con discapacidad intelectual experimentan el mismo rango de necesidades y deseos sexuales que las demás, sin embargo éstas encuentran muchas dificultades para satisfacer sus necesidades. En ocasiones se les desalienta de aliviar la tensión sexual mediante masturbación, corren un alto riesgo de sufrir abuso sexual y es muy probable que no se les ofrezcan todas las opciones de anticoncepción y exámenes de salud sexual. La escasa educación y el aislamiento social pueden aumentar el riesgo de que cometan infracciones sexuales. Sin embargo, con una educación apropiada y con un buen apoyo social las personas con discapacidad intelectual pueden encontrar relaciones saludables y una expresión sexual segura y constructiva. Parte esencial de la asistencia a las personas con discapacidad intelectual consiste precisamente en proporcionarles dicho apoyo.

  9. Distinguishing subtypes of extrinsic motivation among people with mild to borderline intellectual disability.

    Science.gov (United States)

    Frielink, N; Schuengel, C; Embregts, P

    2017-07-01

    According to self-determination theory, motivation is ordered in types, including amotivation, extrinsic motivation and intrinsic motivation. Self-determination theory defines four subtypes of extrinsic motivation: external motivation, introjected motivation, identified motivation and integrated motivation. Although it has been argued theoretically that the different types of motivation are universally applicable, Reid et al. () proposed a dichotomy of broad subtypes of extrinsic motivation for people with intellectual disability (ID) due to their cognitive limitations. The current study challenges this proposal by testing whether the four subtypes of extrinsic motivation can be differentiated among people with ID as well. The subtypes of extrinsic motivation were measured using two adapted versions of the Self-Regulation Questionnaire, one regarding exercise and one regarding support. In total, 186 adults with mild to borderline ID participated in the study. Results supported the distinction between the four subtypes of extrinsic motivation regarding both exercise and support. In addition, the correlation coefficients supported a quasi-simplex pattern of correlations among the subtypes, indicating that adjacent subtypes were more closely related than non-adjacent subtypes. Moreover, the study showed sufficient Cronbach's alphas and test-retest reliabilities for early stage research. Overall, the results of the current study provide initial evidence for the universality of the four subtypes of extrinsic motivation across populations with and without ID. © 2017 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd.

  10. Gender differences in psychiatric diagnoses in older people with intellectual disability: a register study.

    Science.gov (United States)

    Axmon, Anna; Sandberg, Magnus; Ahlström, Gerd

    2017-05-22

    Gender differences regarding psychiatric ill-health are well known in the general population. However, not much research is done on people with intellectual disability, and especially not among older people with intellectual disability. People with intellectual disability aged 55+ years in 2012 in Sweden were identified through a register containing information on those receiving support and service for this type of disability. The cohort comprised 3609 women and 4327 men with mean age 65 and 64 years, respectively. Information on psychiatric diagnoses was collected from the National Patient Register for the period 2002-2012. Potential gender differences were evaluated both for diagnostic categories (e.g. affective disorders) and single diagnoses (e.g. depressive episodes). The most common diagnoses among women were in the diagnostic category affective disorders, and among men in psychotic disorders. The majority of both women (72%) and men (71%) had diagnoses in only one diagnostic category. Women were more likely than men to have at least one diagnosis of dementia (odds ratio 1.40, 95% confidence interval 1.06-1.83) or affective disorders (1.33, 1.21-1.58) during the study period. They were, however, less likely to have at least one diagnosis of alcohol/substance use related disorder (0.59, 0.43-0.80). No gender differences were found for diagnoses of psychotic (1.04, 0.86-1.27) or anxiety disorders (1.15, 0.94-1.40). Regarding single diagnoses, women were more likely than men to have had at least one diagnosis of unspecified nonorganic psychosis (1.75, 1.23-2.50), depressive episode (1.47, 1.19-1.82), recurrent depressive disorder (1.53, 1.06-2.22), other anxiety disorder (1.34, 1.06-1.69), or dementia in Alzheimer disease (2.50, 1.40-4.49), but less likely to be diagnosed with psychiatric and behavioral disorders due to use of alcohol (0.41, 0.27-0.61). As in the general population, there seem to be gender differences with respect to several types of

  11. Prevalence and incidence of workplace bullying among Spanish employees working with people with intellectual disability.

    Science.gov (United States)

    Carretero, Noelia; Luciano, Juan V

    2013-10-01

    Although workplace bullying is a severe psychosocial risk with a high prevalence, there is a lack of studies addressing its incidence, particularly among staff working with people with intellectual disability. We examined the prevalence and incidence of workplace bullying in a sample of Spanish employees working with people with intellectual disability. The socio-demographic characteristics of victims and non-victims of workplace bullying were also analyzed. Multicenter study with two phases (T1 and T2) carried out in Valencia (Spain). The sample consisted of 696 employees from 66 centers in T1. One year later (T2), 422 employees from 61 centers agreed to participate in the study again. Workplace bullying was assessed by means of the instrument "Mobbing-UNIPSICO". The prevalence of workplace bullying was 18.9% and 20.4% in T1 and T2, respectively. Of the 335 employees who were not victims of workplace bullying at T1 who were followed up at T2, 36 reported that they suffered workplace bullying a year later, that is, the accumulated incidence was 11%. In contrast, 81 workers who had been victims of workplace bullying at T1 and who were followed up at T2, 32 reported that they did not suffered from workplace bullying a year later. The victims had more stable contracts and more seniority in the organization/job than the non-victims in T1, but this result was not replicated in T2. Workplace bullying is a phenomenon with substantial prevalence, but also with considerable incidence (11%) among staff working with people with an intellectual disability. Copyright © 2013 Elsevier Inc. All rights reserved.

  12. The Provision of Psychological Therapy to People with Intellectual Disabilities: An Investigation into Some of the Relevant Factors

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    Mason, J.

    2007-01-01

    Background: Five factors are proposed as important in influencing the provision of psychological therapy to people with intellectual disabilities (IDs): the perceived effectiveness of psychological therapy, individual clinician competence, service resources (number of trained clinicians), the level of the clients disability and the diagnostic…

  13. Needs and Supports of People with Intellectual Disability and Their Families in Catalonia

    Science.gov (United States)

    Vilaseca, Rosa; Gràcia, Marta; Beltran, Francesc S.; Dalmau, Mariona; Alomar, Elisabeth; Adam-Alcocer, Ana Luisa; Simó-Pinatella, David

    2017-01-01

    Background: The study assesses the support needs of individuals with intellectual disability and their families in Catalonia. The present authors examine family quality of life (FQoL), identify the individual services required and assess families' perceptions of the extent to which their family member with intellectual disability and they…

  14. Early Detection of Dementia in People with an Intellectual Disability--A German Pilot Study

    Science.gov (United States)

    Kuske, Bettina; Wolff, Christian; Gövert, Uwe; Müller, Sandra Verena

    2017-01-01

    Background: This study investigated the application of a newly developed neuropsychological assessment, the Wolfenbütteler Dementia Test for Individuals with Intellectual Disabilities (WDTIM) in combination with the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID). Methods: The instruments were evaluated in…

  15. Characteristics of People with Intellectual Disabilities in a Secure U.S. Forensic Hospital

    Science.gov (United States)

    Stinson, Jill Diane; Robbins, Sharon Bradford

    2014-01-01

    Prior research examining persons with intellectual disabilities who have committed criminal offenses has focused primarily on correctional populations, or those who reside in secure forensic settings in the United Kingdom and Australia. This study describes 235 persons with intellectual, developmental, and cognitive disabilities who reside in a…

  16. Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique.

    Science.gov (United States)

    Tuffrey-Wijne, I; Wicki, M; Heslop, P; McCarron, M; Todd, S; Oliver, D; de Veer, A; Ahlström, G; Schäper, S; Hynes, G; O'Farrell, J; Adler, J; Riese, F; Curfs, L

    2016-03-24

    Empirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe. A two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance. A total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities. The proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be

  17. The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis.

    Science.gov (United States)

    Lord, Ailsa J; Field, Stephen; Smith, Ian C

    2017-11-01

    Historically, people with intellectual disabilities have tended to be excluded from knowing about death, dying and bereavement. Staff in intellectual disability services can play a valuable role in improving understanding of these issues in those they support. This qualitative metasynthesis aimed to understand the experiences of staff supporting adults with intellectual disabilities with issues of death, dying and bereavement. Thirteen papers were identified following a systematic review of six databases. Three themes were developed following a lines-of-argument synthesis: (i) talking about death is hard: negotiating the uncertainty in death, dying and bereavement; (ii) the commitment to promoting a "good death"; and (iii) the grief behind the professional mask. "A cautious silence: The taboo of death" was an overarching theme. A more open culture around issues of death, dying and bereavement in intellectual disability settings is essential and could be promoted through staff training and support. © 2017 John Wiley & Sons Ltd.

  18. Intellectual disability

    Science.gov (United States)

    ... below average Development way below that of peers Intelligence quotient (IQ) score below 70 on a standardized ... Social. Nutrition programs can reduce disability associated with malnutrition. Early intervention in situations involving abuse and poverty ...

  19. Staff attitudes towards sexuality in relation to gender of people with intellectual disability: a qualitative study.

    Science.gov (United States)

    Young, Rhea; Gore, Nick; McCarthy, Michelle

    2012-12-01

    Research has found staff attitudes regarding the sexuality of people with intellectual disability (ID) to be negative but influenced by several factors. The current study aimed to examine whether gender of people with ID affects such attitudes. Semistructured interviews were completed with 10 staff members and analysed using thematic analysis. Results indicated 3 themes: Women are perceived as sexually innocent, men as more sexually motivated, and motivations for sexual relationships are perceived to differ between men and women with ID. The study indicates unfavourable attitudes towards sexuality in individuals with ID that correlate with traditional, restricted gender stereotypes. The identification of these themes highlights the importance of considering gender when supporting the sexuality of people with ID.

  20. Job Satisfaction of People With Intellectual Disability: Associations With Job Characteristics and Personality.

    Science.gov (United States)

    Akkerman, Alma; Kef, Sabina; Meininger, Herman P

    2018-01-01

    To obtain an understanding of factors associated with job satisfaction of people with intellectual disability (ID), this study investigates the associations of job satisfaction with job characteristics (i.e., job demands, job resources) and personality, using the job demands-resources model. Data were gathered from 117 people and their employment support workers, using structured questionnaires adapted from well-established instruments. Job resources and age were positively associated with job satisfaction. Job demands and personality showed no significant direct associations with job satisfaction. Moderation analyses showed that for people with ID with high conscientiousness, enhanced job demands were associated with reduced job satisfaction, which was not the case for those with low conscientiousness. This study emphasizes the importance of job design.

  1. The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities.

    Science.gov (United States)

    Hall, Sarah A; Rossetti, Zach

    2018-05-01

    Siblings of people with intellectual and developmental disabilities (IDD) often assume key roles to support their brothers and sisters. For people with more significant support needs, siblings may undertake additional roles and responsibilities throughout their lives. The purpose of the present study was to identify and describe the roles of adult siblings who have a brother or sister with severe IDD. Seventy-nine adult siblings from 19 to 72 years of age completed an online survey with open-ended questions about the roles they play in their relationships with their brother or sister. Thematic analysis resulted in identification of several roles including caregiver, friend (social partner), advocate, legal representative, sibling (teacher/role model), leisure planner and informal service coordinator. Siblings assume key roles in the lives of people with IDD and need support from family and professionals to perform these roles. © 2017 John Wiley & Sons Ltd.

  2. Under-diagnosis of mental disorder in people with intellectual disabilities: study of prevalence in population with different degrees of intellectual disability

    Directory of Open Access Journals (Sweden)

    Carlos PEÑA SALAZAR

    2018-03-01

    Full Text Available There are a few studies in the literature analyzing the prevalence of mental illness in people with intellectual disabilities (ID. This study explores the prevalence of mental disorders in adults without previous mental disorder and different degrees of ID. We assessed 142 individuals with varying degrees of ID and with unknown previous psychiatric disorder. We applied the diagnostic battery PAS-ADD based on criteria ICD-10 and DSM-IV TR to analyzed the prevalence of mental disorders in people with mild / moderate ID. We applied the Spanish version of the scale DASH-II to analyze the prevalence of mental disorders in people with severe and profound ID. We found a psychiatric disorder previously undiagnosed in 29.57% of our sample. In people with mild/ moderate ID the most common psychiatric disorder was depressive disorder (33.3%, but in people with severe and profound ID was the anxiety disorder. The most prevalent medical comorbidity was epilepsy (22.5% of the total sample and 39.2% in the population with severe / profound intellectual disabilities. Psychiatric disorders seem to be more common in the population with ID than in the general population, increasing their prevalence and medical comorbidity in severe and profound ID.

  3. How do people with intellectual disability describe the experience of falling in love?

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    Jenni Mattila

    2017-04-01

    Full Text Available The phenomenon of falling in love among people with intellectual disability has not received much attention in research. In this study, seven Finnish young adults (5 women and 2 men with mild intellectual disability (ID were asked about their experiences of falling in love. They were interviewed with a qualitative themed interview method. The data were analyzed with content analysis by searching the participants‘ descriptions of partner selection, the event of falling in love, and how falling in love has changed their lives. The study showed that that young adults with ID were familiar with and able to describe falling in love concretely and in a very positive manner. Love was seen as an important part of well-being. The findings suggest that people who live or work with young adults with ID should be prepared to support them in various phases of love in a way that enhances their cognitive love skills and self-determination in intimate relationships.

  4. Healthy Ageing in People with Intellectual Disabilities from Managers' Perspective: A Qualitative Study.

    Science.gov (United States)

    Johansson, Maria; Björne, Petra; Runesson, Ingrid; Ahlström, Gerd

    2017-08-18

    An increasing number of people with intellectual disability (ID) are reaching older ages today although they experience more health problems than the older population without ID. Leaders in intellectual disability services can greatly influence the conditions for a healthy ageing, and the aim of the present study was to explore healthy ageing in this group from the perspective of the leaders. Interviews with 20 leaders were subjected to qualitative content analysis. The findings gave rise to the overall theme ageing in dependence, which emerged from the following six categories: Supporting self-determination; Inaccessible activities after retirement; Signs of decline; Increased and specific needs for support and care; A non-question of gender; Aspects concerning the end of life and death. A prerequisite for healthy ageing in the case of people with ID is, according to the leaders, that they can live the life according to their preferences and make independent choices whilst at the same time receiving adequate support. With the shrinking of their social network after retirement, they become increasingly dependent on staff and leaders in the group home, who need to know what healthy ageing implies.

  5. Issues in caregiving for older people with intellectual disabilities and their ageing family carers: a review and commentary.

    Science.gov (United States)

    Ryan, Assumpta; Taggart, Laurence; Truesdale-Kennedy, Maria; Slevin, Eamonn

    2014-09-01

    In keeping with worldwide demographic changes and an ageing population, people with intellectual disabilities are living longer and all the evidence suggest that this trend will continue. This 'new' population of older people and their carers will pose challenges for health and social care providers. This paper presents a review of the literature on key issues influencing caregiving for older people with intellectual disabilities and their ageing family carers. The review was undertaken using a framework adapted from the NHS Centre for Reviews and Dissemination. Papers were identified through the use of databases including CINAHL, Science Direct, PsychoInfo, Blackwell Synergy, the Cochrane Library and MEDLINE. The key themes which emerged from the literature and which consequently form the basis of this review include: ageing family carers, future planning and support services. In the context of family caregiving, older people with intellectual disabilities represent a unique group insofar as they are unlikely to be married and therefore have no spouse or dependents to care for them in later life. As a result, parents (usually mothers) have to continue caring for their son or daughter with an intellectual disability as they both grow older, often resulting in a mutually dependent relationship. The caregiving situation is further complicated by poor emergency and future planning and by a lack of appropriate services for this group of individuals. In light of the emergence of a 'new' population of older people with intellectual disabilities, there is an urgent need to develop services and support structures which will enable these individuals and their ageing carers to 'age in place' and when this is no longer possible, to have appropriate alternatives that recognise the duality of their needs as older people and as people with intellectual disabilities. Opportunities for supervision could be one way to increase individuals' awareness of their own role in the team.

  6. Self-concept of people with intellectual disabilities: Implications for support program development

    Directory of Open Access Journals (Sweden)

    Petrović Boban

    2012-01-01

    Full Text Available Self-concept is defined as a sum of perception, thoughts, feelings, evaluation and prediction about oneself as an experienced object, as a participant in the interaction with physical and social environment. As such, this topic is often encountered in working with children, young people and adults with intellectual disabilities (PWID. However, self-concept of PWID has been investigated mainly through psychometric paradigm, using different types of questionnaires for assessment. This did not provide either enough possibilities for active participation of people with ID in the research process, or the possibilities to reach adequate initial information about self-concept of PWID, which may serve as a baseline for development of support programs for self-determination of PWID. Therefore, this study aimed to examine self-concept of PWID in various domains of interest for PWID: global self-image, personality traits, competencies, difficulties in everyday life, awareness of one's own (intellectual disabilities. The research was conducted through a series of five focus groups, with active participation of PWID, through combined workshop activities and discussions in small groups. Focus groups were conducted once a week and 16 participants were divided into two groups, of different ages (22 to 53 years, sex, type and degree of difficulties. All participants spent most of their lives in institutions. Since 2004, they have been living at supported housing for people with disabilities. Based on the analysis of the participants' testimony, there were three global issues with regard to general self-concept: competences and interests, physical appearance, and social roles. With regard to personality traits, attributes such as 'good', 'obedient', 'valuable' occur most frequently. With regard to their competencies and difficulties, those which are most important for full daily life in supported housing have been cited most often. While they recognize their

  7. Understanding low levels of physical activity in people with intellectual disabilities : A systematic review to identify barriers and facilitators

    NARCIS (Netherlands)

    Bossink, Leontien; van der Putten, Annette; Vlaskamp, Carla

    2017-01-01

    Background: People with intellectual disabilities (ID) undertake extremely low levels of physical activity. Aims: To enhance understanding concerning low levels of physical activity in people with ID, this study has three aims: (1) to identify barriers to and facilitators of physical activity in

  8. Informal Social Networks of People with Profound Intellectual and Multiple Disabilities: Relationship with Age, Communicative Abilities and Current Living Arrangements

    Science.gov (United States)

    Kamstra, A.; van der Putten, A. A. J.; Post, W. J.; Vlaskamp, C.

    2015-01-01

    Background: People with profound intellectual and multiple disabilities (PIMD) have limited informal social contacts. Research to determine the factors which can positively influence establishing sound informal social contacts is required. Materials and Methods: Regression analysis for 200 people with PIMD was used to analyse how age,…

  9. Striking the Right Balance: Police Experience, Perceptions and Use of Independent Support Persons during Interviews Involving People with Intellectual Disability

    Science.gov (United States)

    Henshaw, Marie; Spivak, Benjamin; Thomas, Stuart D. M.

    2018-01-01

    Background: Several jurisdictions mandate the presence of an independent support person during police interviews with vulnerable people. The current study investigated police officers' experiences and perceptions of these volunteers during interviews with people with intellectual disability(ies) (ID). Methods: The sample comprised 229 police…

  10. Rights-Based and Person-Centered Approaches to Supporting People with Intellectual Disability: A Dialectical Model

    Science.gov (United States)

    Glicksman, Stephen; Goldberg, Chaim; Hamel, Corey; Shore, Ryan; Wein, Avraham; Wood, Daniel; Zummo, Joseph

    2017-01-01

    Protecting human rights has increasingly become a focus of regulation regarding individuals with Intellectual Disability (ID). While this focus on rights has succeeded in protecting people with ID from many of the most insidious abuses of the past, an over-emphasis on the human rights of people with ID while ignoring other aspects of their…

  11. Evaluating a GPS-Based Transportation Device to Support Independent Bus Travel by People with Intellectual Disability

    Science.gov (United States)

    Davies, Daniel K.; Stock, Steven E.; Holloway, Shane; Wehmeyer, Michael L.

    2010-01-01

    We examined the utility of a PDA-based software system with integrated GPS technology for providing location-aware visual and auditory prompts to enable people with intellectual disability to successfully navigate a downtown bus route. Participants using the system were significantly more successful at completing a bus route than were people in a…

  12. "…Their Opinions Mean Something": Care Staff's Attitudes to Health Research Involving People with Intellectual Disabilities

    Science.gov (United States)

    Hall, Natalie; Durand, Marie-Anne; Mengoni, Silvana E.

    2017-01-01

    Background: Despite experiencing health inequalities, people with intellectual disabilities are under-represented in health research. Previous research has identified barriers but has typically focused on under-recruitment to specific studies. This study aimed to explore care staff's attitudes to health research involving people with intellectual…

  13. Utility of Staff Training on Correcting Sleep Problems in People With Intellectual Disabilities Living in Residential Settings

    NARCIS (Netherlands)

    Hylkema, T.; Petitiaux, W.; Vlaskamp, C.

    While sleep problems in people with intellectual disabilities (ID) living in residential settings are very common, scant attention is paid to them. This study examined how to improve the knowledge and understanding of sleep quality and sleep problems in people with ID among care staff at a

  14. Evaluating a Research Training Programme for People with Intellectual Disabilities Participating in Inclusive Research: The Views of Participants.

    Science.gov (United States)

    Fullana, Judit; Pallisera, Maria; Català, Elena; Puyalto, Carolina

    2017-07-01

    This article presents the results of evaluating a research training programme aimed at developing the skills of people with intellectual disabilities to actively participate in inclusive research. The present authors opted for a responsive approach to evaluation, using a combination of interviews, questionnaires and focus groups to gather information on the views of students, trainers and members of the research team regarding how the programme progressed, the learning achieved and participants' satisfaction with the programme. The evaluation showed that most of the participants were satisfied with the programme and provided guidelines for planning contents and materials, demonstrating the usefulness of these types of programme in constructing the research group and empowering people with intellectual disabilities to participate in research. The evaluation revealed that the programme had been a positive social experience that fostered interest in lifelong learning for people with intellectual disabilities. © 2016 John Wiley & Sons Ltd.

  15. Will You Be My Friend? Understanding Friendships in People with Williams Syndrome and People with Intellectual Disabilities: A Mixed-Method Approach

    Science.gov (United States)

    Krata, Jill

    2010-01-01

    It has been established in the literature, that individuals with intellectual disabilities often experience difficulties in social adjustment (Matson & Fee, 1991; Mulick, Hanson, & Dura, 1991) and experience high rates of peer rejection (Merrel, Merz, Johnson, & Ring, 1992). Furthermore, studies reveal that people with intellectual disabilities…

  16. Implicit Attitudes towards People with Intellectual Disabilities: Their Relationship with Explicit Attitudes, Social Distance, Emotions and Contact.

    Science.gov (United States)

    Wilson, Michelle Clare; Scior, Katrina

    2015-01-01

    Implicit attitude research has expanded rapidly over the last decade and is seen as very promising as it counters biases present in much attitude research such as social desirability. However, most research in the area of intellectual disabilities has focused on explicit attitudes alone. This study examined implicit attitudes to this population and also examined their association with emotional reactions and contact, which have previously been found to have a significant influence on attitudes and stigma. A web based survey consisting of a single target Implicit Association Test, measures of explicit attitudes, social distance, and emotional reactions towards and contact with individuals with intellectual disabilities was completed by 326 adult UK residents. Implicit attitudes were not significantly associated with explicit attitudes, social distance or emotional reactions. Instead there were small to moderate associations between emotional reactions and explicit attitudes and social distance. Implicit attitudes did not vary according to participants' level of contact with individuals with intellectual disabilities, type of the contact relationship (voluntary versus involuntary), gender or educational attainment. In contrast, these participant characteristics did affect explicit attitudes and social distance. Implicit attitudes towards individuals with intellectual disabilities were somewhat negative and, unlike explicit attitudes and stigma, did not vary according to participant demographics or contact. As they may have a negative impact on the lives of people with intellectual disabilities, implicit attitudes merit increased attention in research and interventions in the intellectual disabilities field.

  17. Implicit Attitudes towards People with Intellectual Disabilities: Their Relationship with Explicit Attitudes, Social Distance, Emotions and Contact.

    Directory of Open Access Journals (Sweden)

    Michelle Clare Wilson

    Full Text Available Implicit attitude research has expanded rapidly over the last decade and is seen as very promising as it counters biases present in much attitude research such as social desirability. However, most research in the area of intellectual disabilities has focused on explicit attitudes alone. This study examined implicit attitudes to this population and also examined their association with emotional reactions and contact, which have previously been found to have a significant influence on attitudes and stigma. A web based survey consisting of a single target Implicit Association Test, measures of explicit attitudes, social distance, and emotional reactions towards and contact with individuals with intellectual disabilities was completed by 326 adult UK residents. Implicit attitudes were not significantly associated with explicit attitudes, social distance or emotional reactions. Instead there were small to moderate associations between emotional reactions and explicit attitudes and social distance. Implicit attitudes did not vary according to participants' level of contact with individuals with intellectual disabilities, type of the contact relationship (voluntary versus involuntary, gender or educational attainment. In contrast, these participant characteristics did affect explicit attitudes and social distance. Implicit attitudes towards individuals with intellectual disabilities were somewhat negative and, unlike explicit attitudes and stigma, did not vary according to participant demographics or contact. As they may have a negative impact on the lives of people with intellectual disabilities, implicit attitudes merit increased attention in research and interventions in the intellectual disabilities field.

  18. Self-advocacy for people with intellectual disability in Sweden – organizational similarities and differences

    Directory of Open Access Journals (Sweden)

    Ove Mallander

    2018-02-01

    Full Text Available Self-determination and the ability to express opinions and preferences are fundamental to all people. Self-advocacy (SA among people with intellectual disability (PWID presents opportunities for them to develop skills to have a say and influence changes in their local environments. The aim of this article is to explore and understand organizational similarities and differences of SA groups for PWID in Sweden by focusing their structures and activities. Within the theoretical framework of Resource-Dependency and New Institutional Perspectives, data from six Swedish SA groups belonging to two different national organizations, have been analyzed. Factors such as affinity and expectations show limited differences, while power distribution, rules and the role of support persons point to greater diversity. However, good relations within the local organizational field seems to be essential to maintain strong SA for PWID.

  19. Using qualitative methods in research with people who have intellectual disabilities.

    Science.gov (United States)

    Beail, Nigel; Williams, Katie

    2014-03-01

    JARID has a long and positive association with qualitative research dating back to its first issue. This paper looks at the development of qualitative methods and their application in the field of intellectual disability (ID). When invited to make a contribution on qualitative research for the 25th Anniversary of JARID, the present authors considered the options. We examined the frequency with which qualitative studies have been published in three major intellectual disability journals over a decade, and we considered attempting a systematic review or a meta-synthesis. The volume of published studies has increased, but there were too many across a diverse range of topics for a systematic review of qualitative research in general; but not enough for a systematic review or meta-synthesis with a particular focus. However, there were many issues that needed to be aired. This paper therefore contains some critical reflections on the use of qualitative methods. If we want to hear the voices of people who have ID then we need appropriate ways to do this. Qualitative methods are playing an increasing role in bringing the unknown about people who have ID into the known. The approach plays a valuable role in informing us about the experiences and lives of people who have ID. However, we have identified many methodological issues which will need to be further explored. At the same time, we need to develop methods to enable increased participation of people who have ID in some aspects of research. The participatory paradigm is more established in qualitative approaches as it lends itself to participation in generating research questions, developing interview questions, conducting interviews and even stages of the analysis. There are clearly areas that need to be addressed by trained researchers and the whole process will need some facilitation and support. Writing up for journals is one aspect that could be very problematic: so other forms of dissemination need to be explored

  20. Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring.

    Science.gov (United States)

    Totsika, Vasiliki; Hastings, Richard P; Vagenas, Dimitrios

    2017-05-01

    There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care-giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population-representative data. Poverty and long care-giving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors. © 2016 John Wiley & Sons Ltd.

  1. 6,220 institutionalised people with intellectual disability referred for visual assessment between 1993 and 2003: overview and trends.

    Science.gov (United States)

    van Isterdael, C E D; Stilma, J S; Bezemer, P D; Tijmes, N T

    2006-10-01

    To summarise the results of visual performance tests and other data of institutionalised people with intellectual disability referred to a visual advisory centre (VAC) between 1993 and 2003, and to determine trends in these data. A retrospective medical record review was undertaken of 6,220 consecutive people examined ophthalmologically according to a standard protocol by one VAC that specialised in visual assessment and treatment of people with intellectual disability, between 1993 and 2003. chi2 test for linear trend was used and linear regression coefficients were calculated. The proportion of people aged > or =50 years increased from 19.3% to 34.2% between 1995 and 2003 (pdisability decreased from 80.0% to 52.6% (pvisual impairment or blindness decreased from 70.9% to 22.9% (pvisual disorders decreased from 89.6% to 75.3% (pdisability were identified in 58.4% people; 20.8% had Down's syndrome. Many ocular diagnoses were found, indicating the need for ophthalmological monitoring. Specialised centres are helpful, because assessment and treatment of people with intellectual disability is complicated and time consuming. Protocols for efficient referral will have to be developed. A major task lies ahead to improve the treatment rates of refractive errors, cataract and strabismus, and to find specific causes of intellectual disability.

  2. Sexual Understanding, Sources of Information and Social Networks; the Reports of Young People with Intellectual Disabilities and Their Non-Disabled Peers

    Science.gov (United States)

    Jahoda, A.; Pownall, J.

    2014-01-01

    Background: Sexual development plays a vital part in young people's emotional adjustment. Method: This study compared the sexual understanding of 30 adolescents with mild intellectual disabilities (ID) and 30 non-disabled adolescents, along with their reports of where they obtained sexual information, and the nature of their social networks…

  3. Fostering Emotion Expression and Affective Involvement with Communication Partners in People with Congenital Deafblindness and Intellectual Disabilities.

    Science.gov (United States)

    Martens, Marga A W; Janssen, Marleen J; Ruijssenaars, Wied A J J M; Huisman, Mark; Riksen-Walraven, J Marianne

    2017-09-01

    Recent studies have shown that it is possible to foster affective involvement between people with congenital deafblindness and their communication partners. Affective involvement is crucial for well-being, and it is important to know whether it can also be fostered with people who have congenital deafblindness and intellectual disabilities. This study used a multiple-baseline design to examine whether an intervention based on the Intervention Model for Affective Involvement would (i) increase affective involvement between four participants with congenital deafblindness and intellectual disabilities and their 13 communication partners and (ii) increase the participants' positive emotions and decrease their negative emotions. In all cases, dyadic affective involvement increased, the participants' very positive emotions also increased and the participants' negative emotions decreased. The results indicate that communication partners of persons with congenital deafblindness and intellectual disabilities can be successfully trained to foster affective involvement. © 2016 John Wiley & Sons Ltd.

  4. A review of measures used in the screening, assessment and diagnosis of dementia in people with an intellectual disability.

    Science.gov (United States)

    McKenzie, Karen; Metcalfe, Dale; Murray, George

    2018-02-09

    The increasing number of individuals with an intellectual disability who are at risk of developing dementia highlights the need to use measures with strong psychometric properties as part of the screening, assessment and diagnostic process. Searches were made of clinical and good practice guidelines and English language journal articles sourced from Proquest, Web of Science and Scopus databases (up to July 2017) for tools which were designed or adapted for the purpose of helping to diagnose dementia in people with intellectual disability. Based on a detailed review of 81 articles and guidelines, the present authors identified 22 relevant tools (12 cognitive, 10 behaviour). These were reviewed in terms of their psychometric properties. A number of tools were found to be available for use with people with intellectual disability; however, few were specifically standardized for this purpose which also had comprehensive information about reliability and validity. © 2018 John Wiley & Sons Ltd.

  5. Perceived stigma, self-esteem and social comparison of people with intellectual disability

    OpenAIRE

    Stanković Ivana; Milačić-Vidojević Ivona

    2014-01-01

    The aim of this study was to determine the relationship between self-esteem, perceived stigma and social comparison of persons with intellectual disabilities. The sample consisted of 100 persons with mild and moderate intellectual disability, aged 18 years and older, of different sexes, with or without stigmatized characteristics, who lived in an institution or in a family. We used questionnaires of Perceived stigma, Adapted Scale of Social Comparison and Adapted Rosenberg Self-Esteem Scale. ...

  6. Offending by people with intellectual disabilities in community settings: a preliminary examination of contextual factors.

    Science.gov (United States)

    Wheeler, Jessica R; Clare, Isabel C H; Holland, Anthony J

    2013-09-01

    While several validated measures of the life circumstances of people with intellectual disabilities (ID) have been developed, this stream of research has not yet been well integrated with environmentally oriented criminological theory to explain offending among people with ID. In this study, we attempt to provide a preliminary integration through an investigation of the relationship between contemporary life experiences, well-being, choice and offending among people with ID, exploring the relevance of two classic criminological theories (theories of strain and social control). Questionnaire measures were used to compare a range of 'ordinary' life experiences [the 'Life Experiences Checklist' (LEC)], subjective well-being (the 'Personal Well-being Index - ID') and the extent of choice (the 'Choice Questionnaire'), between offenders (N = 27) and non-offenders (N = 19) with ID recruited through integrated (NHS and Local Authority) multi-disciplinary teams (community teams for adults with learning disabilities). Using regression analyses to explore the strength of associations with offending, it was found that an indicator of impoverished personal relationships, from the LEC provided the best predictor of offending. This finding appears to favour criminological explanations based on social control. Existing measures of life circumstances can be used to explore environmentally oriented criminological theories, bringing benefits to our understanding and treatment of offenders with ID living in community settings. © 2013 John Wiley & Sons Ltd.

  7. A Randomized Controlled Trial of a Specialist Liaison Worker Model for Young People with Intellectual Disabilities with Challenging Behaviour and Mental Health Needs

    Science.gov (United States)

    Raghavan, R.; Newell, R.; Waseem, F.; Small, N.

    2009-01-01

    Background: Twenty-six young people with intellectual disabilities and mental health needs from Pakistani and Bangladeshi communities were recruited as part of a bigger study to examine the effectiveness of a liaison worker in helping young people and their families access appropriate intellectual disabilities and mental health services. Method:…

  8. Symbol labelling improves advantageous decision-making on the Iowa Gambling Task in people with intellectual disabilities.

    Science.gov (United States)

    Dymond, Simon; Bailey, Rebecca; Willner, Paul; Parry, Rhonwen

    2010-01-01

    Individuals with intellectual and developmental disabilities often have difficulties foregoing short-term loss for long-term gain. The Iowa Gambling Task (IGT) has been extensively adopted as a laboratory measure of this ability. In the present study, we undertook the first investigation with people with intellectual disabilities using a two-choice child version of the IGT, with measures of intellectual and executive functioning. Compared to a group of matched controls, people with intellectual disabilities performed advantageously and showed high levels of subjective awareness about the relative goodness and badness of the decks. A symbol labelling intervention, in which participants were taught to label the good and bad decks at regular intervals significantly improved advantageous decision-making to levels approximating that of controls. Factor analysis of executive functioning scores identified working memory and mental flexibility (response initiation and set shifting), with a near-significant inverse correlation between the extent to which the intervention was required and mental flexibility. These findings show, for the first time, that people with intellectual disabilities are capable of performing advantageously on the IGT and add to the growing clinical literature on decision-making. Copyright 2009 Elsevier Ltd. All rights reserved.

  9. In their own words: the place of faith in the lives of young people with autism and intellectual disability.

    Science.gov (United States)

    Liu, Eleanor X; Carter, Erik W; Boehm, Thomas L; Annandale, Naomi H; Taylor, Courtney E

    2014-10-01

    Abstract Although the prominence of spirituality and religious connections among the people of the United States is well documented, little is known about the place of faith in the lives of youth with developmental disabilities. In this qualitative interview study, we examined the perspectives of 20 young people with intellectual disability or autism on their faith, spiritual expressions, and disability. Participants identified key spiritual expressions and themes reflecting the importance of faith in their lives. They also shared perceptions of their disability in the context of their faith, highlighting affirmation and acceptance of their disability. We offer recommendations to families, faith communities, and service systems for supporting the spiritual formation, expression, and connections of young people with disabilities.

  10. Health and wellbeing during transition to adulthood for young people with intellectual disabilities: A qualitative study.

    Science.gov (United States)

    Young-Southward, Genevieve; Cooper, Sally-Ann; Philo, Christopher

    2017-11-01

    Transition to adulthood may have negative consequences for health and wellbeing in individuals with intellectual disabilities (ID), but this aspect of transition has received little investigation. This qualitative study aimed to explore the transition experiences of individuals with ID from their own perspectives, and from that of their parents, in order to identify health or wellbeing implications of transition. Semi-structured interviews were conducted with 17 young people with mild, moderate and severe ID aged 16-27 years and with 23 parents of young people with mild, moderate, severe and profound ID aged 16-26 years. Interviews were analysed using thematic analysis, deploying both emic and etic coding categories. This study provides direct insights into the issues on health and wellbeing that young people with ID and their parents find important during transition. The primary health implication of transition centred on mental health and wellbeing; young people experienced heightened anxiety during transition, and themes identified as contributing to anxiety included: a lack of meaningful activity following school exit; inadequate support during transition; and difficulties associated with 'growing up'. Problem behaviours and obesity were also implicated. The transition from school needs to be better supported in order to ease anxiety for young people during this difficult period. Copyright © 2017 Elsevier Ltd. All rights reserved.

  11. Attitudes towards people with intellectual disability in the UK and Libya: A cross-cultural comparison.

    Science.gov (United States)

    Benomir, Aisha M; Nicolson, Roderick I; Beail, Nigel

    2016-01-01

    The attitude of the general population towards people with intellectual disability (ID) provides important background for policy development. Furthermore, because of changes in attitudes across cultures, it is vital to ground policy development for each country in data from that country. This paper aimed to undertake a cross-cultural study, investigating attitudes to people with ID in Libya in the year 2011, and to compare the Libyan data with those for the UK. This paper provides a cross-cultural analysis of attitudes to people with ID, using a questionnaire study of three groups in Libya and in the UK: science students, psychology students and professionals in ID support. The questionnaire used was the established Community Living Attitude Scales for Mental Retardation (CLAS-MR). In terms of the four CLAS-MR sub-scales, the Libyan sample showed significantly less favourable scores on Empowerment, Similarity and Exclusion than the UK sample, but no significant difference on the Sheltering sub-scale. Within-country analysis indicated no main effects of gender on all four sub-scales in Libya and the UK. This study is the first to undertake quantitative analysis of attitudes to people with ID in Libya. The attitudes were in general less favourable than in the UK and other Western countries, but showed similarities with studies of attitudes to people with ID in Pakistan. Copyright © 2016 Elsevier Ltd. All rights reserved.

  12. A Collaborative Action Research about Making Self-Advocacy Videos with People with Intellectual Disabilities

    Directory of Open Access Journals (Sweden)

    Ann-Louise Davidson

    2015-12-01

    Full Text Available This article presents the results of a collaborative action research conducted with people living with intellectual disabilities (ID who were going through a community integration process. To be successfully integrated into a community, they need to develop basic life skills as much as they need to learn to use mobile technologies for authentic interactions (Davidson, 2012 and to be self-advocates online (Davidson, 2009a. This study used the Capability Approach pioneered by Sen (1992 and Nussbaum (2000, which focusses on what people can do rather than on their deficiencies. I recruited a group of eight people with ID who wished to set goals, engage in developing new capabilities, share their goals and act as models for others with ID who want to learn to live on their own. In this article, I examine the process of developing self-advocacy videos with mobile technologies using the Capability Approach and I analyze the inventory of capabilities collected through this study. I provide recommendations for intervention through mobile technologies with the long term-goal of helping people with ID to become contributing citizens. I discuss the innovative action research methodology I used to help people with ID become self-advocates and take control of the messages they give through producing their own digital resources.

  13. Young People with Intellectual Disability Transitioning to Adulthood: Do Behaviour Trajectories Differ in Those with and without Down Syndrome?

    Science.gov (United States)

    Foley, Kitty-Rose; Taffe, John; Bourke, Jenny; Einfeld, Stewart L.; Tonge, Bruce J.; Trollor, Julian; Leonard, Helen

    2016-01-01

    Background Young people with intellectual disability exhibit substantial and persistent problem behaviours compared with their non-disabled peers. The aim of this study was to compare changes in emotional and behavioural problems for young people with intellectual disability with and without Down syndrome as they transition into adulthood in two different Australian cohorts. Methods Emotional and behavioural problems were measured over three time points using the Developmental Behaviour Checklist (DBC) for those with Down syndrome (n = 323 at wave one) and compared to those with intellectual disability of another cause (n = 466 at wave one). Outcome scores were modelled using random effects regression as linear functions of age, Down syndrome status, ability to speak and gender. Results DBC scores of those with Down syndrome were lower than those of people without Down syndrome indicating fewer behavioural problems on all scales except communication disturbance. For both groups disruptive, communication disturbance, anxiety and self-absorbed DBC subscales all declined on average over time. There were two important differences between changes in behaviours for these two cohorts. Depressive symptoms did not significantly decline for those with Down syndrome compared to those without Down syndrome. The trajectory of the social relating behaviours subscale differed between these two cohorts, where those with Down syndrome remained relatively steady and, for those with intellectual disability from another cause, the behaviours increased over time. Conclusions These results have implications for needed supports and opportunities for engagement in society to buffer against these emotional and behavioural challenges. PMID:27391326

  14. Young People with Intellectual Disability Transitioning to Adulthood: Do Behaviour Trajectories Differ in Those with and without Down Syndrome?

    Directory of Open Access Journals (Sweden)

    Kitty-Rose Foley

    Full Text Available Young people with intellectual disability exhibit substantial and persistent problem behaviours compared with their non-disabled peers. The aim of this study was to compare changes in emotional and behavioural problems for young people with intellectual disability with and without Down syndrome as they transition into adulthood in two different Australian cohorts.Emotional and behavioural problems were measured over three time points using the Developmental Behaviour Checklist (DBC for those with Down syndrome (n = 323 at wave one and compared to those with intellectual disability of another cause (n = 466 at wave one. Outcome scores were modelled using random effects regression as linear functions of age, Down syndrome status, ability to speak and gender.DBC scores of those with Down syndrome were lower than those of people without Down syndrome indicating fewer behavioural problems on all scales except communication disturbance. For both groups disruptive, communication disturbance, anxiety and self-absorbed DBC subscales all declined on average over time. There were two important differences between changes in behaviours for these two cohorts. Depressive symptoms did not significantly decline for those with Down syndrome compared to those without Down syndrome. The trajectory of the social relating behaviours subscale differed between these two cohorts, where those with Down syndrome remained relatively steady and, for those with intellectual disability from another cause, the behaviours increased over time.These results have implications for needed supports and opportunities for engagement in society to buffer against these emotional and behavioural challenges.

  15. Increases in knowledge following a course of sex education for people with intellectual disabilities.

    Science.gov (United States)

    Lindsay, W R; Bellshaw, E; Culross, G; Staines, C; Michie, A

    1992-12-01

    Although sex education programmes are thought to be useful in teaching people with intellectual disabilities, there is very little evidence that the material taught is retained by clients. This paper reports data which has been collected routinely on a sex education programme. Forty-six subjects were assessed on their level of sexual knowledge in seven areas: parts of the body, masturbation, male puberty, female puberty, intercourse, pregnancy and childbirth, and birth control and venereal disease. They were retested after a 9-month sex education programme and tested again at a 3-month follow-up. A control group of 14 subjects were tested on two occasions, 4 months apart. There were significant and substantial increases in sexual knowledge on all areas for the experimental group. The control group showed no corresponding increases in knowledge.

  16. The Close Relationships of People with Intellectual Disabilities: A Qualitative Study.

    Science.gov (United States)

    Sullivan, Faye; Bowden, Keith; McKenzie, Karen; Quayle, Ethel

    2016-03-01

    Positive interpersonal relationships have been found to enhance an individual's quality of life. However, people with intellectual disabilities (PWID) often have restricted social networks, and little is known about their views on close social relationships. The study aimed to explore how this group perceives and experiences close relationships. Ten (6 = men 4 = women) PWID participated. Data were collected using semi-structured interviews, and analysed using interpretive phenomenological analysis. The results report on three of five themes drawn from a larger qualitative study: 'Relationships feeling safe and being useful'; 'Who's in charge?' and 'Struggling for an ordinary life'. Close relationships are valued and desired by PWID, but a variety of barriers inhibit their development and maintenance. This includes the failure of others to value, accept and appropriately support the independence and relationships of PWID. Potential ways of addressing these issues are discussed. © 2015 John Wiley & Sons Ltd.

  17. Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia.

    Science.gov (United States)

    Jokinen, Nancy; Gomiero, Tiziano; Watchman, Karen; Janicki, Matthew P; Hogan, Mary; Larsen, Frode; Beránková, Anna; Heloísa Santos, Flávia; Service, Kathy; Crowe, Jim

    2018-01-01

    This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the "diagnostic phase," (2) the "explorative phase," (3) the "adaptive phase," and (4) the "closure phase." The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.

  18. Social networks of people with mild intellectual disabilities: characteristics, satisfaction, wishes and quality of life.

    Science.gov (United States)

    van Asselt-Goverts, A E; Embregts, P J C M; Hendriks, A H C

    2015-05-01

    A supportive social network is crucial for facilitating social inclusion, which can, in turn, contribute to the quality of life (QOL) for people with intellectual disabilities (ID). In this study, we investigate how people with mild ID perceive their social networks and which network characteristics relate to satisfaction with the network and perceived QOL. Data were gathered from 33 young adults with a mild to borderline ID using structured questionnaires: the MSNA to map the social network, the IDQOL-16 to assess QOL, and a questionnaire to determine satisfaction and wishes with regard to the social network. The majority of the participants (73.1%) were satisfied with their social networks. Improvement in the area of strengthening existing ties (e.g. more frequent contact, better contact) was desired as opposed to expansion of the network. Affection--especially towards family and professionals--was most strongly related to perceived QOL. It appears to be essential that relatives live in the same town, can frequently meet up and provide both emotional and practical support. The significance of family and the importance of high-quality interpersonal relationships between professional and client in the lives of young adults with ID cannot be overestimated. Although measures of satisfaction and wishes can have limitations, in actual practice it is considered useful to assess the opinions of clients with respect to their social networks. Interventions can then be tailored to the needs and wishes of the persons themselves. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  19. Social exclusion and people with intellectual disabilities: a rural-urban comparison.

    Science.gov (United States)

    Nicholson, L; Cooper, S-A

    2013-04-01

    Research suggests that social exclusion is a problem both for people with intellectual disabilities (ID) and for people living in rural areas. This may give rise to a double disadvantage for people with ID living in rural areas. Conversely, aspects of rural life such as community spirit and social support may protect against social exclusion in this population. This study was designed to compare a number of measures of social exclusion in adults with ID living in rural and urban areas, with the aim of identifying whether a double disadvantage exists. Adults with ID were recruited from a rural and an urban area in Scotland. Participants participated in a face-to-face interview and their medical notes were accessed. Social exclusion was investigated using a number of measures comprising: daytime opportunities and physical access to community facilities (using part of the British Institute of Learning Disabilities questionnaire), recent contact with others and the quality of personal relationships (using a modified Interview Measure of Social Relationships questionnaire) and area deprivation by postcode (using the Scottish Index of Multiple Deprivation). The data were analysed using a series of binary logistic regression models that adjusted for variables including age, gender, level of ID, mental illhealth and common physical co-morbidities. A representative sample of adults with ID from rural (n = 39) and urban (n = 633) areas participated. Participants from rural areas were significantly more likely to have any regular daytime opportunity [odds ratio (OR) = 10.8, 95% CI = 2.3-51.5] including employment (OR = 22.1, 95% CI = 5.7-85.5) and attending resource centres (OR = 6.7, 95% CI = 2.6-17.2) than were participants from urban areas. They were also more likely to have been on holiday (OR = 17.8, 95% CI = 4.9-60.1); however, were less likely to use community facilities on a regular basis. Participants from urban and rural areas had a similar number of contacts with

  20. Is EMDR an Effective Treatment for People Diagnosed with Both Intellectual Disability and Post-Traumatic Stress Disorder?

    Science.gov (United States)

    Gilderthorp, Rosanna C.

    2015-01-01

    This study aimed to critically review all studies that have set out to evaluate the use of eye movement desensitization and reprocessing (EMDR) for people diagnosed with both intellectual disability (ID) and post-traumatic stress disorder (PTSD). Searches of the online databases Psych Info, The Cochrane Database of Systematic Reviews, The Cochrane…

  1. Self-Reporting Tool On Pain in People with Intellectual Disabilities (STOP-ID!): A Usability Study

    NARCIS (Netherlands)

    de Knegt, N.C.; Lobbezoo, F.; Schuengel, C.; Evenhuis, H.M.; Scherder, E.J.A.

    2016-01-01

    The use of the Self-reporting Tool On Pain in people with Intellectual Disabilities (STOP-ID!), an online application developed by the authors to aid in the self-reporting of pain, was evaluated in 40 adults with Down syndrome. Comprehension of the use of the tool (the ability to recognize

  2. Critical Analysis of a Population Mental Health Strategy: Effects on Stigma for People with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Hamdani, Yani; Ary, Ayelet; Lunsky, Yona

    2017-01-01

    Introduction: Stigma is widely identified as an issue affecting the health and well-being of people with intellectual and developmental disabilities (IDD), and those with mental illnesses. To address this issue, a population mental health strategy, which includes a focus on reducing stigma and discrimination, was developed by the government of…

  3. Could Participant-Produced Photography Augment Therapeutic Interventions for People with Intellectual Disabilities? A Systematic Review of the Available Evidence

    Science.gov (United States)

    Boulton, Natalie E.; Williams, Jonathan; Jones, Robert S. P.

    2018-01-01

    Background: People with intellectual disabilities are entitled to equitable access to psychological support. Traditional therapeutic approaches often rely on a person's ability to verbally articulate a description of their life, which can be particularly difficult for emotionally salient information. Methods: A systematic literature review was…

  4. Respecting autonomy in the end-of-life care of people with intellectual disabilities: a qualitative multiple-case study.

    NARCIS (Netherlands)

    Bekkema, N.; Veer, A.J.E. de; Hertogh, C.M.P.M.; Francke, A.L.

    2014-01-01

    Background: The aim of this article was to describe how caregivers and relatives shape respect for autonomy in the end-of-life care for people with intellectual disabilities (ID) and to discuss to what extent this corresponds with a relational concept of autonomy, such as described in care ethics.

  5. The Effect of Reminiscence Group Work on Life Satisfaction, Self-Esteem and Mood of Ageing People with Intellectual Disabilities

    Science.gov (United States)

    Van Puyenbroeck, Joris; Maes, Bea

    2009-01-01

    Background: This study evaluates the effects of reminiscence group work on the subjective well-being of ageing people with intellectual disabilities. Methods: The content of the successive group work sessions was manipulated as follows: a control-phase with three "current topics" sessions, an experimental phase with six "reminiscence" sessions and…

  6. A Comparison of Quality of Life Outcomes for People with Intellectual Disabilities in Supported Employment, Day Services and Employment Enterprises

    Science.gov (United States)

    Beyer, Stephen; Brown, Tony; Akandi, Rachel; Rapley, Mark

    2010-01-01

    Background: Policy objectives for people with intellectual disabilities include day service modernization and the promotion of paid employment and quality of life. Quality of life is under represented as an outcome measure in vocational research. This research compares subjective and objective quality of life, and quality of work environment for…

  7. Self-Report Computer-Based Survey of Technology Use by People with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Tanis, Emily Shea; Palmer, Susan; Wehmeyer, Michael; Davies, Daniel K.; Stock, Steven E.; Lobb, Kathy; Bishop, Barbara

    2012-01-01

    Advancements of technologies in the areas of mobility, hearing and vision, communication, and daily living for people with intellectual and developmental disabilities has the potential to greatly enhance independence and self-determination. Previous research, however, suggests that there is a technological divide with regard to the use of such…

  8. Implementing Community Care for People with Intellectual Disability: The Role of Organizational Characteristics and the Innovation's Attributes

    Science.gov (United States)

    Nieboer, Anna P.; Pijpers, Vanessa; Strating, Mathilde M. H.

    2011-01-01

    Background: Community care is the support of people with intellectual disability in everyday life aimed at enhancing their integration into society. This article investigates influences of organizational characteristics on the implementation of community care in the Netherlands. In addition, we explored whether the attributes of community care as…

  9. Unnoticed Post-Void Residual Urine Volume in People with Moderate to Severe Intellectual Disabilities: Prevalence and Risk Factors

    Science.gov (United States)

    de Waal, K. H.; Tinselboer, B. M.; Evenhuis, H. M.; Penning, C.

    2009-01-01

    Background: Increased post-void residual urine volume (PVR) is often seen in geriatric populations. People with intellectual disabilities (ID) have risk factors in common with these populations. Aims: To investigate in adults with ID: (1) Feasibility of portable ultrasound bladder scanning; (2) Prevalence of PVR; and (3) Relations with proposed…

  10. Participant Direction for People with Intellectual and Developmental Disabilities in Medicaid Home and Community Based Services Waivers

    Science.gov (United States)

    Friedman, Carli

    2018-01-01

    Participant direction allows people with intellectual and developmental disabilities (IDD) and/or their families to direct services; in doing so, participant direction shifts participants from passive recipients to active consumers. Medicaid encourages, but does not require, states to allow participant direction. The aim of this study was to…

  11. Effect of Exposure to Special Olympic Games on Attitudes of Volunteers towards Inclusion of People with Intellectual Disabilities

    Science.gov (United States)

    Li, Chunxiao; Wang, Chee Keng John

    2013-01-01

    Background: The aim of this study was to examine the effect of volunteering for Special Olympics Games (SOG) on the attitudes of volunteers towards inclusion of people with intellectual disabilities. Method: A repeated measures design with 3-week follow-up was used. There were 100 volunteers recruited for the study and 90 of them completed the…

  12. Characteristics of Aggressive Behavior in People with Mild to Borderline Intellectual Disability and Co-Occurring Psychopathology

    Science.gov (United States)

    van den Bogaard, Kim J. H. M.; Nijman, Henk L. I.; Palmstierna, Tom; Embregts, Petri J. C. M.

    2018-01-01

    Introduction: People with intellectual disabilities and co-occurring psychopathology have a relatively high likelihood to engage in aggressive behavior. Nevertheless, structured clinical assessment of aggressive behavior, including when and where it occurs, is scarce in this population. Methods: On three wards specializing in the care for people…

  13. Advancing social inclusion in the neighbourhood for people with an intellectual disability: an exploration of the literature

    NARCIS (Netherlands)

    Overmars-Marx, T.; Thomese, G.C.F.; Verdonschot, M.; Meininger, H.

    2013-01-01

    The shift from segregated facilities to community settings did not automatically lead to social inclusion for people with an intellectual disability (ID). Policies are increasingly decentralized but little is known about the factors that are important to realize social inclusion in the

  14. Psychotropic drug use in people with intellectual disability: patterns of use and critical evaluation : patterns of use and critical evaluation

    NARCIS (Netherlands)

    Scheifes, A.

    2015-01-01

    Treatment with psychotropic drugs is highly prevalent in people with intellectual disability, especially in those with behavioural problems. The high rates of psychotropic drug use in this population is contrasted by the limited evidence on their effectiveness and the high risk of adverse events.

  15. Sexual Understanding and Development of Young People with Intellectual Disabilities: Mothers' Perspectives of Within-Family Context

    Science.gov (United States)

    Pownall, Jaycee D.; Jahoda, Andrew; Hastings, Richard; Kerr, Linda

    2011-01-01

    The sexual development of young people with intellectual disabilities is a marker of their transition to adulthood and affects their sense of well being and identity. Cognitive impairments and a socially marginalized position increase dependence on their families to assist with sexual matters. In this study, the authors adopted a novel…

  16. An Ecological Approach to Seeking and Utilising the Views of Young People with Intellectual Disabilities in Transition Planning

    Science.gov (United States)

    Small, Neil; Raghavan, Raghu; Pawson, Nicole

    2013-01-01

    Transition planning using a person-centred approach has, in the main, failed to shape service provision. We offer an alternative based on an ecological understanding of human development linked to public health approaches that prioritise whole system planning. A total of 43 young people with intellectual disabilities, in Bradford, England, who…

  17. Ethnic Factors in Mental Health Service Utilisation among People with Intellectual Disability in High-Income Countries: Systematic Review

    Science.gov (United States)

    Dura-Vila, G.; Hodes, M.

    2012-01-01

    Background: An emerging literature suggests that ethnic and cultural factors influence service utilisation among people with intellectual disability (ID), but this has not previously been reviewed. Aims: To investigate possible ethnic variation in uptake of mental health services in children, adolescents and adults with ID in high-income…

  18. Quality-Enhancing Interventions for People with Profound Intellectual and Multiple Disabilities: A Review of the Empirical Research Literature

    Science.gov (United States)

    Maes, Bea; Lambrechts, Greet; Hostyn, Ine; Petry, Katja

    2007-01-01

    Background: This study provides an overview of empirical research on the effectiveness of quality-enhancing interventions for people with profound intellectual and multiple disabilities (PIMD). Method: Through computerised searches of the PsycINFO and ERIC databases, and using several search criteria specifically relating to the target group and…

  19. Communicating about Death and Dying: Developing Training for Staff Working in Services for People with Intellectual Disabilities

    Science.gov (United States)

    Tuffrey-Wijne, Irene; Rose, Tracey; Grant, Robert; Wijne, Astrid

    2017-01-01

    Background: Many people with intellectual disabilities are affected by death, yet conversations about death are often avoided by staff working with them. This study aimed to assess staff training needs and to develop, trial and evaluate a training course on communicating about death and dying. Method:(i) Semi-structured interviews with 20 staff in…

  20. Day Service Provision for People with Intellectual Disabilities: A Case Study Mapping 15-Year Trends in Ireland

    Science.gov (United States)

    Fleming, Padraic; McGilloway, Sinead; Barry, Sarah

    2017-01-01

    Background: Day services for people with intellectual disabilities are experiencing a global paradigm shift towards innovative person-centred models of care. This study maps changing trends in day service utilization to highlight how policy, emergent patterns and demographic trends influence service delivery. Methods: National intellectual…

  1. Quality of care and service trajectories for people with intellectual disabilities: defining the aspects of quality from the client's perspective.

    Science.gov (United States)

    Barelds, Anna; van de Goor, Ien; van Heck, Guus; Schols, Jos

    2010-03-01

    Care and service trajectories for people with intellectual disabilities (i.e. people with mental retardations) are routes within the healthcare delivery system that consist of all the steps that people with intellectual disabilities and their families have to take in order to realise the needed care and services. This article aims to identify the quality aspects of trajectories that are considered important by people with intellectual disabilities and their parents/relatives. In addition, it examines how these aspects are related to quality determinants mentioned in the literature on integrated care and to authoritative models for quality assessment of care and service delivery. Quality aspects were collected during eight focus group discussions with people with intellectual disabilities or their parents/relatives. In addition, quality determinants of integrated care and authoritative models for quality assessment were selected by means of a thorough review of the literature. Finally, the quality aspects identified using focus groups were compared to the determinants and models found in the literature. The quality aspects presented by people with intellectual disabilities referred particularly to the immediate situation in receiving care and services, such as 'keeping appointments' and 'time and attention', whereas parents/relatives also referred to broader 'organisational issues', such as 'access to support' and 'problems with placement'. The quality aspects, however, are minimally related to the quality determinants of integrated care, probably because clients and their parents/relatives find it difficult to have an overview of the coherence between the various actions that have to be performed, when going through the trajectories. In contrast, the quality aspects seem to fit into the domains of the authoritative models for quality assessment, probably because of the minimal focus of the models on long-term aspects in care and service delivery.

  2. Effects of presentation format and instructions on the ability of people with intellectual disability to identify faces

    OpenAIRE

    Manzanero, Antonio L.; Contreras, María José; Recio, María; Alemany, Alberto; Martorell, Almudena

    2012-01-01

    The aim of this work was to analyze the effect of presentation format and instructions on the ability of people with intellectual disability to identify individuals they did not know and had seen only briefly. With this objective in mind, 2 groups of subjects with mild to moderate intellectual disability were shown a photograph of a person and, after a distracting task, were asked to identify that person in 2 line-ups (target-absent and target-present) with 6 photographs each, where 2 types o...

  3. Intellectual disability among Dutch homeless people: prevalence and related psychosocial problems.

    Directory of Open Access Journals (Sweden)

    Barbara Van Straaten

    Full Text Available BACKGROUND: There is a higher prevalence of intellectual disability (ID among homeless people than in the general population. However, little is known about the additional psychosocial problems faced by homeless people with ID. We describe the prevalence of ID in a cohort of homeless people in the Netherlands, and report relationships between ID and psychosocial problems in terms of psychological distress, substance (misuse and dependence, as well as demographic characteristics in this cohort. METHODS: This cross-sectional study is part of a cohort study among homeless people in the four major cities of the Netherlands. Data were derived from 387 homeless people who were interviewed and screened for ID six months after the baseline measurement. Multivariate logistic regression analyses and χ2 tests were performed to analyze relationships between ID, psychosocial problems and demographic characteristics. FINDINGS: Of all cohort members, 29.5% had a suspected ID. Participants with a suspected ID had a higher mean age, were more likely to be male and to fall in the lowest category of education than participants without a suspected ID. Having a suspected ID was related to general psychological distress (OR  = 1.56, p<0.05, somatization (OR  = 1.84, p<0.01, depression (OR  = 1.58, p<0.05 and substance dependence (OR  = 1.88, p<0.05. No relationships were found between a suspected ID and anxiety, regular substance use, substance misuse and primary substance of use. CONCLUSION: The prevalence of ID among Dutch homeless people is higher than in the general population, and is related to more psychosocial problems than among homeless people without ID. Homeless people with a suspected ID appear to be a vulnerable subgroup within the homeless population. This endorses the importance of the extra attention required for this subgroup.

  4. Defining social inclusion of people with intellectual and developmental disabilities: an ecological model of social networks and community participation.

    Science.gov (United States)

    Simplican, Stacy Clifford; Leader, Geraldine; Kosciulek, John; Leahy, Michael

    2015-03-01

    Social inclusion is an important goal for people with intellectual and developmental disabilities, families, service providers, and policymakers; however, the concept of social inclusion remains unclear, largely due to multiple and conflicting definitions in research and policy. We define social inclusion as the interaction between two major life domains: interpersonal relationships and community participation. We then propose an ecological model of social inclusion that includes individual, interpersonal, organizational, community, and socio-political factors. We identify four areas of research that our ecological model of social inclusion can move forward: (1) organizational implementation of social inclusion; (2) social inclusion of people with intellectual and developmental disabilities living with their families, (3) social inclusion of people along a broader spectrum of disability, and (4) the potential role of self-advocacy organizations in promoting social inclusion. Copyright © 2014. Published by Elsevier Ltd.

  5. Knowledge that people with intellectual disabilities have of their inhaled asthma medications: messages for pharmacists.

    Science.gov (United States)

    Davis, Sharon R; Durvasula, Seeta; Merhi, Diana; Young, Paul M; Traini, Daniela; Bosnic Anticevich, Sinthia Z

    2016-02-01

    Fifteen percent of Australians with intellectual disability (ID) are reported to have asthma. People with ID are at risk of poor health knowledge due to deficits in intellectual and adaptive functioning, but their medication knowledge has largely been ignored in research to date. To explore the level of understanding of asthma medication use of people with ID who self-administer their inhaled medications, in order to inform future educational support. Setting The research was conducted in NSW, Australia, at the participants' homes, the point of health care access, or the offices of relevant support organisations. In this qualitative study face-to-face interviews were conducted with people with ID using a semi-structured interview guide. The interviews were recorded, transcribed and thematically analysed. Main outcome Identification of barriers to asthma medication self-management by people with ID. Seventeen people with ID who self-administer their asthma medications were interviewed. Factors influencing their asthma medication knowledge and use included understanding of their illness and the need for medication; aspects of self-management and autonomy versus dependence. This sample of people with ID had a good understanding of the importance of using their inhaled asthma medications, as well as asthma triggers, and the difference between use of preventer and reliever medications. Both enablers and barriers to asthma medication self-management were identified in the domains of managing attacks, adherence, knowledge of side effects and sources of information on correct use of inhalers. The level of autonomy for medication use varied, with motivation to self-manage asthma influenced by the level of support that was practically available to individual participants. This research investigated aspects of asthma medication self-management of people with ID. Based on the barriers identified, pharmacists should promote use of spacers and written asthma action plans as well

  6. Intellectual disability and homelessness.

    Science.gov (United States)

    Mercier, C; Picard, S

    2011-04-01

    The association between poverty and intellectual disability (ID) has been well documented. However, little is known about persons with ID who face circumstances of extreme poverty, such as homelessness. This paper describes the situation of persons with ID who were or are homeless in Montreal and are currently receiving services from a team dedicated to homeless persons. (1) To describe the characteristics, history and current situation of these persons; and (2) to report within-group differences as a function of gender and current residential status. The data were collected from files using an anonymous chart summary. Descriptive statistics on the whole sample (n = 68) and inferential statistics on cross-tabulations by gender and residential status were performed. Persons with ID exhibited several related problems. Some of these persons, primarily women, experienced relatively short periods of homelessness and their situations stabilised once they were identified and followed up. Other persons with ID experienced chronic homelessness that appeared to parallel the number and severity of their other problems. When compared with a previous epidemiological study of the homeless in Montreal, the population of homeless persons with ID differed from the overall homeless population in a number of respects. The results suggest prevention and intervention targets. The need for epidemiological research appears particularly clear in light of the fact that below-average intellectual functioning has been identified as a risk factor for homelessness and a predisposing factor for vulnerability among street people. © 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

  7. What makes generalist mental health professionals effective when working with people with an intellectual disability? A family member and support person perspective.

    Science.gov (United States)

    Weise, Janelle; Fisher, Karen R; Trollor, Julian N

    2018-05-01

    Generalist mental health professionals are inadequately equipped to meet the rights of people with intellectual disability. A better understanding of the attributes of effective professionals may assist in the development of workforce capacity in this area. Twenty-eight family/support persons of people with intellectual disability participated in four focus groups. Thematic analysis was undertaken applying the Intellectual Disability Mental Health Core Competencies Framework. Participants described attributes that aligned with current professional expectations such as working together and new attributes such as differentiating between behaviour and mental health. An unexpected finding was the need for professionals to be able to infer meaning by interpreting multiple sources of information. Participants also wanted professionals to acknowledge their professional limitations and seek professional support. Family/support persons identified a range of attributes of effective mental health professionals to support people with intellectual disability. Further research is necessary, particularly from the perspective of people with intellectual disability. © 2017 John Wiley & Sons Ltd.

  8. Suicide amongst people with intellectual disability: An Australian online study of disability support staff experiences and perceptions.

    Science.gov (United States)

    Wark, S; McKay, K; Ryan, P; Müller, A

    2018-01-01

    Individuals with intellectual disability (ID) have a higher likelihood of exposure to identified risk factors for suicide when compared with the general community and have been recognised as being both capable of forming intent for suicide and acting on this intent. However, in spite of research outlining these concerns from the 1970s, there remains a dearth of studies that examine suicide amongst the population of people with ID. An online cross-sectional survey was purposively developed, with questions aimed at identifying both the experiences and current practices of support staff who assist people with ID in relation to suicide, suicidal behaviour and suicide assessment. It was undertaken across both rural and metropolitan areas in Australia. The survey was open for a period of 12 months. A total of 139 respondents (109 female/30 male), with a mean age of 41 and an average 12 years of experience in supporting people with ID, completed the tool. A total of nine suicides by people with ID were reported. Seventy-seven per cent of the respondents reported that they had individuals with ID display suicidal behaviours, and 76% noted that a person had specifically talked about wishing to end their life. Only four participants (3%) noted that they did not support individuals with a dual diagnosis of ID and mental health concern. Sixty per cent of participants reported that no one in their organisation had ever completed a suicide risk assessment, and only 28% reported that they would do a suicide risk assessment if an individual that they supported was diagnosed with a mental health issue. The current findings indicate that support staff recognise the capacity of people with ID to conceptualise suicide, note the existence of suicidal discussions and behaviours and report on actual suicides. This represents one of the few Australian studies that has specifically considered suicide amongst this cohort of people and reinforces the fact that suicide is not unknown in

  9. Practice leadership and active support in residential services for people with intellectual disabilities: an exploratory study.

    Science.gov (United States)

    Beadle-Brown, J; Mansell, J; Ashman, B; Ockenden, J; Iles, R; Whelton, B

    2014-09-01

    We hypothesised that a key factor determining the quality of active support was 'practice leadership' - provided by the first-line manager to focus staff attention and develop staff skills in providing direct support to enable people with intellectual disabilities to have a good quality of life. This exploratory study focused on what levels of practice leadership were found and its role in explaining variation in active support. Relevant aspects of management, including practice leadership, were assessed by questionnaires administered to staff in residential settings alongside observational measures of active support and resident engagement in meaningful activity. Relationships between these variables were explored using regression and post hoc group comparisons. There was wide variation, with average levels of practice leadership being low, though improving over the period studied. Practice leadership had a significant impact on active support, but was fully mediated by the effect of quality of management. When the quality of management was higher better practice leadership did produce a significant difference in active support. However, higher quality of management on its own did not produce better active support. A number of limitations are acknowledged and further research is required. Practice leadership appears to be an important factor in enabling staff to provide active support but as part of generally good management. Given the rather low levels found, attention needs to be given to the training, career development and support of practice leaders and also to how to protect their time from their many other responsibilities. © 2013 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  10. The Relationship between the Workplace Adjustments of People with Intellectual Disabilities and Workplace Supports: A survey of people with intellectual disabilities

    OpenAIRE

    若林, 功; 八重田, 淳

    2016-01-01

    The importance of support in the workplace for persons with disabilities to adjust to working life has long been recognized in the literature. However, the effects of workplace support on the work adjustment of persons with disabilities have not been well documented. This paper examines whether workplace support is related to job satisfaction, performance (as evaluated by employers), organizational commitment, workplace integration, and their intention to quit their jobs. A survey of people w...

  11. Global initiative of the special olympics movement for people with intellectual disabilities.

    Science.gov (United States)

    Myśliwiec, Andrzej; Damentko, Mariusz

    2015-03-29

    The mission of the Special Olympics is to provide year-round sports training and competition in a variety (33) of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy, and participate in sharing of gifts and friendship with their families, other athletes, and their communities. The Special Olympics movement often goes beyond the sports competition formula. During the last few years, the movement has developed many new global initiatives, which expand its former sports activities. They include: Coaching excellence and the coaching modelPartnerships with international (regional) sports federationsSports Resources Teams (SRT)Extended quota for high level athletesAthletes Leadership Program (ALPS)Young Athletes ProgramYouth volunteer initiativesUnified Sports ProgramMotor Activity Training ProgramHealthy Athletes Program These initiatives fulfill and expand the existing program, which was launched in 1968 and is the largest sports organization for people with disabilities worldwide, with very important new social, marketing, and developmental aspects of life, going far beyond activities met in other sports organizations.

  12. Global Initiative of the Special Olympics Movement for People with Intellectual Disabilities

    Science.gov (United States)

    Myśliwiec, Andrzej; Damentko, Mariusz

    2015-01-01

    The mission of the Special Olympics is to provide year-round sports training and competition in a variety (33) of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy, and participate in sharing of gifts and friendship with their families, other athletes, and their communities. The Special Olympics movement often goes beyond the sports competition formula. During the last few years, the movement has developed many new global initiatives, which expand its former sports activities. They include: Coaching excellence and the coaching modelPartnerships with international (regional) sports federationsSports Resources Teams (SRT)Extended quota for high level athletesAthletes Leadership Program (ALPS)Young Athletes ProgramYouth volunteer initiativesUnified Sports ProgramMotor Activity Training ProgramHealthy Athletes Program These initiatives fulfill and expand the existing program, which was launched in 1968 and is the largest sports organization for people with disabilities worldwide, with very important new social, marketing, and developmental aspects of life, going far beyond activities met in other sports organizations. PMID:25964828

  13. The Relationship between Problem-Solving Ability and Self-Harm amongst People with Mild Intellectual Disabilities

    Science.gov (United States)

    Rees, Joanna; Langdon, Peter E.

    2016-01-01

    Background The purpose of this study was to investigate the relationship between depression, hopelessness, problem-solving ability and self-harming behaviours amongst people with mild intellectual disabilities (IDs). Methods Thirty-six people with mild IDs (77.9% women, M[subscript age] = 31.77, SD = 10.73, M[subscript IQ] = 62.65, SD = 5.74) who…

  14. The Use of Psychotropic Medication for People with Intellectual Disabilities and Behaviours That Challenge in the Context of a Community Multidisciplinary Team Approach

    Science.gov (United States)

    Niven, Abigail; Goodey, Rebecca; Webb, Alison; Shankar, Rohit

    2018-01-01

    Background: The use of psychotropic medication to manage challenging behaviours of people with intellectual disabilities is a contentious issue which NHS England has now focused on. This paper looks to evaluate this within the multidisciplinary context. Method: Records of clients (n = 106) open to a Community Intellectual Disabilities team for…

  15. Cardiovascular Risk Factors (Diabetes, Hypertension, Hypercholesterolemia and Metabolic Syndrome) in Older People with Intellectual Disability: Results of the HA-ID Study

    Science.gov (United States)

    de Winter, C. F.; Bastiaanse, L. P.; Hilgenkamp, T. I. M.; Evenhuis, H. M.; Echteld, M. A.

    2012-01-01

    Hypertension, diabetes, hypercholesterolemia and the metabolic syndrome are important risk factors for cardiovascular disease (CVD). In older people with intellectual disability (ID), CVD is a substantial morbidity risk. The aims of the present study, which was part of the Healthy Ageing in Intellectual Disability (HA-ID) study, were (1) to…

  16. What is an Intellectual Disability?

    Science.gov (United States)

    ... for Educators Search English Español What Is an Intellectual Disability? KidsHealth / For Kids / What Is an Intellectual Disability? ... learning and becoming an independent person. What Causes Intellectual Disabilities? Intellectual disabilities happen because the brain gets injured ...

  17. Anesthesia for intellectually disabled

    Directory of Open Access Journals (Sweden)

    Kapil Chaudhary

    2017-01-01

    Full Text Available Anesthetizing an intellectually disabled patient is a challenge due to lack of cognition and communication which makes perioperative evaluation difficult. The presence of associated medical problems and lack of cooperation further complicates the anesthetic technique. An online literature search was performed using keywords anesthesia, intellectually disabled, and mentally retarded and relevant articles were included for review. There is scarcity of literature dealing with intellectually disabled patients. The present review highlights the anesthetic challenges, their relevant evidence-based management, and the role of caretakers in the perioperative period. Proper understanding of the associated problems along with a considerate and unhurried approach are the essentials of anesthetic management of these patients.

  18. GUIDED EMPLOYMENT – RIGHTS AND OPPORTUNITIES FOR PEOPLE WITH INTELLECTUAL DISABILITIES

    Directory of Open Access Journals (Sweden)

    Erna ZHGUR

    2017-03-01

    Full Text Available Introduction: People with intellectual disabilities (ID are often excluded from the labour market and face many obstacles on their way to employment. Aim: The main aim is giving the persons with ID a possibility to participate in occasional employment, providing them suitable work skills, sustainable knowledge and competencies, as well as suitable skills for more active life. Materials and methods: We analysed 90 evaluation questionnaires (filled out by students, mentors, parents and craftsmen, during a 3-year project (September 2013 - October 2015. The Spearman Correlation Coefficient and Chi-square test were used for statistical data analysis. Results: We determined the level of satisfaction expressed by parents, mentors and students, related to guided employment (χ2 = 1,07; p > 0,05; χ2 = 0,04; p > 0,05;χ2 = 0,04; p > 0,05. Workshops were balanced with theoretical and practical content (χ2 = 16,58; p 0,05, craftsmen (ϱ = 0,79; p 0,05. Conclusion: Implementation of selected workshops, related to guided employment showed that employment of people with ID is possible under professional guidance of mentors.

  19. (The null) Importance of police experience on intuitive credibility of people with intellectual disabilities.

    Science.gov (United States)

    Manzanero, Antonio L; Quintana, José M; Contreras, María J

    2014-10-21

    In the present study, the intuitive ability of police to discriminate between real and false statements of people with mild and moderate (IQ range=50-80, average=60.0) intellectual disabilities (ID) was analyzed. The assessments issued by groups with different levels of experience in police techniques (psychology students, and police officers) were compared. The results showed no differences between the two groups in their ability to discriminate (d'=0.785 and d'=0.644, respectively). When the experience of the police was taken into consideration, no differences were found between "experienced" and "novice" police officers (d'=0.721 and d'=0.582, respectively). No differences were found in response criteria, which were neutral in all cases. Moreover, 34.73% of cases evaluated by the inexperienced group were incorrectly discriminated, in comparison to the 37.75% of incorrect assessments made by police. The implications of the limited ability of intuition to discriminate between real and simulated victims with ID, which did not yield significant differences between experienced and inexperienced assessors in obtaining and assessing statements, are discussed. In light of the results of this study, it is concluded that adequate resources and standardized procedures to properly address people with ID who come into contact with the police and judicial institutions need to be provided. Copyright © 2014 Elsevier Ltd. All rights reserved.

  20. A Systematic Review of Animal-Assisted Therapy on Psychosocial Outcomes in People with Intellectual Disability.

    Science.gov (United States)

    Maber-Aleksandrowicz, Sarah; Avent, Cerian; Hassiotis, Angela

    2016-01-01

    The aim of the study was to review the literature on animal assisted therapy (AAT) in people with intellectual disabilities (ID) measuring psychosocial outcomes (behavioural, social, cognitive and emotional). Quantitative studies were found through a systematic search that identified studies using AAT in people with ID and measuring psychosocial outcomes (behavioural, cognitive, emotional and social). The quality of studies was assessed using a standardised tool and rated as strong, moderate or weak. Only published articles from peer-reviewed journals were included. No language or age restrictions were applied. Over half of the included studies were identified outside standard database searches (e.g. hand searching reference lists from included articles, references from AAT websites and using Google Scholar and a Grey Literature Database). Ten studies were included in the final review; two were rated as moderate quality and eight were rated as weak quality. Overall there was a positive improvement reported from studies for all psychosocial outcomes (with some cognitive, behavioural, social, emotional components reaching statistical significance p ≤ 0.01). Despite having no age restrictions, the included studies had participants that were mainly children and adolescents, in particular favouring male participants, which may limit generalisation. More rigorous methodology is required to improve the quality of future studies including in the main multicentre randomised designs and improved reporting according to CONSORT criteria. Further research should expand to include adults with ID and specific disorders such as challenging behaviour or mental illness. Copyright © 2015 Elsevier Ltd. All rights reserved.

  1. Transfer and interference of motor skills in people with intellectual disability.

    Science.gov (United States)

    Mohan, A; Singh, A P; Mandal, M K

    2001-08-01

    Atypical laterality (i.e. the lack of a clear pattern of lateralization) has been found to be a characteristic feature of individuals with intellectual disability (ID). The evidence for this has been based on 'handedness' studies which have contained little information about the ability of people with ID to carry out interhemispheric tasks reflecting bilateral transfer or interference. The present study examined this capacity in individuals with ID by utilizing bilateral transfer and interference paradigms. Right-handed subjects with ID (IQ = 55-76) and controls matched for age and sex were tested for bilateral transfer of motor skill in contralateral hands with a mirror-drawing task. The subjects were also tested for their ability to perform a finger-tapping task while processing verbal and non-verbal stimuli. The findings indicated that people with ID are significantly deficient relative to matched controls in bilateral transfer of motor skills from their non-preferred (left) hand to their preferred (right) one. The effect of interference during performance of the dual task was significantly greater in individuals with ID. Subjects with ID were found to perform better with their non-preferred than with their preferred hand. A within-group comparison revealed that right-handed performance was more affected by interference than left in these subjects.

  2. Striking the Right Balance: Police Experience, Perceptions and Use of Independent Support Persons During Interviews Involving People with Intellectual Disability.

    Science.gov (United States)

    Henshaw, Marie; Spivak, Benjamin; Thomas, Stuart D M

    2018-03-01

    Several jurisdictions mandate the presence of an independent support person during police interviews with vulnerable people. The current study investigated police officers' experiences and perceptions of these volunteers during interviews with people with intellectual disability(ies) (ID). The sample comprised 229 police officers who attended a mandatory firearms training course in Melbourne, Australia, in 2010. Participants commonly reported utilizing independent support persons and displayed a fair understanding of their role. Overall, volunteers were engaged more frequently than family/friends; police considered the volunteers to be more impartial during interviews, whereas family/friends provided a greater level of emotional support to interviewees. Independent support persons need to demonstrate two quite different types of support to people with intellectual disability(ies) during police interviews; these require quite different skill sets and suggest the need for more tailored training and support for these volunteers. Implications for future research and policy are discussed. © 2016 John Wiley & Sons Ltd.

  3. Pain and Pain Assessment in People with Intellectual Disability: Issues and Challenges in Practice

    Science.gov (United States)

    Doody, Owen; Bailey, Maria E.

    2017-01-01

    Background: Individuals with intellectual disability experience the same chronic diseases and conditions as the general population, but are more likely to have physical and psychological co-morbidities, resulting in a higher risk of experiencing pain and having more frequent or severe pain. Method: This position paper aims to highlight the…

  4. Causes of Mortality in Older People with Intellectual Disability: Results from the HA-ID Study

    Science.gov (United States)

    Oppewal, Alyt; Schoufour, Josje D.; van der Maarl, Hanne J. K.; Evenhuis, Heleen M.; Hilgenkamp, Thessa I. M.; Festen, Dederieke A.

    2018-01-01

    We aim to provide insight into the cause-specific mortality of older adults with intellectual disability (ID), with and without Down syndrome (DS), and compare this to the general population. Immediate and primary cause of death were collected through medical files of 1,050 older adults with ID, 5 years after the start of the Healthy Ageing and…

  5. The Sexuality of People with Mild Intellectual Disability: Perceptions of Clients and Caregivers.

    Science.gov (United States)

    Szollos, Agnes A.; McCabe, Marita P.

    1995-01-01

    The sexuality of 25 individuals with mild intellectual disability was assessed based on interviews that addressed their knowledge, experience, feelings, and needs. Compared to 39 college students and 10 care staff, subjects demonstrated a lower level of sex knowledge, less interactive sexual experience, equal frequencies of same-sex experiences,…

  6. Informing and Equipping Parents of People with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Gilson, Cathy B.; Bethun, Lauren K.; Carter, Erik W.; McMillan, Elise D.

    2017-01-01

    The importance of supporting families with members who have intellectual and developmental disabilities (IDD) is well established in both policy and research. Yet little is known about how familiar parents are with existing resources (e.g., programs, supports, trainings), what information they would consider most helpful, and how they would prefer…

  7. Physical Activity and Nutrition Health Promotion Interventions: What Is Working for People with Intellectual Disabilities?

    Science.gov (United States)

    Heller, Tamar; McCubbin, Jeffrey A.; Drum, Charles; Peterson, Jana

    2011-01-01

    A scoping review of studies on physical activity and nutrition health promotion interventions for individuals with intellectual disabilities was conducted. Searches included MEDLINE, PsycINFO, and CINAHL databases from 1986 through July 2006. The final number included 11 articles comprising 12 studies. Generally, this review indicated some…

  8. Feasibility and Reliability of Two Different Walking Tests in People With Severe Intellectual and Sensory Disabilities

    NARCIS (Netherlands)

    Waninge, Aly; Evenhuis, I.E.; Van Wijck, R.; van der Schans, Cees

    2011-01-01

    Background  The purpose of this study is to describe feasibility and test–retest reliability of the six-minute walking distance test (6MWD) and an adapted shuttle run test (aSRT) in persons with severe intellectual and sensory (multiple) disabilities. Materials and Methods  Forty-seven persons with

  9. The prevalence of peripheral arterial disease in middle-aged people with intellectual disabilities

    NARCIS (Netherlands)

    Zaal-Schuller, I. H.; Goorhuis, A. E. M.; Bock-Sinot, A.; Claassen, I. H. M.; Echteld, M. A.; Evenhuis, H. M.

    2015-01-01

    Peripheral arterial disease (PAD) is a manifestation of atherosclerosis below the bifurcation of the abdominal aorta. PAD increases the risk of cardiovascular disease and associated mortality. Little is known about the prevalence of PAD in middle-aged persons with intellectual disabilities (ID). We

  10. Early Onset Ageing and Service Preparation in People with Intellectual Disabilities: Institutional Managers' Perspective

    Science.gov (United States)

    Lin, Jin-Ding; Wu, Chia-Ling; Lin, Pei-Ying; Lin, Lan-Ping; Chu, Cordia M.

    2011-01-01

    Although longevity among older adults with intellectual disabilities is increasing, there is limited information on their premature aging related health characteristics and how it may change with increasing age. The present paper provides information of the institutional manager's perception on early onset aging and service preparation for this…

  11. Attentional Processes in Interactions between People with Profound Intellectual and Multiple Disabilities and Direct Support Staff

    Science.gov (United States)

    Ine, Hostyn; Heleen, Neerinckx; Bea, Maes

    2011-01-01

    Few studies have examined joint attention in interactions with persons with profound intellectual and multiple disabilities (PIMD), despite its important role in high-quality interaction. The purpose of this study is to describe the attention-directing behaviours of persons with PIMD and their direct support staff and the attention episodes…

  12. Pathologic Aerophagia: A Rare but Important Medical Condition in People with Intellectual Disabilities

    Science.gov (United States)

    Wong, Wendy; Sajith, Sreedharan Geetha

    2017-01-01

    Background: Pathologic aerophagia (PA) is characterised by excessive swallowing of air resulting in significant abdominal distension or belching. This is a relatively rare condition in general population but has been reported in up to 8.8% of institutionalised patients with intellectual disability. In severe cases, this can cause volvulus and…

  13. Stigma, Self-Perception and Social Comparisons in Young People with an Intellectual Disability

    Science.gov (United States)

    O'Byrne, Clara; Muldoon, Orla

    2017-01-01

    Whether individuals who have a diagnosis of intellectual disability (ID) perceive and experience stigma has been a matter of some debate. In this paper, we consider the role of the level of ID and gender on perception of stigma in individuals with ID who attend a segregated special secondary school and whether reports of stigma impact…

  14. Differentiating characteristics of deafblindness and autism in people with congenital deafblindness and profound intellectual disability

    NARCIS (Netherlands)

    Hoevenaars-van den Boom, M.A.A.; Antonissen, A.C.F.M.; Knoors, H.E.T.; Vervloed, M.P.J.

    2009-01-01

    In persons with deafblindness, it is hard to distinguish autism spectrum disorders from several deafblind specific behaviours caused by the dual sensory impairments, especially when these persons are also intellectually disabled. As a result, there is an over-diagnosis of autism in persons who are

  15. Las personas con discapacidad intelectual ante las TIC People with Intellectual Disability and ICTs

    Directory of Open Access Journals (Sweden)

    Pedro Gutiérrez Recacha

    2011-03-01

    Full Text Available Las nuevas tecnologías han introducido profundos cambios en nuestro entorno y en los modos de relacionarnos con los demás. La televisión, el teléfono móvil e Internet han abierto nuevas posibilidades de comunicación, ocio y formación para muchas personas. Pero el acceso a las nuevas tecnologías para algunos individuos o grupos sociales puede hallarse condicionado por diferentes barreras. Uno de los grupos que habitualmente resultan «invisibles» en las investigaciones sobre comunicación y nuevas tecnologías es el de las personas con discapacidad intelectual (DI. En la presente investigación han participado 156 personas adultas con DI (trabajadores y usuarios de la Fundación Carmen Pardo-Valcarce en Madrid, España. Se ha llevado a cabo un estudio exploratorio con el fin de caracterizar en términos generales los patrones de uso de las nuevas tecnologías de comunicación (Internet y teléfonos móviles de los participantes, así como sus patrones de consumo de televisión. Como conclusión puede señalarse que las pautas de comportamiento de las personas con DI en relación a las nuevas tecnologías de información y comunicación, en términos generales, se aproximan a las de la población general. Solo en aspectos puntuales podemos encontrar diferencias llamativas. En algunos casos, tales diferencias pueden atribuirse directamente a la DI. Pero también es necesario tener en cuenta un posible efecto estigma actuando en las personas que rodean al individuo con DI, que puede motivar comportamientos discriminatorios.New technologies have dramatically changed our daily lives and the way we are connected to other people. Television, cellular telephony and the Internet have opened up new opportunities in communication, leisure and training, and yet barriers prevent certain social groups from accessing these new technologies. People with intellectual disability (ID, for instance, are often «invisible» to communication and new

  16. An inexorable rise in intellectual disability?

    OpenAIRE

    Michiel Ras; Isolde Woittiez; Hetty van Kempen; Klarita Sadiraj

    2010-01-01

    Original title: Steeds meer verstandelijk gehandicapten? Demand for intellectual disability care has grown strongly in the Netherlands in recent years. Partly at the request of the Dutch Ministry of Health, Welfare and Sport, the Netherlands Institute for Social Research/SCP measured the number of people with intellectual disabilities applying for care. The results are contained in this report. Our inventory reveals that demand for intellectual disability care has risen by an average of 9% pe...

  17. Stories of People Who Have Attended a Lesbian, Gay, Bisexual and Trans Support Group in a Secure Intellectual Disability Service.

    Science.gov (United States)

    Tallentire, Liz; Smith, Matthew; David, Lee; Roberts, Adam; Bruce; Morrow, Sarah; Withers, Paul; Smith, Ian

    2016-08-31

    This research is about people who have intellectual disabilities and live in a secure hospital. It is about a group of people who meet at a support group. The support group is for people who are lesbian, gay, bisexual or transgender. These people with intellectual disabilities helped with planning, doing, and telling other people about the research. They told their stories about going to the support group. Their stories were joined together into a group story. The story said that the group helped people in lots of different ways. For some people going to the group was difficult at first because it was ?coming out'. This means telling other people you are lesbian, gay, bisexual, or transgender. Then it got easier and people started to feel better about themselves. Then they wanted to help others and this was important in their lives. This group seemed to help people get better. We have given some ideas for setting up other groups and doing more research. © 2016 John Wiley & Sons Ltd.

  18. Suffrage for People with Intellectual Disabilities and Mental Illness: Observations on a Civic Controversy.

    Science.gov (United States)

    Kopel, Charles

    Most electoral democracies, including forty-three states in the United States, deny people the right to vote on the basis of intellectual disability or mental illness. Scholars in several fields have addressed these disenfranchisements, including legal scholars who analyze their validity under U.S. constitutional law and international-human-rights law, philosophers and political scientists who analyze their validity under democratic theory, and mental-health researchers who analyze their relationship to scientific categories. This Note reviews the current state of the debate across these fields and makes three contentions: (a) pragmatic political considerations have blurred the distinction between disenfranchisement provisions based on cognitive capacity and those based on personal status; (b) proposals that advocate voting by proxy trivialize the broad civic purpose of the franchise; and (c) the persistence of disenfranchisement on the basis of mental illness inevitably contributes to silencing socially disfavored views and lifestyles. Accordingly, the Note cautions reformers against advocating for capacity assessment or proxy voting, and emphasizes the importance of disassociating the idea of mental illness from voting capacity.

  19. Love and emotional well-being in people with intellectual disabilities.

    Science.gov (United States)

    Arias, Benito; Ovejero, Anastasio; Morentin, Raquel

    2009-05-01

    Love has been a recurrent topic throughout history, and especially, literature. Moreover, there is generalized agreement about its relevance for health emotional well-being, and quality of life. This study was carried out with a sample of 376 persons with ID. The goals of the work were to analyze a theoretical model of love in people with intellectual disabilities by means of the methodology of structural equations, and to analyze their perception of love and of amorous relations with regard to other aspects such as amorous satisfaction, perceived satisfaction, absence of family interference, self-determination, and emotional well-being. The results revealed that (a) the construct under study has three factors: Commitment, stability, and idealization, Passion and physiological excitement, and Intimacy and romanticism; (b) the perception of love in this collective is, in general, idealized and affected by the context; and (c) self-determination and the lack of family interference are relevant variables to explain both love and emotional well-being.

  20. A telemonitoring tool based on serious games addressing money management skills for people with intellectual disability.

    Science.gov (United States)

    Lopez-Basterretxea, Asier; Mendez-Zorrilla, Amaia; Garcia-Zapirain, Begonya

    2014-02-25

    This article presents a telemonitoring tool based on computer games, aimed at money management skill improvement for people with Intellectual Disabilities (ID). The presented tool is divided into two parts: on one hand, some training activities related to payments and currency discrimination based on Serious Games are proposed to the user using a multitouch device. On the other hand, the psychologists and specialist who work with them, can access to the Serious Games results using an online application in order to evaluate their evolution. The results are measured according to the number of errors they have during the proposed activities, the time they need to complete them and the score. The article show the results of an experiment made with a clinical sample of 12 users with ID between 12 and 15 years, taking into account that all of them are capable of correct oral communication and they do not have severe physical coordination problems. Only two users completed all the games without errors. Males obtained a mean of 28.25 errors, whereas females obtained a mean of 17.75. The results show significant difference between the selection of games 1, 2 or 3, because all of them prefer the game 1 related with "Payments" probably because it permits more interaction using the multitouch device. The authors also made a qualitative evaluation and the results have been very promising and satisfactory.

  1. A Telemonitoring Tool based on Serious Games Addressing Money Management Skills for People with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Asier Lopez-Basterretxea

    2014-02-01

    Full Text Available This article presents a telemonitoring tool based on computer games, aimed at money management skill improvement for people with Intellectual Disabilities (ID. The presented tool is divided into two parts: on one hand, some training activities related to payments and currency discrimination based on Serious Games are proposed to the user using a multitouch device. On the other hand, the psychologists and specialist who work with them, can access to the Serious Games results using an online application in order to evaluate their evolution. The results are measured according to the number of errors they have during the proposed activities, the time they need to complete them and the score. The article show the results of an experiment made with a clinical sample of 12 users with ID between 12 and 15 years, taking into account that all of them are capable of correct oral communication and they do not have severe physical coordination problems. Only two users completed all the games without errors. Males obtained a mean of 28.25 errors, whereas females obtained a mean of 17.75. The results show significant difference between the selection of games 1, 2 or 3, because all of them prefer the game 1 related with “Payments” probably because it permits more interaction using the multitouch device. The authors also made a qualitative evaluation and the results have been very promising and satisfactory.

  2. Self-injurious behaviour in people with intellectual disability and autism spectrum disorder.

    Science.gov (United States)

    Oliver, Chris; Licence, Lucy; Richards, Caroline

    2017-03-01

    This review summarises the recent trends in research in the field of self-injurious behaviour in people with intellectual disability and autism spectrum disorder. New data on incidence, persistence and severity add to studies of prevalence to indicate the large scale of the clinical need. A number of person characteristics have been repeatedly identified in prevalence and cohort studies that: can be considered as risk markers (e.g. stereotyped behaviour, autism spectrum disorder) and indicate possible causal mechanisms (e.g. sleep disorder, anxiety). Studies have started to integrate traditional operant learning paradigms with known person characteristics and reviews and meta-analyses of applied behaviour analytic procedures can now inform practice. Despite these positive developments interventions and appropriate support falls far short of the required need. Expansions in applied research are warranted to develop and evaluate innovative service delivery models that can translate knowledge of risk markers and operant learning paradigms into widespread, low cost routine clinical practice. Alongside this, further pure research is needed to elucidate the direction of causality of implicated risk factors, in order to understand and intervene more effectively in self-injury.

  3. Systematic review on the application and effectiveness of treatments based on mindfulness in people with intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Rosa Calderón Vicente

    2018-06-01

    Full Text Available The aim of this work was to carry out a systematic review of scientific studies that have applied psychological mindfulness-based treatments on people with intellectual disabilities to delve into the available evidence regarding their applicability and efficiency. Therefore, a bibliographic research was carried out for the different data bases from July 2015 to May 2016 and different references were taken between 2000 and 2015. Thirteen relevant articles were chosen and analyzed. The reported findings suggested that the mindfulness-based therapies seems to have a positive influence on the behavior and emotions of people over sixteen with borderline, medium and moderate intellectual disabilities. However, these findings should be carefully interpreted due to the methodological limitations identified in the reviewed studies, and it is necessary to continue investigating and improving research designs in order that they can confirm the initial results.

  4. Influence of traditional dance training programs on dynamic balance of people with intellectual disability: a short review

    OpenAIRE

    Vasileios, K.

    2015-01-01

    Traditional dance is gaining popularity as an intervention choice for improving poor balance ability of people with intellectual disability (ID). Balance improvement for individuals with ID through dance provides opportunities for participation in sport activities and promotes independent living. This short review provides in brief research evidence of dynamic balance improvement as measured by means of a balance deck in duration of 30, 45, and 60 sec intervals, highlighting the need to incor...

  5. Medication and supplement use in older people with and without intellectual disability: An observational, cross-sectional study.

    Directory of Open Access Journals (Sweden)

    Jure Peklar

    Full Text Available Understanding the medication and supplement use of aging people is critical to ensuring that health service providers in primary care can optimise use of these agents. An increasing number of people with different levels of intellectual disability (ID are living in the community and becoming for the first time substantial users of primary health care services. This, however, brings new challenges that need to be addressed at the primary health care level. We quantified the use of medicines and food supplements and described the associated patterns of morbidity in the two comparable cohorts of aging population with and without intellectual disability.This research aligned participants of 50 years and over who lived in the community from two nationally representative cohorts of older people; those with ID from the Intellectual Disability Supplement (n = 238 and those without ID (n = 8,081 from the Irish Longitudinal Study on Ageing.Data showed that both medication and supplement use in the two groups was prevalent but that those with ID received more of both medications and supplements (e.g. polypharmacy was 39.0% in ID vs. 18.1% in non-ID cohort. Moreover, based on an analysis of the therapeutic groups and medications used that treatment was more intense in the ID cohort (95.8 vs. 7.0 International Non-proprietary Names per 100 participants. Supplement use was almost twice as prevalent in the ID group but substantially less diverse with only 10 types of supplements reported. Morbidity was higher in the ID group and showed a higher prevalence of neurological and mental health disorders.The results highlight that the burden of therapy management and the potential risks in those ageing with ID differs substantially from those ageing without ID. Understanding the medication and supplement use of people aging with intellectual disability (ID is critical to ensuring that health service providers in primary/ambulatory care can optimise use of these

  6. Do people with intellectual disability require special human subjects research protections? The interplay of history, ethics, and policy.

    Science.gov (United States)

    Feudtner, Chris; Brosco, Jeffrey P

    2011-01-01

    People with intellectual disability (ID) have a long history of discrimination and stigmatization, and a more recent history of pride and self-advocacy. The early history suggests that people with ID are a vulnerable population and deserve special research protections as do some other groups; the disability rights movement of the late 20th century aligns people with ID more closely with the principle of autonomy that has guided clinical and research ethics for the last 40 years. In examining the history of people with ID and the prevailing framework of human subjects research protections in the United States, we conclude that people with ID do not require special protection in human subjects research. The protections that have already been put in place for all individuals, if conscientiously and effectively implemented, achieve the right balance between safeguarding the interest of human research subjects and empowering individuals who choose to do so to participate in research. Copyright © 2012 Wiley Periodicals, Inc.

  7. Self-reported care needs of Dutch homeless people with and without a suspected intellectual disability: a 1.5-year follow-up study.

    Science.gov (United States)

    Van Straaten, Barbara; Rodenburg, Gerda; Van der Laan, Jorien; Boersma, Sandra N; Wolf, Judith R L M; Van de Mheen, Dike

    2017-01-01

    Cognitive impairment is a prevalent problem among the homeless and seems related to more psychosocial problems. However, little is known about the care needs of the subgroup of homeless people with an intellectual disability compared to those without an intellectual disability and how their care needs develop over time. This study explores self-reported care needs within a broad range of life domains among Dutch homeless people with and without a suspected intellectual disability to gain insight into the transition of self-reported care needs from baseline to follow-up in both subgroups. This longitudinal study is part of a cohort study among homeless people who had been accepted for an individual programme plan in four major Dutch cities. The initial cohort consisted of 513 participants who were interviewed in 2011. At 1.5-year follow-up, 336 participants (65.5%) were also interviewed and screened for intellectual disability. Of these participants, 31% (95% CI 26.2-36.1) had a suspected intellectual disability. For both groups, between baseline and follow-up, the number of 'unmet care needs' decreased significantly and the number of 'no care needs' increased significantly, while at follow-up, participants with a suspected intellectual disability reported 'no care needs' on significantly fewer life domains than those without a suspected intellectual disability (mean numbers 16.4 vs. 17.5). Between baseline and follow-up, 'met care needs' decreased significantly on housing for both groups, and increased on finances and dental care for participants with a suspected intellectual disability. At follow-up, participants with a suspected intellectual disability more often preferred housing support available by appointment than those without a suspected intellectual disability. These findings suggest that homeless people who had been accepted for an individual programme plan with a suspected intellectual disability have care needs for a longer period of time than those

  8. Use of health services in the last year of life and cause of death in people with intellectual disability: a retrospective matched cohort study.

    Science.gov (United States)

    Brameld, Kate; Spilsbury, Katrina; Rosenwax, Lorna; Leonard, Helen; Semmens, James

    2018-02-25

    To describe the cause of death together with emergency department presentations and hospital admissions in the last year of life of people with intellectual disability. A retrospective matched cohort study using de-identified linked data of people aged 20 years or over, with and without intellectual disability who died during 2009 to 2013 in Western Australia. Emergency department presentations and hospital admissions in the last year of life of people with intellectual disability are described along with cause of death. Of the 63 508 deaths in Western Australia from 2009 to 2013, there were 591 (0.93%) decedents with a history of intellectual disability. Decedents with intellectual disability tended to be younger, lived in areas of more social disadvantage, did not have a partner and were Australian born compared with all other decedents. A matched comparison cohort of decedents without intellectual disability (n=29 713) was identified from the general population to improve covariate balance.Decedents with intellectual disability attended emergency departments more frequently than the matched cohort (mean visits 3.2 vs 2.5) and on average were admitted to hospital less frequently (mean admissions 4.1 vs 6.1), but once admitted stayed longer (average length of stay 5.2 days vs 4.3 days). People with intellectual disability had increased odds of presentation, admission or death from conditions that have been defined as ambulatory care sensitive and are potentially preventable. These included vaccine-preventable respiratory disease, asthma, cellulitis and convulsions and epilepsy. People with intellectual disability were more likely to experience potentially preventable conditions at the end of their lives. This indicates a need for further improvements in access, quality and coordination of healthcare to provide optimal health for this group. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved

  9. Research participation by people with intellectual disability and mental health issues: an examination of the processes of consent.

    Science.gov (United States)

    Taua, Chris; Neville, Christine; Hepworth, Julie

    2014-12-01

    Balancing the demands of research and ethics is always challenging, and even more so when recruiting vulnerable groups. Within the context of current legislation and international human rights declarations, it is strongly advocated that research can and must be undertaken with all recipients of health-care services. Research in the field of intellectual disability presents particular challenges in regards to consenting processes. This paper is a reflective overview and analysis of the complex processes undertaken, and events that occurred in gaining informed consent from people with intellectual disability to participate in a study exploring their experiences of being an inpatient in mental health hospitals within Aotearoa/New Zealand. A framework based on capacity, information, and voluntariness is presented, with excerpts from the field provided to explore consenting processes. The practical implications of the processes utilized are then discussed in order to stimulate debate regarding clearer and enhanced methods of gaining informed consent from people with intellectual disability. © 2014 Australian College of Mental Health Nurses Inc.

  10. Mood disorders in intellectual disability.

    Science.gov (United States)

    Hurley, Anne D

    2006-09-01

    This article examines reviews and research on the diagnosis and treatment of mood disorders in people with intellectual disability published from September 2004 to December 2005. Patients with intellectual disability have limitations in verbal ability, and with increasing levels of disability may have an atypical clinical presentation. Thus, methods to diagnose mood disorders were a major research focus. Informant-rating scales and two self-report instruments provided data on thought patterns, aberrant behavior, appetite, and suicidality. Behavioral symptoms such as aggression were frequently associated with mood disorders. Pharmacotherapy and electroconvulsive therapy were found to be effective treatments. Mood disorders were frequently identified in people with intellectual disability, although suicide was still quite rare. Patients with milder levels of disability can use self-report measures and can be diagnosed using standard criteria with little modification. For those with more severe disability, diagnosis is challenging and often requires the use of residual categories. Atypical clinical presentation, including maladaptive behaviors, lent support for 'behavioral equivalent' substitutes of standard criteria. Typical pharmacological agents were effective for depression and electroconvulsive therapy for treatment-resistant bipolar disorder.

  11. Using virtual reality to provide health care information to people with intellectual disabilities: acceptability, usability, and potential utility.

    Science.gov (United States)

    Hall, Valerie; Conboy-Hill, Suzanne; Taylor, Dave

    2011-11-14

    People with intellectual disabilities have poor access to health care, which may be further compromised by a lack of accessible health information. To be effective, health information must be easily understood and remembered. People with intellectual disabilities learn better from multimodal information sources, and virtual reality offers a 3-dimensional (3D) computer-generated environment that can be used for providing information and learning. To date, research into virtual reality experiences for people with intellectual disabilities has been limited to skill-based training and leisure opportunities within the young to mid age ranges. This study assessed the acceptability, usability, and potential utility of a virtual reality experience as a means of providing health care-related information to people with intellectual disabilities. We designed a prototype multimodal experience based on a hospital scenario and situated on an island in the Second Life 3D virtual world. We wanted to know how people of different ages and with varying levels of cognitive function would participate in the customized virtual environment, what they understood from being there, and what they remembered a week later. The study drew on qualitative data. We used a participatory research approach that involved working alongside people with intellectual disabilities and their supporters in a community setting. Cognitive function was assessed, using the Matrix Analogies Test and the British Picture Vocabulary Scale, to describe the sample. Participants, supported by facilitators, were video recorded accessing and engaging with the virtual environment. We assessed recall 1 week later, using a specialized interview technique. Data were downloaded into NVivo 8 and analyzed using the framework analysis technique. Study participants were 20 people aged between 20 and 80 years with mild to severe intellectual disabilities. All participants were able to access the environment and voluntarily stayed

  12. Using Virtual Reality to Provide Health Care Information to People With Intellectual Disabilities: Acceptability, Usability, and Potential Utility

    Science.gov (United States)

    Conboy-Hill, Suzanne; Taylor, Dave

    2011-01-01

    Background People with intellectual disabilities have poor access to health care, which may be further compromised by a lack of accessible health information. To be effective, health information must be easily understood and remembered. People with intellectual disabilities learn better from multimodal information sources, and virtual reality offers a 3-dimensional (3D) computer-generated environment that can be used for providing information and learning. To date, research into virtual reality experiences for people with intellectual disabilities has been limited to skill-based training and leisure opportunities within the young to mid age ranges. Objective This study assessed the acceptability, usability, and potential utility of a virtual reality experience as a means of providing health care-related information to people with intellectual disabilities. We designed a prototype multimodal experience based on a hospital scenario and situated on an island in the Second Life 3D virtual world. We wanted to know how people of different ages and with varying levels of cognitive function would participate in the customized virtual environment, what they understood from being there, and what they remembered a week later. Methods The study drew on qualitative data. We used a participatory research approach that involved working alongside people with intellectual disabilities and their supporters in a community setting. Cognitive function was assessed, using the Matrix Analogies Test and the British Picture Vocabulary Scale, to describe the sample. Participants, supported by facilitators, were video recorded accessing and engaging with the virtual environment. We assessed recall 1 week later, using a specialized interview technique. Data were downloaded into NVivo 8 and analyzed using the framework analysis technique. Results Study participants were 20 people aged between 20 and 80 years with mild to severe intellectual disabilities. All participants were able to access

  13. Intellectual Disability and Parenthood

    Directory of Open Access Journals (Sweden)

    Isack Kandel

    2005-01-01

    Full Text Available Parenthood in persons with intellectual disability (ID is an issue of concern for the family, guardians, and professionals as there are many sentiments and problems involved: financial, technical, medical, legal, and above all moral. People with intellectual, developmental, or other disabilities have feelings, want relationships, and are able to have children also. The attitude of society has changed through time from the early eugenic concern with heredity and fertility, to a focus on the risk to the children due to parental neglect or abuse, to acceptance and a search for solutions to parental training and support. This change can be seen as a result of a shift from institutional care to community care and normalization. This paper reviews available research, prevalence, service issues, experience from around the world, and relates to the situation in Israel. Jewish Law has been very progressive regarding the possibility of marriage between persons with ID (in contrast to American Law where historically this right has been denied, until recently. Recent research has shown that, in the case of such a union resulting in children, although they require some supervision, family, friends, and social welfare agencies have scrutinized these families so much they are in constant fear of their child being taken away. There is little information on the number of such cases and an overall dearth of information on the effects on the children, although one recent study from the U.K. has shown a varied picture of resilience and a close, warm relationship later on with the family and especially the mother.

  14. The state of the science of employment and economic self-sufficiency for people with intellectual and developmental disabilities.

    Science.gov (United States)

    Nord, Derek; Luecking, Richard; Mank, David; Kiernan, William; Wray, Christina

    2013-10-01

    Employment, career advancement, and financial independence are highly valued in the United States. As expectations, they are often instilled at a young age and incentivized throughout adulthood. Despite their importance, employment and economic sufficiency continue to be out of reach for most people with intellectual and developmental disabilities (IDD). Over the last quarter century, extensive research and effort has been committed to understanding and improving these phenomena. This paper summarizes this employment research base by reviewing the literature on the effectiveness of the current employment support system, employment-specific interventions, and the economics and cost benefits of employment for people with IDD. Recommendations and directions for future research are also presented.

  15. Emerging new practices in technology to support independent community access for people with intellectual and cognitive disabilities.

    Science.gov (United States)

    Stock, Steven E; Davies, Daniel K; Wehmeyer, Michael L; Lachapelle, Yves

    2011-01-01

    The concept of community access is a multidimensional term, which may involve issues related to physical access, knowledge and information, power and control, relationships and communications, advocacy, participation and quality of life [21]. This paper discusses historical and emerging practices and interventions related to physical access to community and community based information for individuals with cognitive disabilities such as intellectual disability, autism or traumatic brain injury. While much societal attention has been paid to features of independent community access for populations such as individuals with hearing, vision or physical disabilities, less attention has focused on independent community access for people with intellectual and other significant cognitive disabilities. Attitudes and actions by families and professional service communities are often mixed for some individuals in this population. The somewhat limited research base in these areas is explored, including a case study review and results from several promising feasibility studies. The paper concludes with comments concerning future prospects and recommendations for improving independent community access for persons with significant cognitive disabilities.

  16. THE ROLE OF SUPPORT GROUPS IN THE COOPERATION BETWEEN PARENTS OF PEOPLE WITH INTELLECTUAL DISABILITIES AND PROFESSIONAL STAFF

    Directory of Open Access Journals (Sweden)

    Metka NOVAK

    2014-09-01

    Full Text Available Introduction: One of the ways of building and developing a better cooperative relationship between parents of people with severe and profound intellectual disabilities and professional staff is the inclusion of parents in support groups for parents and staff in support groups for staff. Goal: To examine the correlation of the level of cooperative relationship between the parents of people with severe and profound intellectual disabilities and professional staff with the inclusion of parents in support groups for parents and staff in support groups for staff. Methodology: Respondents: parents (296 of people with severe and profound learning disabilities and staff (298 in five centres across Slovenia; Methods: descriptive statistics, test of homogeneity, the rankit method, one-way analysis of variance; Procedures: survey questionnaires for parents and staff. The data was processed using SPSS software for personal computers. Results: The difference between the variances of the groups (parent found is statistically significant (F = 6.16; p = 0.01. Staff included in support groups have a significantly lower level of cooperative relationship with parents (f=10; M = - 0.12 than staff not included in these groups (f = 191; M = 0.04. Conclusion:In contrast to theoretical findings the results indicated less successful cooperation for professional staff included in support groups. The results furthermore did not confirm any differences in the cooperative relationship of parents included in support groups and those who are not. We suggest an in-depth analysis of the workings of support groups.

  17. Long-term follow-up of behavioural treatment for primary encopresis in people with intellectual disability in the community.

    Science.gov (United States)

    Huntley, E; Smith, L

    1999-12-01

    Encopresis is a major problem in high-dependency fields such as intellectual disability. Little information is available with respect to either the prevalence or aetiology of encopresis, probably because it is widely regarded as part and parcel of the handicapping condition. Consequently, treatment reports are rare and confined to a small number of case studies. There is a dearth of long-term follow-up on the behavioural treatment of encopresis in the general population, and no long-term follow-up studies are available for the treatment of encopresis in intellectual disability. The present report provides follow-up data for nine out of 10 people with mainly severe intellectual disability who had received behavioural treatment for primary retentive or non-retentive encopresis between 5 and 17 years previously. Six out of the nine subjects for whom data were available were accident-free and a further two clients were very substantially improved. Interestingly, those whose former encopresis was retentive in nature maintained more successfully, despite the severity of their original impaction. The limitations of the present study are discussed.

  18. Global Initiative of the Special Olympics Movement for People with Intellectual Disabilities

    Directory of Open Access Journals (Sweden)

    Myśliwiec Andrzej

    2015-03-01

    Full Text Available The mission of the Special Olympics is to provide year-round sports training and competition in a variety (33 of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy, and participate in sharing of gifts and friendship with their families, other athletes, and their communities. The Special Olympics movement often goes beyond the sports competition formula. During the last few years, the movement has developed many new global initiatives, which expand its former sports activities. They include:

  19. Supporting End of Life Decision Making: Case Studies of Relational Closeness in Supported Decision Making for People with Severe or Profound Intellectual Disability

    Science.gov (United States)

    Watson, Joanne; Wilson, Erin; Hagiliassis, Nick

    2017-01-01

    Background: The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions.…

  20. Physical and Mental Health Status of Staff Working for People with Intellectual Disabilities in Taiwan: Measurement with the 36-Item Short-Form (SF-36) Health Survey

    Science.gov (United States)

    Lin, Jin-Ding; Lee, Tzong-Nan; Loh, Ching-Hui; Yen, Chia-Feng; Hsu, Shang-Wei; Wu, Jia-Ling; Tang, Chi-Chieh; Lin, Lan-Ping; Chu, Cordia M.; Wu, Sheng-Ru

    2009-01-01

    Little explicit attention has been given to the generic health profile of staff working for people with intellectual disability in institutions. This study aimed to provide a profile of physical and mental health of staff working in disability welfare institutions, and to examine the possible demographic and organizational factors that explain an…

  1. Development and validation of the Learning Disabilities Needs Assessment Tool (LDNAT), a HoNOS-based needs assessment tool for use with people with intellectual disability.

    Science.gov (United States)

    Painter, J; Trevithick, L; Hastings, R P; Ingham, B; Roy, A

    2016-12-01

    In meeting the needs of individuals with intellectual disabilities (ID) who access health services, a brief, holistic assessment of need is useful. This study outlines the development and testing of the Learning Disabilities Needs Assessment Tool (LDNAT), a tool intended for this purpose. An existing mental health (MH) tool was extended by a multidisciplinary group of ID practitioners. Additional scales were drafted to capture needs across six ID treatment domains that the group identified. LDNAT ratings were analysed for the following: item redundancy, relevance, construct validity and internal consistency (n = 1692); test-retest reliability (n = 27); and concurrent validity (n = 160). All LDNAT scales were deemed clinically relevant with little redundancy apparent. Principal component analysis indicated three components (developmental needs, challenging behaviour, MH and well-being). Internal consistency was good (Cronbach alpha 0.80). Individual item test-retest reliability was substantial-near perfect for 20 scales and slight-fair for three scales. Overall reliability was near perfect (intra-class correlation = 0.91). There were significant associations with five of six condition-specific measures, i.e. the Waisman Activities of Daily Living Scale (general ability/disability), Threshold Assessment Grid (risk), Behaviour Problems Inventory for Individuals with Intellectual Disabilities-Short Form (challenging behaviour) Social Communication Questionnaire (autism) and a bespoke physical health questionnaire. Additionally, the statistically significant correlations between these tools and the LDNAT components made sense clinically. There were no statistically significant correlations with the Psychiatric Assessment Schedules for Adults with Developmental Disabilities (a measure of MH symptoms in people with ID). The LDNAT had clinically utility when rating the needs of people with ID prior to condition-specific assessment(s). Analyses of internal

  2. An exploration of the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities.

    LENUS (Irish Health Repository)

    Ryan, Karen

    2010-09-01

    Research suggests that shortcomings exist in the provision of palliative care to people with intellectual disabilities. This mixed-methods study aimed to describe the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities. The sample was drawn from the population of one Health Service Executive area in Ireland. Staff from intellectual disability and palliative care services completed surveys and participated in focus group discussions. Three hundred and eighty-nine questionnaires were distributed and 16 focus groups were held. Fifty-nine per cent of palliative care staff and 67% of intellectual disability services staff had cared for someone with intellectual disability who had died but level of experience was low. Both palliative care and intellectual disability services staff lacked confidence in their ability to provide palliative care. Staff were challenged by perceived \\'differences\\' and \\'difficulties\\' in the provision of care. They endorsed a partnership approach to care but focus group discussions revealed that a shared desire to cooperate was insufficient to guarantee effective collaboration.

  3. General Practitioners' Perceptions on Clinical Management and Training Needs regarding the Healthcare of Community-Dwelling People with Intellectual Disability: A Preliminary Survey in Singapore.

    Science.gov (United States)

    Sajith, Sreedharan Geetha; Goh, Yen-Li; Wee, Joshua Marcus

    2017-11-01

    Studies worldwide indicate that people with intellectual disability have high risks of physical and mental morbidities, and poor quality of health care. This study was aimed at determining general practitioners' perceptions on barriers in clinical assessment and training needs with regard to the healthcare of community-dwelling people with intellectual disability. A survey questionnaire was developed specifically for the study through focus group discussions and a literature review. The study was conducted as a cross-sectional anonymous survey of private general practitioners practicing in Singapore. The survey contained questions on their experience and training needs in assessing and treating patients with intellectual disability. Forty-nine of the 272 questionnaires sent out were returned. The respondents were predominantly male general practitioners working in "solo" practices. For most general practitioners, the proportion of patients with intellectual disability ranged from 1% to 5%. Nearly 90% of general practitioners identified problems in communicating with such patients as an important barrier that affected the quality of assessment of their health conditions. Other barriers identified were behavioral issues and sensory impairments. Only one-third of the general practitioners were confident that they had sufficient knowledge of physical and mental health conditions related to patients with intellectual disability. Three-fourths of the general practitioners believed that further training in this area would be beneficial. Appropriate interventions to address barriers in assessment and management of patients with intellectual disability with further training for general practitioners may improve the standard of healthcare provided to this population group.

  4. Understanding Intellectual Disability through Rasopathies

    OpenAIRE

    Alvaro, San Martín; Rafael, Pagani Mario

    2014-01-01

    Intellectual disability, commonly known as mental retardation in the International Classification of Disease from World Health Organization, is the term that describes an intellectual and adaptive cognitive disability that begins in early life during the developmental period. Currently the term intellectual disability is the preferred one. Although our understanding of the physiological basis of learning and learning disability is poor, a general idea is that such condition is quite permanent...

  5. Sibling Relationships in Adolescence and Early Adulthood With People Who Have Intellectual Disability.

    Science.gov (United States)

    Floyd, Frank J; Costigan, Catherine L; Richardson, Shana S

    2016-09-01

    Cross-sectional (N = 106) and longitudinal (N = 35) samples of siblings (ages 11-38) reported on closeness and conflict in their relationships with sisters and brothers with intellectual disability. For closeness, confirmatory factor analysis (CFA) distinguished feelings of emotional closeness from reciprocal sharing behaviors for these siblings. Age effects and changes over time indicated increasing emotional closeness and a general reduction in conflict from adolescence to young adulthood, with stable reciprocal sharing. Cross-sectionally, closeness was greater when siblings were involved in caregiving, and conflict was less when siblings no longer co-resided. Sibling constellation features (sex, birth order, age spacing) had limited effects at this developmental period. Findings support a combination of life-span developmental change and enduring attachment in these sibling relationships.

  6. Do people with intellectual disability use Nintendo Wii when placed in their home as part of a physiotherapy program? An observational study.

    Science.gov (United States)

    Chung, Alison M J; Harvey, Lisa A; Hassett, Leanne M

    2016-01-01

    To examine how much, and in what way, Nintendo Wii™ (Wii) is used when prescribed as part of a home-physiotherapy program for people with intellectual disability. Twenty people with intellectual disability were recruited. The following parameters were recorded about play patterns over a 12-week period: frequency, duration, perceived exertion, play position, play mode, initiation of play and games from Wii Sports and Wii Fit Plus. Participants used the Wii for a median of 101 min per week (interquartile range [IQR]: 50-172) in weeks one and two across a median of three days per week (IQR: 3-4), decreasing down to a median of 35 min per week (IQR: 0-141) in weeks 11 and 12 across a median of one day per week (IQR: 0-3). Usage of the Wii drops off rapidly when it is placed in the homes of people with intellectual disability as part of a physiotherapy program. Implications for Rehabilitation Usage of the Nintendo Wii drops off rapidly when it is placed in the homes of people with intellectual disability and they are instructed to use it as part of a home physiotherapy program. Games commonly played include bowling and boxing in Wii Sport, and penguin slide, ski jump and tight rope walk in Wii Fit Plus. Physiotherapists should use person and family centred practice to ensure that Nintendo Wii is a suitable intervention for the person with an intellectual disability and provide support to encourage ongoing usage.

  7. Interpersonal Sources of Conflict in Young People with and without Mild to Moderate Intellectual Disabilities at Transition from Adolescence to Adulthood

    Science.gov (United States)

    Larkin, P.; Jahoda, A.; MacMahon, K.; Pert, C.

    2012-01-01

    Background: Interpersonal conflict is a source of stress and contributes to poor mental health in people with mild to moderate intellectual disabilities. Understanding the contexts in which conflict typically occurs can better equip services to help people with such difficulties. However, existing studies into the contexts of conflict have…

  8. No Matter How I Think, It Already Hurts: Self-Stigmatized Feelings and Face Concern of Chinese Caregivers of People with Intellectual Disabilities

    Science.gov (United States)

    Yang, Xue

    2015-01-01

    This study used mixed-methods design to explore internalized self-stigma among family caregivers (ISFC) of people with intellectual disability (ID) in China, where face culture and collective emotions are emphasized. A total of 120 primary caregivers of people with ID were assessed for ISFC, face concern and psychological distress at the survey…

  9. Why are their physical activity levels so low?: An overview of the literature into the facilitators and barriers to physical activity in people with intellectual disabilities

    NARCIS (Netherlands)

    Bossink, Leontien; van der Putten, Annette; Vlaskamp, Carla

    2016-01-01

    Aim: It is generally acknowledged that being physically active is important for people with intellectual disabilities (ID) because of the positive effects on physical and mental health. However, physical activity seems to be a minor part of the support provided to people with ID, especially in those

  10. Roles of General Practitioners in the Provision of Health Care Services for People with Intellectual Disabilities: A National Census in Taiwan

    Science.gov (United States)

    Lin, Jin-Ding; Hsu, Shang-Wei; Yen, Chia-Feng; Chou, Ying-Ting; Wu, Chia-Ling; Chu, Cordia M.; Loh, Ching-Hui

    2009-01-01

    Aims: The aims of the present study were to explore the perceptions of general practitioners (GPs) in the provision of health care services for people with intellectual disabilities and to analyse GPs' priorities in the delivery of health care services to this group of people in Taiwan. Methods: The study employed a cross-sectional design and was…

  11. A designated centre for people with disabilities operated by KARE, PROMOTING INCLUSION FOR PEOPLE WITH INTELLECTUAL DISABILITIES, Kildare

    LENUS (Irish Health Repository)

    Varley, J

    2011-11-17

    Effective chronic disease management (CDM) requires the ready availability and communication of accurate, clinical disease specific information. Using epilepsy as a probe into CDM, we report on the availability and reliability of clinical information in the primary care records of people with epilepsy (PWE). The medical records of 374 PWE from 53 general practices in the Mid-West region of Ireland were examined. Confirmation of an epilepsy diagnosis by a neurologist was documented for 132 (35%) patients. 282 (75%) patients had no documented evidence of receiving specialist neurology review while 149 (40%) had not been reviewed by their GP in the previous two years for their epilepsy. Significant variation in documentation of epilepsy specific information together with an inadequacy and inconsistency of existing epilepsy services was highlighted.

  12. The magic stone : a video game to improve communication skills of people with intellectual disabilities

    OpenAIRE

    Corrales Astorgano, Mario

    2016-01-01

    'The Magic Stone' is a video game whose main aim is to help people with Down syndrome to improve communication skills that have been affected due to their disability, especially those related with prosody. The interface of the video game includes a number of elements to motivate the users to practice and train their pronunciation. The usability tests of the system have reported high degrees of satisfaction of users and trainers. Perception tests have permitted to confirm that players improve ...

  13. Cell Phone Use by Adults with Intellectual Disabilities

    Science.gov (United States)

    Bryen, Diane Nelson; Carey, Allison; Friedman, Mark

    2007-01-01

    Although cell phone use has grown dramatically, there is a gap in cell phone access between people with disabilities and the general public. The importance of cell phone use among people with intellectual disabilities and studies about use of cell phones by adults with intellectual disabilities was described. Our goal was to determine the extent…

  14. Temporomandibular disorders in young people with an intellectual disability: prevalence of signs and symptoms.

    Science.gov (United States)

    Tanboga, I; Durhan, M A; Durmus, B; Marks, L A

    2014-12-01

    To assess the prevalence of signs and symptoms related to TMJ disorders in a group of young people with intelectual disability (ID) and a matched group of healthy adolescents. A group of 105 young Special Olympics (SO) athletes (ID group) aged from 14 to 25 years and a control group were examined for the presence or absence of signs and symptoms of TMD through interview and clinical examination. A total of 64 young people with ID (61%) had at least one sign of TMD compared to 41 (39%) of the individuals screened that was free of any TMD symptoms. A significantly higher prevalence of TMJ sounds (palpation and stethoscope), TMJ tenderness, maximum vertical opening, headaches were observed among SO athletes compared to the healthy control group (pdisabled patients and a possible cause of pain that should be examined more in detail. We suggest that oral screening in people with a mental disability should be modified by including basic TMJ examination parameters in order to allow better understanding of the pathological aspects so as to address effective preventive and therapeutic measures.

  15. From "Learning Disability to Intellectual Disability"--Perceptions of the Increasing Use of the Term "Intellectual Disability" in Learning Disability Policy, Research and Practice

    Science.gov (United States)

    Cluley, Victoria

    2018-01-01

    Background: The term "intellectual disability" is increasingly used to refer to people with learning disabilities in British learning disability policy, practice and research. This change is undoubtedly a reflection of the changing international context. The inclusion of the term "intellectual disability" has been particularly…

  16. Right to education: the school enrollment of people with intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Luiz Alberto David Araujo

    2015-12-01

    by the Brazilian Constitution, that has in equality one of its core values. From a newspaper report, denouncing the difficulty of people with disabilities to actualize their enrollment in the regular school system, this article analyzes the current constitutional configuration of rights to inclusion and education of that vulnerable group, pointing out the ways offered by the Brazilian legal system to guarantee and actualize these rights. Any damage caused by the refusal of the school enrollment, diffuse or individual, moral or material, are liable to repairing.

  17. Attentional processes in interactions between people with profound intellectual and multiple disabilities and direct support staff.

    Science.gov (United States)

    Hostyn, Ine; Ine, Hostyn; Neerinckx, Heleen; Heleen, Neerinckx; Maes, Bea; Bea, Maes

    2011-01-01

    Few studies have examined joint attention in interactions with persons with profound intellectual and multiple disabilities (PIMD), despite its important role in high-quality interaction. The purpose of this study is to describe the attention-directing behaviours of persons with PIMD and their direct support staff and the attention episodes resulting from their interactions, and to understand how these variables relate to each other. Video observations of 17 staff-client dyads were coded using partial interval recording. The results showed considerable variation across individuals and dyads. In general, persons with PIMD directed the attention of staff members infrequently. The staff members frequently directed their clients' attention towards a topic of interest but did not often use the tactile modality. Within the staff-client dyad, there was not much joint attention; however, shared attention episodes occurred frequently. Shared attention and joint attention are strongly correlated. A negative correlation was found between clients not using attention-directing behaviours and staff members using tactile methods to direct the attention, and joint attention episodes. This study presents both directions for future research and practical implications. Copyright © 2010 Elsevier Ltd. All rights reserved.

  18. Epilepsy and Intellectual and Developmental Disabilities

    Science.gov (United States)

    Oguni, Hirokazu

    2013-01-01

    The co-occurrence of epilepsy in people with intellectual disabilities (ID) and other developmental disabilities (DD) has received attention because it has a significant negative impact on health, well-being, and quality of life. The current research investigating the frequency and form of epilepsy in children with ID and DD is reviewed, with…

  19. Why do seizures occur when they do? Situations perceived to be associated with increased or decreased seizure likelihood in people withepilepsy and intellectual disability

    OpenAIRE

    Illingworth, Josephine L; Watson, Peter; Ring, Howard Anton

    2014-01-01

    Seizure precipitants are commonly reported in the general population of people with epilepsy. However, there has been little research in this area in people with epilepsy and intellectual disability (ID). We conducted a survey of the situations associated with increased or decreased seizure likelihood in this population. The aim of the research was to identify situations of increased seizure likelihood (SISLs) and situations of decreased seizure likelihood (SDSLs) reported by carers of people...

  20. INFLUENCE OF TRADITIONAL DANCE TRAINING PROGRAMS ON DYNAMIC BALANCE OF PEOPLE WITH INTELLECTUAL DISABILITY: A SHORT REVIEW

    Directory of Open Access Journals (Sweden)

    K. Tsimaras Vasileios

    2015-05-01

    Full Text Available Traditional dance is gaining popularity as an intervention choice for improving poor balance ability of people with intellectual disability (ID. Balance improvement for individuals with ID through dance provides opportunities for participation in sport activities and promotes independent living. This short review provides in brief research evidence of dynamic balance improvement as measured by means of a balance deck in duration of 30, 45, and 60 sec intervals, highlighting the need to incorporate traditional dance programs in Physical Education (PE lessons applied on participants with ID. Overall, traditional dances provide emotional and cognitive interaction that has a direct positive effect on quality of life and successful motor performance of individuals with ID.

  1. INFLUENCE OF TRADITIONAL DANCE TRAINING PROGRAMS ON DYNAMIC BALANCE OF PEOPLE WITH INTELLECTUAL DISABILITY: A SHORT REVIEW

    Directory of Open Access Journals (Sweden)

    Vasileios K. Tsimaras

    2015-04-01

    Full Text Available Traditional dance is gaining popularity as an intervention choice for improving poor balance ability of people with intellectual disability (ID. Balance improvement for individuals with ID through dance provides opportunities for participation in sport activities and promotes independent living. This short review provides in brief research evidence of dynamic balance improvement as measured by means of a balance deck in duration of 30, 45, and 60 sec intervals, highlighting the need to incorporate traditional dance programs in Physical Education (PE lessons applied on participants with ID. Overall, traditional dances provide emotional and cognitive interaction that has a direct positive effect on quality of life and successful motor performance of individuals with ID.

  2. Influence of mobbing (workplace bullying) on depressive symptoms: a longitudinal study among employees working with people with intellectual disabilities.

    Science.gov (United States)

    Figueiredo-Ferraz, H; Gil-Monte, P R; Olivares-Faúndez, V E

    2015-01-01

    The problem of mobbing has attracted a great deal of attention over the past few years. This concern has increased the study of the phenomena, which has resulted in many scientific publications. Mobbing has been characterised as an emerging risk at work. The aim of this longitudinal study was to analyse the influence of mobbing on depressive symptoms in a sample of employees working with people with intellectual disabilities (ID). The sample consisted of 372 Spanish employees working with people with ID at 61 job centres in the Valencian Community (Spain). Seventy-nine (21.2%) participants were men, and 293 were (78.8%) women. Mobbing was evaluated by the Mobbing-UNIPSICO scale, and depressive symptoms were measured using the Zung Self Rating Depression Scale. Using analyses of variance (anova), we tested the differences in depressive symptoms according to the mobbing criteria indicated by Leymann, that is, frequency and duration at Time 1 and Time 2. Employees who met the mobbing criteria: frequency (at least once a week) and duration (at least 6 months) at the two study times presented significantly higher levels of depressive symptoms than employees who met mobbing criteria at Time 1, but did not meet any criteria for mobbing at Time 2, and employees who did not meet any criteria for mobbing at Time 1 or Time 2. We conclude that permanence of mobbing from Time 1 to Time 2 increases depressive symptoms. © 2013 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  3. Protection, Participation and Protection through Participation: Young People with Intellectual Disabilities and Decision Making in the Family Context

    Science.gov (United States)

    Saaltink, R.; MacKinnon, G.; Owen, F.; Tardif-Williams, C.

    2012-01-01

    Background: Research suggests that persons with intellectual disabilities (ID) are expected to be more compliant than persons without disabilities and that expectations for compliance begin in childhood. No study, however, seems yet to have included a primary focus on the participatory rights, or rights to express opinions, desires and preferences…

  4. Shifts in care approaches and attitudes at the end of life of people with intellectual disabilities: from activating towards caring and letting go.

    NARCIS (Netherlands)

    Veer, A.J.E. de; Bekkema, N.; Hertogh, C.M.P.M.; Francke, A.L.

    2015-01-01

    Background: The focus in the care for people with intellectual disabilities (ID) is predominantly on self-reliance and participation. An increasing number of them will have life-limiting illnesses and will need palliative care, that requires another care approach. Aims: The aim is to describe

  5. What's at Stake in the Lives of People with Intellectual Disability? Part I: The Power of Naming, Defining, Diagnosing, Classifying, and Planning Supports

    Science.gov (United States)

    Schalock, Robert L.; Luckasson, Ruth

    2013-01-01

    This article focuses on the power of naming, defining, diagnosing, classifying, and planning supports for people with intellectual disability. The article summarizes current thinking regarding these five functions, states the essential question addressed by the respective function, and provides an overview of the high stakes involved for people…

  6. Personalization, Self-Advocacy and Inclusion: An Evaluation of Parent-Initiated Supported Living Schemes for People with Intellectual and Developmental Disabilities in the Netherlands

    Science.gov (United States)

    Reindl, Marie-Sol; Waltz, Mitzi; Schippers, Alice

    2016-01-01

    This study focused on parent-initiated supported living schemes in the South of the Netherlands and the ability of these living schemes to enhance participation, choice, autonomy and self-advocacy for people with intellectual or developmental disabilities through personalized planning, support and care. Based on in-depth interviews with tenants,…

  7. Changes on Quality of Life, Self-Efficacy and Social Support for Activities and Physical Fitness in People with Intellectual Disabilities through Multimodal Intervention

    Science.gov (United States)

    Pérez-Cruzado, David; Cuesta-Vargas, Antonio I.

    2016-01-01

    Background: People with intellectual disability have poor levels of physical activity, quality of life, fitness condition and self-efficacy and social support when they want to undertake physical activity so it is very important to improve these parameters in this population. Method: A prospective study was conducted. Data were measured before and…

  8. Issues in the Medication Management Process in People Who Have Intellectual and Developmental Disabilities: A Qualitative Study of the Caregivers' Perspective

    Science.gov (United States)

    Erickson, Steven R.; Salgado, Teresa M.; Tian, Xi

    2016-01-01

    People who have intellectual and developmental disabilities (IDD) often rely on caregivers to assist in the medication management process. The aim of this study was to learn from caregivers, who are either family or support staff, what major issues arise throughout the process of managing medication and how these might be addressed. Problems…

  9. Direct Support Professionals and Reversed Integration of People With Intellectual Disabilities : Impact of Attitudes, Perceived Social Norms, and Meta-Evaluations

    NARCIS (Netherlands)

    Venema, Eleonora; Otten, Sabine; Vlaskamp, Carla

    Direct support professionals (DSPs) play an important role in the process of integration of people with intellectual disabilities. Nevertheless, little is currently known about what determines the level of effort exerted by DSPs to enable the social integration of their clients. The aim of this

  10. The Employers' Perspective on Barriers and Facilitators to Employment of People with Intellectual Disability: A Differential Mixed-Method Approach

    Science.gov (United States)

    Kocman, Andreas; Fischer, Linda; Weber, Germain

    2018-01-01

    Background: Obtaining employment is among the most important ambitions of people with intellectual disability. Progress towards comprehensive inclusive employment is hampered by numerous barriers. Limited research is available on these barriers and strategies to overcome them. Method: A mixed method approach in a sample of 30 HR-managers was used…

  11. "My Great Hope in Life Is to Have a House, a Family and a Daughter": Relationships and Sexuality in Intellectually Disabled People

    Science.gov (United States)

    Rojas, Susana; Haya, Ignacio; Lázaro-Visa, Susana

    2016-01-01

    This study starts from the premise that we are sexual beings, and therefore, sexuality is part of our lives and defines us as human beings. This is also true with regard to intellectually disabled people. Within the framework of broader qualitative research carried out in Spain, some partial results of an ongoing study aimed at finding out what a…

  12. The use of surveillance technology in residential facilities for people with dementia or intellectual disabilities: a study among nurses and support staff.

    NARCIS (Netherlands)

    Niemeijer, A.R.; Depla, M.; Hertogh, C.; Frederiks, B.; Francke, A.

    2014-01-01

    Background: The use of surveillance technology in residential care facilities for people with dementia or intellectual disabilities is often promoted both as a solution to understaffing and as a means to increasing clients' autonomy. But there are fears that such use might attenuate the care

  13. Restriction on Restraints in the Care for People With Intellectual Disabilities in the Netherlands: Lessons Learned from Australia, UK, and United States

    NARCIS (Netherlands)

    Romijn, A.; Frederiks, B.J.M.

    2012-01-01

    In the Netherlands, physical/mechanical restraints in the care provided to people with intellectual disabilities are still in use, with the case of "Brandon" being a recent and illustrative example. The public debate that this case triggered raised questions concerning the policy proposal in the

  14. Evaluating a staff training program on the interaction between staff and people with intellectual disability and challenging behaviour : An observational study

    NARCIS (Netherlands)

    Embregts, P.J.C.M.; Zijlmans, L.; Gerits, L.; Bosman, A.M.T.

    2018-01-01

    Background: The aim of this study was to evaluate the effects of a training program focusing on improvement of emotional intelligence (EI) and support staffs’ awareness of their behaviour towards people with an intellectual disability based on interactional patterns. The support provided regarding

  15. Extrinsic High-Effort and Low-Reward Conditions at Work among Institutional Staff Caring for People with Intellectual Disabilities in Taiwan

    Science.gov (United States)

    Lee, Tzong-Nan; Lin, Jin-Ding; Yen, Chia-Feng; Loh, Ching-Hui; Hsu, Shang-Wei; Tang, Chi-Chieh; Wu, Jia-Ling; Fang, Wen-Hui; Chu, Cordia M.

    2009-01-01

    The purposes of the present study were to determine whether extrinsic high-effort/low-reward conditions at work are associated with personal characteristics and the organizational environments. A cross-sectional survey was conducted (76.7% response rate, N = 1243) by recruiting the staff caring for people with intellectual disabilities of Taiwan…

  16. Assessment of Drug-Associated Extrapyramidal Symptoms in People With Intellectual Disability : A Comparison of an Informant-Based Scale With Clinical Rating Scales

    NARCIS (Netherlands)

    de Kuijper, Gerda M.; Hoekstra, Pieter J.

    2016-01-01

    Drug-associated extrapyramidal symptoms (EPS) in people with intellectual disability (ID) may be difficult to recognize, and clinicians' assessments may be hampered by lack of patients' capacities to adequately cooperate and by lack of reliable instruments to measure EPS in this population.

  17. Investigating Burnout and Psychological Well-Being of Staff Working with People with Intellectual Disabilities and Challenging Behaviour: The Role of Personality

    Science.gov (United States)

    Chung, Man Cheung; Harding, Carly

    2009-01-01

    Background: The present research extended previous research by broadening the dimensions of personality traits, and focusing on burnout and psychological well-being among staff working with people with intellectual disabilities and challenging behaviour. Methods: This is a cross-sectional survey in which 103 staff completed questionnaires…

  18. "What's Going to Happen When We're Gone?" Family Caregiving Capacity for Older People with an Intellectual Disability in Ireland

    Science.gov (United States)

    Brennan, Damien; Murphy, Rebecca; McCallion, Philip; McCarron, Mary

    2018-01-01

    Background: Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, deinstitutionalization and policy prioritization of the family as the principal care provider, presents new challenges to care sustainability. Method: A qualitative study design was employed, entailing focus groups and…

  19. Schooling of young and adults people with intellectual disabilities: considerations on research dissertations and theses in the period 1988 to 2008

    Directory of Open Access Journals (Sweden)

    Jéssica de Brito

    2013-01-01

    Full Text Available The objective of this study was to investigate the scientific production on the theme of youth and adults with intellectual disabilities, found in dissertations and theses in the period 1988 to 2008. For this, we carried out the survey on the bank of the CAPES, by searching with keywords specific to contemplate the education of youth and adults, special education, and intellectual disability and mental. We selected ten productions distributed in six Higher Education Institutions (HEI, the majority coming from public higher education institutions, for the Graduate Program in Education, and defended in the 2000s. Most studies focused on literacy and signaled the need for improvement of teaching practices, as well as the importance of the interaction of young people and adults with intellectual disabilities with their teachers. It was also found that there are few studies relevant to this population in question, pointing to a field of knowledge to be properly understood.

  20. The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals: evidence from a mixed-methods study.

    Science.gov (United States)

    Tuffrey-Wijne, Irene; Goulding, Lucy; Gordon, Vanessa; Abraham, Elisabeth; Giatras, Nikoletta; Edwards, Christine; Gillard, Steve; Hollins, Sheila

    2014-09-24

    There has been evidence in recent years that people with intellectual disabilities in acute hospitals are at risk of preventable deterioration due to failures of the healthcare services to implement the reasonable adjustments they need. The aim of this paper is to explore the challenges in monitoring and preventing patient safety incidents involving people with intellectual disabilities, to describe patient safety issues faced by patients with intellectual disabilities in NHS acute hospitals, and investigate underlying contributory factors. This was a 21-month mixed-method study involving interviews, questionnaires, observation and monitoring of incident reports to assess the implementation of recommendations designed to improve care provided for patients with intellectual disabilities and explore the factors that compromise or promote patient safety. Six acute NHS Trusts in England took part. Data collection included: questionnaires to clinical hospital staff (n = 990); questionnaires to carers (n = 88); interviews with: hospital staff including senior managers, nurses and doctors (n = 68) and carers (n = 37); observation of in-patients with intellectual disabilities (n = 8); monitoring of incident reports (n = 272) and complaints involving people with intellectual disabilities. Staff did not always readily identify patient safety issues or report them. Incident reports focused mostly around events causing immediate or potential physical harm, such as falls. Hospitals lacked effective systems for identifying patients with intellectual disabilities within their service, making monitoring safety incidents for this group difficult.The safety issues described by the participants were mostly related to delays and omissions of care, in particular: inadequate provision of basic nursing care, misdiagnosis, delayed investigations and treatment, and non-treatment decisions and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders. The events leading to avoidable harm

  1. Training needs of nurses and social workers in the end-of-life care for people with intellectual disabilities: a national survey.

    Science.gov (United States)

    Bekkema, Nienke; de Veer, Anke J E; Albers, Gwenda; Hertogh, Cees M P M; Onwuteaka-Philipsen, Bregje D; Francke, Anneke L

    2014-04-01

    Nurses and social workers caring for people with intellectual disabilities are increasingly confronted with clients in need of end-of-life care. Previous studies, however, suggest that professionals in intellectual disability care services lack knowledge and experience concerning end-of-life care. Moreover, the proportion of nurses within the staff of intellectual disability services has declined in recent years, while the proportion of social workers has increased, which may have consequences for the quality of end-of-life care. To gain insight into the quality of end-of-life care, past vocational training, training needs and expert consultation opportunities of nurses and social workers working in intellectual disability care services. Survey questionnaire study conducted in the Netherlands. Intellectual disability care services. The study sample was recruited from an existing nationally representative research panel of care professionals. In 2011, all 181 nurses and social workers in the research panel who worked in intellectual disability care services were sent our survey questionnaire. Postal survey addressing education, views and needs regarding end-of-life care. The response was 71.8%. Respondents positively evaluated the quality of end-of-life care. However, most respondents felt inadequately trained in end-of-life care issues. Nurses had received more training in end-of-life care and had fewer training needs than social workers. Respondents wished for additional training, especially in supporting clients in dealing with the impending death and farewell process. Half of the respondents were unaware of the availability of external consultation facilities. This study shows that although nurses and social workers positively appraise the quality of end-of-life care for people with intellectual disabilities, the majority feel inadequately trained to provide good end-of-life care. As the number of people with intellectual disability in need of end-of-life care

  2. Cohort profile: a data linkage cohort to examine health service profiles of people with intellectual disability in New South Wales, Australia.

    Science.gov (United States)

    Reppermund, Simone; Srasuebkul, Preeyaporn; Heintze, Theresa; Reeve, Rebecca; Dean, Kimberlie; Emerson, Eric; Coyne, David; Snoyman, Phillip; Baldry, Eileen; Dowse, Leanne; Szanto, Tracey; Sara, Grant; Florio, Tony; Trollor, Julian N

    2017-04-12

    People with intellectual disability are a minority group who experience poorer physical and mental health than the general population and have difficulty accessing healthcare services. There is lack of knowledge about healthcare service needs and gaps experienced by people with intellectual disability. This study aims to interrogate a large linked administrative data set containing hospital admissions, presentations to emergency departments (ED) and mortality data to provide evidence to inform the development of improved health and mental health services for this population. A retrospective cohort of people with intellectual disability (n=51 452) from New South Wales (NSW), Australia, to explore health and mental health profiles, mortality, pattern of health service use and associated costs between 2005 and 2013. The cohort is drawn from: the Disability Services Minimum Data Set; Admitted Patients Data Collection; Emergency Department Data Collection, Australian Bureau of Statistics Death Registry and Registry of Births, Deaths and Marriages. Mental health service usage among those with intellectual disability will be compared to a cohort of people who used mental health services (n=1 073 139) and service usage other than for mental health will be compared with published data from the general population. The median age of the cohort was 24 at the time of the last hospital admission and 21 at the last ED presentation. The cohort has a higher proportion of men than women and accounts for 0.6% of the NSW population in 2011. Over 70% had up to 5 ED presentations and hospitalisations between 2005 and 2012. A high proportion of people with intellectual disability live in the most disadvantaged neighbourhoods. Results will be used to inform the development of more responsive healthcare, including improved interactions between health, social and disability supports. More generally, the results will assist the development of more inclusive policy frameworks for people

  3. A Study on the Efficacy of the Structuring of Support on Professional Training for Young People with Intellectual Disabilities

    Directory of Open Access Journals (Sweden)

    Elías VIVED CONTE

    2017-01-01

    Full Text Available In the context of an innovative teaching project approved by the Government of Aragon and the University of Zaragoza a study on professional training for young people with intellectual disabilities (ID was developed. The objective was to investigate the support system and to check the effectiveness of a design based on sources of natural and professional support. 9 young people with DI took part together with diverse support staff –parents, volunteers, university students through a service learning experience, professionals, adults with ID–. The theoretical bases of the project were linked to independent life projects, the supported employment and the supports model. The methodological references were the mediational teaching approach and cooperative learning. As evaluation tools, the Adaptive Skills Inventory (CALS, the questionnaire of social interaction skills (CHIS and the questionnaires of satisfaction were used. The results indicate a high achievement regarding the acquisition of skills by the participants,as well as a high degree of satisfaction from the experience. Despite several limitations present in our study, our results support the desirability of establishing new designs that enhance the effectiveness of the professional training of young people with DI and promote social and labor availability in inclusive environments.

  4. The Relationship Between Problem-Solving Ability and Self-Harm Amongst People with Mild Intellectual Disabilities.

    Science.gov (United States)

    Rees, Joanna; Langdon, Peter E

    2016-07-01

    The purpose of this study was to investigate the relationship between depression, hopelessness, problem-solving ability and self-harming behaviours amongst people with mild intellectual disabilities (IDs). Thirty-six people with mild IDs (77.9% women, Mage  = 31.77, SD = 10.73, MIQ  = 62.65, SD = 5.74) who had a history of self-harm were recruited. Participants were asked to complete measures of depression, hopelessness and problem-solving ability. Cutting was most frequently observed, and depression was prevalent amongst the sample. There was a significant positive relationship between depression and hopelessness, while there was no significant relationship between self-harm and depression or hopelessness. Problem-solving ability explained 15% of the variance in self-harm scores. Problem-solving ability appears to be associated with self-harming behaviours in people with mild IDs. © 2015 John Wiley & Sons Ltd.

  5. An ecological approach to seeking and utilising the views of young people with intellectual disabilities in transition planning.

    Science.gov (United States)

    Small, Neil; Raghavan, Raghu; Pawson, Nicole

    2013-12-01

    Transition planning using a person-centred approach has, in the main, failed to shape service provision. We offer an alternative based on an ecological understanding of human development linked to public health approaches that prioritise whole system planning. A total of 43 young people with intellectual disabilities, in Bradford, England, who were approaching transition from school or college were recruited to a qualitative study. Their ethnic breakdown was as follows: 16 white British, 24 Pakistani, 2 Bangladeshi and 1 Black African. Each young person was interviewed twice, at recruitment and a year later, to observe any changes in their social networks during transition. Interviews were undertaken with a semi-structured interview schedule and with the pictorial approach of Talking Mats. Both the networks the young people live within, and their sense of what the future might hold for them, are described and linked to Bronfenbrenner's ecological model of human development. The importance of the family and school is emphasised, as is the absence of engagement in leisure activities and work. Transition planning needs to start with mapping the systems individuals live within, areas of strength should be supported and parts of the system, which are not fit for purpose for these young people, should be prioritised for interventions.

  6. Using personal goal setting to promote the social inclusion of people with intellectual disability living in supported accommodation.

    Science.gov (United States)

    McConkey, R; Collins, S

    2010-02-01

    The social exclusion of persons with intellectual disability is more marked in congregated than in individualised supported accommodation. Goal setting was used as a means of increasing individuals' choices and engaging support staff in personalised planning. Method People living in four different housing and support options were invited to identify up to three 'social inclusion' goals they wanted to achieve in the coming months. Nine months later, a review was undertaken to see if their goals had been attained and also to identify what had helped or hindered individuals in doing this. The goal selection was then repeated and reviewed again after a further 9 months. Results The most commonly chosen goals were around social activities with other people and over half the participants were reported to have attained at least one of their goals within 9 months, particularly those in supported living arrangements that had greater hours of individual staff support. In the second 9-month period, fewer people chose goals, although the same proportion as before were successful. The main reason given for goal attainment was the information and support provided by staff. Conclusions Goal setting seems a suitable way of promoting social inclusion as it can be tailored to the needs and aspirations of individuals, although extra efforts may be needed to implement and sustain it with staff across all accommodation options.

  7. Tobacco and alcohol-related interventions for people with mild/moderate intellectual disabilities: a systematic review of the literature.

    Science.gov (United States)

    Kerr, S; Lawrence, M; Darbyshire, C; Middleton, A R; Fitzsimmons, L

    2013-05-01

    The behavioural determinants of health among people with mild/moderate intellectual disabilities (ID) are of increasing concern. With the closure of long-stay institutions, more people with ID are living in the community. As they lead more ordinary and less restricted lives, people with ID may be exposed to social and environmental pressures that encourage them to adopt behaviours that impact negatively on their health. Levels of smoking and alcohol consumption in this client group are of particular concern. We undertook a mixed method review of the literature, aiming to assess the Feasibility, Appropriateness, Meaningfulness and Effectiveness (FAME) of interventions designed to address the use of tobacco and/or alcohol in people with mild/moderate ID. Key electronic databases were searched (e.g., Medline, Cochrane Register of Controlled Trials, PsycINFO) from 1996 to 2011. The search was developed using appropriate subject headings and key words (e.g., intellectual disability, tobacco use, alcohol drinking, health promotion). On completion of the database searches, inclusion/exclusion criteria, based on an adaptation of the PICO framework (Population, Intervention, Comparison, Outcomes), were applied. Methodological quality was assessed using a seven-point rating scale. Database searches identified 501 unique records, of which nine satisfied the inclusion criteria. Four focused on tobacco, three on alcohol and two on both tobacco and alcohol. Located in the U.K., the U.S.A. and Australia, the studies aimed to increase knowledge levels and/or change behaviour (e.g., to encourage smoking cessation). One was a randomised controlled trial, one a quasi-experiment and the others were before and after studies and/or case studies. Methodological quality was poor or moderate. The combined studies had a sample size of 341, with ages ranging from 14 to 54 years. The interventions were delivered by professionals (e.g., in health, social care, education) during sessions that

  8. The experiences and support needs of people with intellectual disabilities who identify as LGBT: A review of the literature.

    Science.gov (United States)

    McCann, Edward; Lee, Regina; Brown, Michael

    2016-10-01

    People who identify as lesbian, gay, bisexual and transgender (LGBT) can face many challenges in society including accessing education, care and support appropriate to individual needs. However, there is a growing and evolving evidence base about the specific needs of people with intellectual disabilities (ID) in this regard. The aim of this review was to explore the experiences of people with ID who identified as LGBT through an examination of studies that addressed their views and highlighted specific issues, concerns and service responses. A comprehensive search of relevant databases from February 1995 to February 2015 was conducted. Studies were identified that met specific criteria that included: empirical peer reviewed studies, the use of recognised research methods and focused on people with ID whom identified as LGBT. The search yielded 161 papers in total. The search was narrowed and 37 papers were screened using rigorous inclusion and exclusion criteria. Finally, 14 papers were considered suitable for the review. The data were analysed and key themes identified that included accessing health services, gender and sexual identity, attitudes of people with ID regarding their LGBT status, and education, supports and therapeutic interventions. There is a need for service providers and carers to be more responsive to the concerns of people with ID who identify as LGBT to improve their health and well-being by reducing stigma and discrimination and by increasing awareness of their care and support needs. The implications are discussed in terms of policy, education, research and practice developments. Copyright © 2016 Elsevier Ltd. All rights reserved.

  9. Understanding intellectual disability through RASopathies.

    Science.gov (United States)

    San Martín, Alvaro; Pagani, Mario Rafael

    2014-01-01

    Intellectual disability, commonly known as mental retardation in the International Classification of Disease from World Health Organization, is the term that describes an intellectual and adaptive cognitive disability that begins in early life during the developmental period. Currently the term intellectual disability is the preferred one. Although our understanding of the physiological basis of learning and learning disability is poor, a general idea is that such condition is quite permanent. However, investigations in animal models suggest that learning disability can be functional in nature and as such reversible through pharmacology or appropriate learning paradigms. A fraction of the cases of intellectual disability is caused by point mutations or deletions in genes that encode for proteins of the RAS/MAP kinase signaling pathway known as RASopathies. Here we examined the current understanding of the molecular mechanisms involved in this group of genetic disorders focusing in studies which provide evidence that intellectual disability is potentially treatable and curable. The evidence presented supports the idea that with the appropriate understanding of the molecular mechanisms involved, intellectual disability could be treated pharmacologically and perhaps through specific mechanistic-based teaching strategies. Copyright © 2014 Elsevier Ltd. All rights reserved.

  10. The barriers to and enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study.

    Science.gov (United States)

    Tuffrey-Wijne, Irene; Goulding, Lucy; Giatras, Nikoletta; Abraham, Elisabeth; Gillard, Steve; White, Sarah; Edwards, Christine; Hollins, Sheila

    2014-04-16

    To identify the factors that promote and compromise the implementation of reasonably adjusted healthcare services for patients with intellectual disabilities in acute National Health Service (NHS) hospitals. A mixed-methods study involving interviews, questionnaires and participant observation (July 2011-March 2013). Six acute NHS hospital trusts in England. Reasonable adjustments for people with intellectual disabilities were identified through the literature. Data were collected on implementation and staff understanding of these adjustments. Data collected included staff questionnaires (n=990), staff interviews (n=68), interviews with adults with intellectual disabilities (n=33), questionnaires (n=88) and interviews (n=37) with carers of patients with intellectual disabilities, and expert panel discussions (n=42). Hospital strategies that supported implementation of reasonable adjustments did not reliably translate into consistent provision of such adjustments. Good practice often depended on the knowledge, understanding and flexibility of individual staff and teams, leading to the delivery of reasonable adjustments being haphazard throughout the organisation. Major barriers included: lack of effective systems for identifying and flagging patients with intellectual disabilities, lack of staff understanding of the reasonable adjustments that may be needed, lack of clear lines of responsibility and accountability for implementing reasonable adjustments, and lack of allocation of additional funding and resources. Key enablers were the Intellectual Disability Liaison Nurse and the ward manager. The evidence suggests that ward culture, staff attitudes and staff knowledge are crucial in ensuring that hospital services are accessible to vulnerable patients. The authors suggest that flagging the need for specific reasonable adjustments, rather than the vulnerable condition itself, may address some of the barriers. Further research is recommended that describes and

  11. Assumptions of Decision-Making Capacity: The Role Supporter Attitudes Play in the Realisation of Article 12 for People with Severe or Profound Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Joanne Watson

    2016-02-01

    Full Text Available The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures to provide access by persons with disability to the support they may require in exercising their legal capacity”. The Convention promotes supported decision-making as one such measure. Although Australia ratified the UNCRPD in 2008, it retains an interpretative declaration in relation to Article 12 (2, 3, 4, allowing for the use of substituted decision-making in situations where a person is assessed as having no or limited decision-making capacity. Such an outcome is common for people with severe or profound intellectual disability because the assessments they are subjected to are focused on their cognition and generally fail to take into account the interdependent nature of human decision-making. This paper argues that Australia’s interpretative declaration is not in the spirit of the Convention nor the social model of disability on which it is based. It starts from the premise that the intention of Article 12 is to be inclusive of all signatory nations’ citizens, including those with severe or profound cognitive disability. From this premise, arises a practical need to understand how supported decision-making can be used with this group. Drawing from evidence from an empirical study with five people with severe or profound intellectual disability, this paper provides a rare glimpse on what supported decision-making can look like for people with severe or profound intellectual disability. Additionally, it describes the importance of

  12. Test-retest reliability, smallest real difference and concurrent validity of six different balance tests on young people with mild to moderate intellectual disability.

    Science.gov (United States)

    Blomqvist, Sven; Wester, Anita; Sundelin, Gunnevi; Rehn, Börje

    2012-12-01

    Some studies have reported that people with intellectual disability may have reduced balance ability compared with the population in general. However, none of these studies involved adolescents, and the reliability and validity of balance tests in this population are not known. The purpose of this study was to examine the reliability of six different balance tests and to investigate their concurrent validity. Test-retest reliability assessment. All subjects were recruited from a special school for people with intellectual disability in Bollnäs, Sweden. Eighty-nine adolescents (35 females and 54 males) with mild to moderate intellectual disability with a mean age of 18 years (range 16 to 20 years). All subjects followed the same test protocol on two occasions within an 11-day period. Balance test performances. Intraclass correlation coefficients greater than 0.80 were achieved for four of the balance tests: Extended Timed Up and Go Test, Modified Functional Reach Test, One-leg Stance Test and Force Platform Test. The smallest real differences ranged from 12% to 40%; less than 20% is considered to be low. Concurrent validity among these balance tests varied between no and low correlation. The results indicate that these tests could be used to evaluate changes in balance ability over time in people with mild to moderate intellectual disability. The low concurrent validity illustrates the importance of knowing more about the influence of various sensory subsystems that are significant for balance among adolescents with intellectual disability. Copyright © 2011 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved.

  13. Physical therapy interventions for gross motor skills in people with an intellectual disability aged 6 years and over: a systematic review.

    Science.gov (United States)

    Hocking, Judith; McNeil, Julian; Campbell, Jared

    2016-12-01

    The systematic review was undertaken to investigate the effectiveness of physical therapy interventions for improving gross motor skills (GMSs) in people with an intellectual disability aged 6 years and older. There is a lack of physical therapy research for GMSs in this population, and no prior systematic review. People with an intellectual disability may require specific teaching approaches within therapy interventions to accommodate their cognitive and learning needs. People with an intellectual disability who suffer from GMS deficits can benefit from physical therapy to help improve their GMSs. Data sources were PubMed, CINAHL, Embase, and ProQuest. Reference lists of relevant identified articles were also hand searched. Papers published in English from 1 January 2008 to 22 October 2014 were considered for inclusion. This start date was chosen to reflect the tenets of the United Nations Convention on the Rights of Persons with Disabilities which was ratified in 2008.Eligible study designs for inclusion were randomized controlled trial (RCT), pseudo-RCT, repeated measures, and case report. Overall, 887 potential articles were identified, of which 42 were retrieved for full-text review, and seven were finally included. Critical appraisal was independently conducted by two reviewers using the Joanna Briggs Institute appraisal checklists; no articles were excluded following critical appraisal. Data extraction was performed using Joanna Briggs Institute Meta-Analysis of Statistics Assessment and Review Instrument data extraction instruments. High heterogeneity between the studies precluded meta-analysis of the results; a narrative synthesis was completed instead. Two RCTs, two pseudo-RCTs, two repeated measures studies, and one case report were included. Studies varied in regard to participants' intellectual disability, and the clinical interventions used. Interventions were well tolerated with negligible adverse effects. Significant improvements were reported for

  14. Relationship between individual quality of life and family quality of life for people with intellectual disability living in Italy.

    Science.gov (United States)

    Bertelli, M; Bianco, A; Rossi, M; Scuticchio, D; Brown, I

    2011-12-01

    There is substantial literature investigating quality of life (QoL) of individuals with intellectual disability (ID). QoL of families of people with ID is emerging as an important field of research. Despite this, there is a lack of studies regarding their relationship. The present paper aimed to study the relationship between QoL scores of individuals with ID and members of their families. Twenty-seven parents or relatives of 27 adults with ID were recruited by four different research centres across Tuscany (Italy) to be interviewed through the Italian adaptation of the Family Quality of Life Survey - 2006 (FQoLS-2006), a tool developed for use in a multiple-country study on family QoL. The FQoLS-2006 was translated and adapted to Italian through three revisions. The last was submitted to the authors of the original version, who also maintain an electronic data file and data archive for statistical evaluations in various countries. QoL of persons with ID was assessed through the administration of the Quality of Life - Instrument Package. QoL scores were analysed to describe population characteristics and to examine the relationships among measures of individual and family QoL using correlations (Pearson and Spearman). Findings showed that family ratings of QoL were generally low. Families interviewed reported a low level of QoL in 'Support from Others' and 'Community Interaction', while 'Family Relationships' and 'Health of the Family' rated higher. For individual QoL, individuals had the lowest scores in the area of 'Spiritual being' and higher scores in the area of 'Physical being'. Correlations examining possible relationships among Importance, Satisfaction and Opportunities found some statistically significant correlation coefficients between some aspects of the three main areas of individual QoL (Being, Belonging and Becoming) and the nine family domains. Most of these correlations regarded family 'Financial Well-Being', 'Family Relationships, 'Support from

  15. Measuring symptoms of post-traumatic stress disorder in people with intellectual disabilities: the development and psychometric properties of the Impact of Event Scale-Intellectual Disabilities (IES-IDs).

    Science.gov (United States)

    Hall, James C; Jobson, Laura; Langdon, Peter E

    2014-09-01

    The aims of the study were to (1) revise the Impact of Event Scale-Revised for use with people with intellectual disabilities (IDs), creating the Impact of Event Scale-Intellectual Disabilities (IES-IDs), (2) assess the reliability of the IES-IDs, and (3) compare the IES-IDs to an existing measure trauma-related symptomatology, namely the Lancaster and Northgate Trauma Scale (LANTS), along with measures of anxiety and depression. Forty adults with IDs who had experienced at least one traumatic event were recruited and completed the IES-IDs and the LANTS on two occasions, separated by 2 weeks. Participants also completed the Glasgow Depression Scale and the Glasgow Anxiety Scale, along with the Trauma Information Form which was used to collect information about trauma history. Fifteen per cent of the sample had encountered five or more traumatic events. The IES-IDs and the LANTS had good to excellent internal consistency and test-retest reliability. Both measures correlated with self-report measures of depression and anxiety, although the strength of this correlation was greater with the LANTS. There was a significant positive correlation between trauma frequency and the IES-IDs, while trauma frequency did not correlate with the LANTS. Both the IES-IDs and the LANTS appear to have good reliability. There is a lack of well-developed questionnaires that can be used to assess symptoms of post-traumatic stress disorder (PTSD) in people with intellectual disabilities. The Impact of Event Scale-Revised was augmented creating the Impact of Event Scale-Intellectual Disabilities (IES-IDs). The IES-IDs was shown to have good psychometric properties. The IES-IDs was compared to the Lancaster and Northgate Trauma Scale (LANTS), but the LANTS did not correlate with trauma frequency. However, this study had a small sample size, and a much larger study is needed to examine the factor structure of both the IES-IDs and the LANTS. Future studies should attempt to recruit people with

  16. A School-Based Intervention Associated with Improvements in Cardiometabolic Risk Profiles in Young People with Intellectual Disabilities

    Science.gov (United States)

    Wallén, Eva Flygare; Müllersdorf, Maria; Christensson, Kyllike; Marcus, Claude

    2013-01-01

    This study evaluates a multifactorial school-based intervention with the aim of decreasing cardiometabolic risk factors by means of a healthy lifestyle, primarily with daily physical activity and healthy food during school hours, at an upper secondary school for students with intellectual disabilities. The outcome is measured in terms of…

  17. Motor activation in people with profound intellectual and multiple disabilities: research in daily practice in residential facilities

    NARCIS (Netherlands)

    Bossink, Leontien; van der Putten, Annette; Vlaskamp, Carla

    2014-01-01

    Aim: The total study aims at generating knowledge about the best way to motor activate persons with profound intellectual and multiple disabilities (PIMD) in residential facilities. The purpose of the current poster presentation is to present the results of the first step executed in this project

  18. Effects of Video Feedback on Social Behaviour of Young People with Mild Intellectual Disability and Staff Responses.

    Science.gov (United States)

    Embregts, Petri J. C. M.

    2002-01-01

    A study evaluated effects of a multifaceted training procedure on the inappropriate and appropriate social behavior of five adolescents with mild intellectual disability and on staff responses. The training included video feedback and self-management procedures and staff training with video and graphic feedback. Results indicated increases in…

  19. The Relationship between the Recognition of Facial Expressions and Self-Reported Anger in People with Intellectual Disabilities

    Science.gov (United States)

    Woodcock, Kate A.; Rose, John

    2007-01-01

    Background: This study aims to examine the relationship between how individuals with intellectual disabilities report their own levels of anger, and the ability of those individuals to recognize emotions. It was hypothesized that increased expression of anger would be linked to lower ability to recognize facial emotional expressions and increased…

  20. Perspectives on quality of life of people with intellectual disabilities: the interpretation of discrepancies between clients and caregivers

    NARCIS (Netherlands)

    Janssen, C.G.C.; Schuengel, C.; Stolk, J.

    2005-01-01

    Large discrepancies have sometimes been found between the quality of life (QOL) experienced by clients with intellectual disabilities and their QOL as described by their caregivers. Olsen and Schober (Soc Indi Res 1993; 28: 173-193) may have provided a framework useful to conceptualize such

  1. The documentation of health problems in relation to prescribed medication in people with profound intellectual and multiple disabilities

    NARCIS (Netherlands)

    van der Heide, D. C.; van der Putten, A. A. J.; van den Berg, P. B.; Taxis, K.; Vlaskamp, C.

    Persons with profound intellectual and multiple disabilities (PIMD) suffer from a wide range of health problems and use a wide range of different drugs. This study investigated for frequently used medication whether there was a health problem documented in the medical notes for the drug prescribed.

  2. Assessing client-caregiver relationships and the applicability of the 'student-teacher relationship scale' for people with intellectual disabilities

    NARCIS (Netherlands)

    Roeden, J.M.; Maaskant, M.A.; Koomen, H.M.Y.; Candel, M.J.J.M.; Curfs, L.M.G.

    2012-01-01

    Improvements in client-caregiver relationships may lead to improvements in the quality of life of clients with intellectual disabilities (ID). For this reason, interventions aimed at influencing these relationships are important. To gain insight into the nature and intention of these relationships

  3. Emerging Trends in the Use of Drugs to Manage the Challenging Behaviour of People with Intellectual Disability

    Science.gov (United States)

    McGillivray, Jane A.; McCabe, Marita P.

    2006-01-01

    Background: Concerns about the pharmacological management of the behaviour of individuals with intellectual disability have resulted in the development of legislative and procedural controls. Method: This Australian study provided a comparison of 873 reported cases where drugs were administered to manage behaviour in March 2000, with 762 cases…

  4. Health Gain through Screening--Coronary Heart Disease and Stroke: Developing Primary Health Care Services for People with Intellectual Disability.

    Science.gov (United States)

    Wells, M. B.; Turner, S.; Martin, D. M.; Roy, A.

    1997-01-01

    A study of 120 British adults with intellectual disability found they had higher risk factors of developing coronary heart disease and stroke than the general population. There was a greater incidence of obesity and considerably lower physical activity levels than the general population. Several also had abnormal cholesterol readings. (CR)

  5. Qualitative Evaluation of a Physical Activity Health Promotion Programme for People with Intellectual Disabilities in a Group Home Setting

    Science.gov (United States)

    Dixon-Ibarra, A.; Driver, S.; Nery-Hurwit, M.; VanVolkenburg, H.

    2018-01-01

    Background: There is a lack of health promotion programming designed to change the physical activity environment of the group home setting. The Menu-Choice programme assists staff in creating physical activity goals alongside residents with intellectual disabilities and provides strategies to incorporate activity into the group home schedule. The…

  6. Evaluation of Cognitively Accessible Software to Increase Independent Access to Cellphone Technology for People with Intellectual Disability

    Science.gov (United States)

    Stock, S. E.; Davies, D. K.; Wehmeyer, M. L.; Palmer, S. B.

    2008-01-01

    Background: There are over two billion telephones in use worldwide. Yet, for millions of Americans with intellectual disabilities (ID), access to the benefits of cellphone technology is limited because of deficits in literacy, numerical comprehension, the proliferation of features and shrinking size of cellphone hardware and user interfaces.…

  7. The Role of Training in Improving Community Care Staff Awareness of Mental Health Problems in People with Intellectual Disabilities

    Science.gov (United States)

    Costello, Helen; Bouras, Nick; Davis, Hilton

    2007-01-01

    Background: Care staff play a key role in identifying individuals with intellectual disabilities and additional mental health problems. Yet, few receive training in mental health, and evidence about the effectiveness of training is scant. Materials and Methods: A pre-post study is reported, using a mental health screen and a self-report…

  8. Supporting People with an Intellectual Disability and Mental Health Problems: A Scoping Review of What They Say about Service Provision

    Science.gov (United States)

    Venville, Annie; Sawyer, Anne-Maree; Long, Maureen; Edwards, Niki; Hair, Sara

    2015-01-01

    This article reports on the findings of a scoping review of peer-reviewed research that investigates the formal support experiences of adults with an intellectual disability and mental health problems. Seven databases and 21 sources of grey literature were searched and 17 articles were retained for review, demonstrating the dearth of literature in…

  9. Legal Rights & Intellectual Disability: A Short Guide.

    Science.gov (United States)

    Hall, Julia, Ed.; And Others

    The book examines actions that may be taken to redress wrongs illegally perpetrated against people with intellectual disabilities in New South Wales, Australia. Ten topic areas are addressed (sample subtopics in parentheses): protecting rights (complaints to government departments, use of the ombudsman); discrimination (legal aid); personal…

  10. A Q-methodology study among caregivers of people with moderate intellectual disabilities on their clients' health care: An example in oral health.

    Science.gov (United States)

    Eijsink, A M; Schipper, G; Vermaire, J H

    2018-04-10

    People with intellectual disabilities have less favourable outcomes in-among others-oral health variables, compared to their peers without intellectual disabilities. Before being able to develop target interventions for caregivers, all their prevailing viewpoints regarding oral hygiene need to be identified. This Q-methodology study-conducted among 40 caregivers of care-dependent Institutionalized living persons with moderate intellectual disability-used by-person factor analysis to reveal clusters of caregivers based on the way their statements were sorted. A 4-factor solution was chosen based on both the Q-sorting and the interviews. The four factors identified were responsible and perseverant, motivated but aware of obstacles, social minded and knowledgeable and concerned and insecure. Q-methodology can be used to determine the different attitudes that caregivers have regarding oral health care. Developing a tool to determine into which factor caregivers should be categorized may be the next step in tailoring oral health instruction. © 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.

  11. Being a valuable contributor on the frontline: The self-perception of staff in group homes for people with intellectual disability.

    Science.gov (United States)

    Quilliam, Claire; Bigby, Christine; Douglas, Jacinta

    2018-05-01

    Group home frontline staff have a critical role in implementing service policies, yet research typically examines implementation issues from an organisational perspective. The aim of this study was to explore the self-perception of frontline staff about their role in group homes for people with intellectual disability. Constructivist grounded theory methodology guided the study. Data were collected with frontline staff through semistructured interviews and participant observations. Coding and sorting methods were used to analyse participants' self-perception. Frontline staff felt they were valuable contributors who knew the service setting and residents well. Despite this staff felt powerless in their roles, excluded from organisational dialogue, stressed and exhausted. Frontline staff have critical insight into service implementation although disability service organisations may limit their capacity to contribute to this. Further action could explore new ways to better nurture frontline staff engagement in organisational dialogue. © 2017 The Authors Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.

  12. What Effect Does Transition Have on Health and Well-Being in Young People with Intellectual Disabilities? A Systematic Review.

    Science.gov (United States)

    Young-Southward, Genevieve; Philo, Christopher; Cooper, Sally-Ann

    2017-09-01

    Transition to adulthood might be a risk period for poor health in people with intellectual disabilities. However, the present authors could find no synthesis of evidence on health and well-being outcomes during transition in this population. This review aimed to answer this question. PRISMA/MOOSE guidelines were followed. Search terms were defined, electronic searches of six databases were conducted, reference lists and key journals were reviewed, and grey literature was searched. Papers were selected based on clear inclusion criteria. Data were extracted from the selected papers, and their quality was systematically reviewed. The review was prospectively registered on PROSPERO: CRD42015016905. A total of 15 985 articles were extracted; of these, 17 met the inclusion criteria. The results of these articles were mixed but suggested the presence of some health and well-being issues in this population during transition to adulthood, including obesity and sexual health issues. This review reveals a gap in the literature on transition and health and points to the need for future work in this area. © 2016 John Wiley & Sons Ltd.

  13. Self-Reporting Tool On Pain in People with Intellectual Disabilities (STOP-ID!): a Usability Study.

    Science.gov (United States)

    de Knegt, Nanda C; Lobbezoo, Frank; Schuengel, Carlo; Evenhuis, Heleen M; Scherder, Erik J A

    2016-01-01

    The use of the Self-reporting Tool On Pain in people with Intellectual Disabilities (STOP-ID!), an online application developed by the authors to aid in the self-reporting of pain, was evaluated in 40 adults with Down syndrome. Comprehension of the use of the tool (the ability to recognize representations for vocabulary and pain, and to navigate the tool interface), and the use of the tool to self-report pain experience, were investigated. The use of the online tool was investigated with both a laptop and a tablet computer in a crossover design. The results provide evidence that more participants recognized representations of pain location and pain affect than representations of pain intensity and pain quality. A small percentage of participants demonstrated the ability to recognize all of the representations of vocabulary items and to navigate the tool without assistance (18% laptop, 18% tablet). Half of the participants were able to report at least one pain component of a current or remembered pain experience without assistance (50% laptop, 53% tablet). Ways to improve the design of tools for reporting pain and to improve performance are suggested.

  14. Life satisfaction of people with intellectual disability living in community residences: perceptions of the residents, their parents and staff members.

    Science.gov (United States)

    Schwartz, C; Rabinovitz, S

    2003-02-01

    Within the literature on quality of life (QoL), life satisfaction (LS) has emerged as a key variable by which to measure perceived well-being, which is referred to as subjective QoL. The LS self-reports of 93 residents with intellectual disability (ID) living in community-based residences were compared with reports about their LS completed by their staff and parents. The residents were interviewed on their LS by social workers who did not belong to the staff of the interviewee's residence. The instrument used was the Life Satisfaction Scale (LSS). Staff and parents completed the short version of the LSS. Residents and staff's LS reports were positively correlated. However, significant differences were found between these two groups of informants when the residents were characterized as high functioning, had a low score in challenging behaviour, worked in an integrative employment setting and lived in an apartment. As opposed to staff/resident discrepancies, no differences were found between parents' and residents' LS reports. If residents cannot to be interviewed about their LS, then the parent is the preferred person to respond on behalf of the resident. The current study highlights the importance of including both objective measures (e.g. functional assessment characteristics) and subjective measures (e.g. LS) in order to get a better understanding of the QoL of people with ID.

  15. "With a Touch of a Button": Staff perceptions on integrating technology in an Irish service provider for people with intellectual disabilities.

    Science.gov (United States)

    Clifford Simplican, Stacy; Shivers, Carolyn; Chen, June; Leader, Geraldine

    2018-01-01

    People with intellectual disabilities continue to underutilize technology, in part due to insufficient training. Because support staff professionals provide instructional support, how they perceive integrating new technologies is important for people with intellectual disabilities. The authors conducted a sequential mixed-methods exploratory study (quan→QUAL) including quantitative data from online surveys completed by 46 staff members and qualitative data from five focus groups attended by 39 staff members. Quantitative results show strong support for diverse technologies. In contrast, qualitative results suggest that staff members' support of technology decreases when they perceive that technology may jeopardize service users' safety or independence. Although staff members identified increasing independence as the main reason to use new technologies with service users, they also worried that technologies used to increase the social inclusion of service users may pose undue risk and thus may limit their embrace of technology. © 2017 John Wiley & Sons Ltd.

  16. Quality of Diagnosis and Treatment Plans After Using the 'Diagnostic Guideline for Anxiety and Challenging Behaviours' in People with Intellectual Disabilities: A Comparative Multiple Case Study Design.

    Science.gov (United States)

    Pruijssers, Addy; van Meijel, Berno; Maaskant, Marian; Keeman, Noortje; van Achterberg, Theo

    2016-07-01

    People with intellectual disabilities often have a multitude of concurrent problems due to the combination of cognitive impairments, psychiatric disorders (particularly anxiety) and related challenging behaviours. Diagnoses in people with intellectual disabilities are complicated. This study evaluates the quality of the diagnoses and treatment plans after using a guideline that was developed to support professionals in their diagnostic tasks. A comparative multiple case study with an experimental and control condition, applying deductive analyses of diagnoses and treatment plans. The analyses revealed that the number of diagnostic statements and planned treatment actions in the experimental group was significantly larger and more differentiated than in the control condition. In the control group, consequential harm and protective factors were hardly mentioned in diagnoses and treatment plans. Working with the 'Diagnostic Guideline for Anxiety and CB' leads to improved diagnoses and treatment plans compared with care as usual. © 2015 John Wiley & Sons Ltd.

  17. Evaluating Youtube Platform Usability by People with Intellectual Disabilities (A User Experience Case Study Performed in a Six-Month Period)

    OpenAIRE

    Tânia Rocha; José Martins; Frederico Branco; Ramiro Gonçalves

    2017-01-01

    A comparison study of the Web interaction evolution of a group of people with intellectual disabilities, when performing search tasks using the YouTube platform, is presented. For the effect, we compare results in two assessment moments (the second assessment moment was performed, within the 6 months after the first one). We aimed at evaluating the evolution of their digital skills by comparing two assessment moments through the following usability variables: effectiveness, we register the...

  18. Police Contact with People with an Intellectual Disability: The Independent Third Person Perspective

    Science.gov (United States)

    Spivak, B. L.; Thomas, S. D. M.

    2013-01-01

    Background: A number of jurisdictions have instituted legislation requiring an independent person to be present during police interviews with vulnerable people. In Victoria, Australia, a group of volunteers known as Independent Third Persons help to fulfil this role with people who present with cognitive impairment arising from their mental…

  19. Identifying the key concerns of Irish persons with intellectual disability.

    Science.gov (United States)

    García Iriarte, Edurne; O'Brien, Patricia; McConkey, Roy; Wolfe, Marie; O'Doherty, Siobhain

    2014-11-01

    Internationally, people with intellectual disability are socially marginalized, and their rights under the United Nations Convention for the Rights of Persons with Disabilities (CRPD) are often ignored. This paper aims to define the key concerns of adults with an intellectual disability in relation to their participation in society using an inclusive research strategy for both data gathering and data analysis. A national study involving 23 focus groups and 168 persons was conducted on the island of Ireland with people with intellectual disability as co-facilitators. A thematic content analysis was undertaken of the verbatim transcripts initially by university co-researchers, and 19 themes were identified. Co-researchers with intellectual disability joined in identifying the eight core themes. These were as follows: living options, employment, relationships, citizenship, leisure time, money management, self-advocacy, and communication. The concerns are discussed within the framework of the CRPD, and implications for transforming service policy are drawn. Why we did the research In many countries, people with intellectual disability have difficulties doing things other people without disabilities do, for example to study, to get a job or to live independently. They also find that their rights are not respected under the Convention on the Rights of Persons with Disabilities (the Convention). We did this study to Learn what are the main issues for adults with intellectual disability in Ireland. Do research with people with intellectual disability. How we did the research People with intellectual disability and their supporters worked with university researchers to plan and do the research. We met with people in groups and 168 people told us about things important to them. What we found out We found that there were very important things that people talked about in the groups. We chose the most important: living options, employment, relationships, rights, leisure, money

  20. Decision making about medical interventions in the end-of-life care of people with intellectual disabilities: a national survey of the considerations and beliefs of GPs, ID physicians and care staff.

    NARCIS (Netherlands)

    Bekkema, N.; Veer, A.J.E. de; Wagemans, A.M.A.; Hertogh, C.M.P.M.; Francke, A.L.

    2014-01-01

    Objective: This paper explores the personal beliefs and specific considerations of professionals regarding decisions about potentially burdensome medical interventions in the end-of-life care for people with intellectual disabilities (ID). Methods: A survey questionnaire covering decision making

  1. Decision making about medical interventions in the end-of-life care of people with intellectual disabilities: A national survey of the considerations and beliefs of GPs, ID physicians and care staff

    NARCIS (Netherlands)

    Bekkema, N.; de Veer, A.J.E.; Wagemans, A.M.A.; Hertogh, C.M.P.M.; Francke, A.L.

    2014-01-01

    Objective: This paper explores the personal beliefs and specific considerations of professionals regarding decisions about potentially burdensome medical interventions in the end-of-life care for people with intellectual disabilities (ID). Methods: A survey questionnaire covering decision making

  2. 76 FR 76738 - President's Committee for People With Intellectual Disabilities Notice of Committee Meeting via...

    Science.gov (United States)

    2011-12-08

    ... format such as large print or Braille) should notify Genevieve Swift, PCPID Executive Administrative Assistant, at Edith.Swift@acf.hhs.gov , or by telephone at (202) 619-0634, no later than Wednesday, January... information, please contact Laverdia Taylor Roach, Senior Advisor, President's Committee for People with...

  3. The Recognition of Web Pages' Hyperlinks by People with Intellectual Disabilities: An Evaluation Study

    Science.gov (United States)

    Rocha, Tania; Bessa, Maximino; Goncalves, Martinho; Cabral, Luciana; Godinho, Francisco; Peres, Emanuel; Reis, Manuel C.; Magalhaes, Luis; Chalmers, Alan

    2012-01-01

    Background: One of the most mentioned problems of web accessibility, as recognized in several different studies, is related to the difficulty regarding the perception of what is or is not clickable in a web page. In particular, a key problem is the recognition of hyperlinks by a specific group of people, namely those with intellectual…

  4. The Assessment of Executive Functioning in People with Intellectual Disabilities: An Exploratory Analysis

    Science.gov (United States)

    Bevins, Shelley; Hurse, Emily

    2016-01-01

    The following article details a piece of service development work undertaken as part of the Plymouth Down Syndrome Screening Programme. The work aimed to review the use of three measures assessing executive functioning skills used within the Programme as well as with people without Down syndrome. Three tasks assessing executive functioning (the…

  5. Fruit flies and intellectual disability

    OpenAIRE

    Bolduc, François V.; Tully, Tim

    2009-01-01

    Mental retardation—known more commonly nowadays as intellectual disability—is a severe neurological condition affecting up to 3% of the general population. As a result of the analysis of familial cases and recent advances in clinical genetic testing, great strides have been made in our understanding of the genetic etiologies of mental retardation. Nonetheless, no treatment is currently clinically available to patients suffering from intellectual disability. Several animal models have been use...

  6. The State of the Science of Employment and Economic Self-Sufficiency for People with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Nord, Derek; Luecking, Richard; Mank, David; Kiernan, William; Wray, Christina

    2013-01-01

    Employment, career advancement, and financial independence are highly valued in the United States. As expectations, they are often instilled at a young age and incentivized throughout adulthood. Despite their importance, employment and economic sufficiency continue to be out of reach for most people with intellectual and developmental disabilities…

  7. Exploring the Literature on Music Participation and Social Connectedness for Young People with Intellectual Disability: A Critical Interpretive Synthesis

    Science.gov (United States)

    Murphy, Melissa A. I.; McFerran, Katrina

    2017-01-01

    Background: This article explores the literature on social connectedness and music for young people with disability. It then critically examines the level of congruence between the reported literature to date and current rights-based disability studies discourse. Method: A critical interpretive synthesis was used to examine 27 articles referencing…

  8. Business Modelling for ICT based services targeted to Intellectually Disabled People

    OpenAIRE

    Peethambaran, Anoja

    2011-01-01

    Services are becoming a key focus in the current era. Organizations globally are facing rapid changes in providing services. Despite this alarming growth, the advancement in Information and Communications Technology (ICT) has created so many opportunities but considerable challenges for the service industry. Information and Communication Technologies (ICT) have become part of everyday life in recent years. ICT can provide dignity and well-being to people through self-facilitation. ICT lik...

  9. Eye movement desensitization and reprocessing in an adolescent with epilepsy and mild intellectual disability

    NARCIS (Netherlands)

    Rodenburg, R.; Benjamin, A.; Meijer, A.M.; Jongeneel, R.

    2009-01-01

    Intellectual disability is a comorbid condition in epilepsy. People with epilepsy and intellectual disability are at high risk of developing behavioral problems. Among the many contributors to behavioral problems in people with epilepsy and intellectual disability are those of traumatic experiences.

  10. An Initial Evaluation of the Comprehensive Quality of Life Scale--Intellectual Disability.

    Science.gov (United States)

    Cummins, Robert A.; And Others

    1997-01-01

    A study of 59 Australian people with an intellectual disability and 69 university students evaluated a new scale to measure the life quality of people with an intellectual disability. The Comprehensive Quality of Life Scale--Intellectual Disability was found to be a useful instrument to measure comparative life quality. (Author/CR)

  11. "You Have to Care." Perceptions of Promoting Autonomy in Support Settings for Adults with Intellectual Disability

    Science.gov (United States)

    Petner-Arrey, Jami; Copeland, Susan R.

    2015-01-01

    This study from the south-western United States investigated the perceptions of persons with intellectual disability receiving support and of persons providing support regarding the autonomy of people with intellectual disability. The participants included 10 people with intellectual disability and 10 support workers. Through interviews, this…

  12. The tell-tale: what do heart rate; skin temperature and skin conductance reveal about emotions of people with severe and profound intellectual disabilities?

    Science.gov (United States)

    Vos, Pieter; De Cock, Paul; Munde, Vera; Petry, Katja; Van Den Noortgate, Wim; Maes, Bea

    2012-01-01

    Identifying emotions in people with severe and profound intellectual disabilities is a difficult challenge. Since self-reports are not available, behaviour is the most used source of information. Given the limitations and caveats associated with using behaviour as the sole source of information about their emotions, it is important to supplement behavioural information with information from another source. As it is accepted that emotions consist of language, behaviour and physiology, in this article we investigated if physiology could give information about the emotions of people with severe and profound intellectual disabilities. To this aim we tested hypotheses derived from the motivational model of Bradley, Codispoti, Cuthbert, and Lang (2001) about the relation between heart rate and the valence of emotions and between heart rate, skin conductance and skin temperature and behavioural expressions of emotions of people with severe and profound intellectual disability. We presented 27 participants with 4 staff-selected negative and 4 staff-selected positive stimuli. The situations were videotaped and their heart rate, skin conductance and skin temperature was measured. Each behaviour of the participant was coded using the observational method developed by Petry and Maes (2006). As hypothesized, we found a lower heart rate when participants were presented with negative stimuli than when they were presented with positive stimuli in the first 6s of stimuli presentation. Their skin temperature was higher for the expression of low intensity negative emotions compared to the expression of low intensity positive emotions. The results suggest that, as with people without disability, heart rate and skin temperature can give information about the emotions of persons with severe and profound ID. Copyright © 2012 Elsevier Ltd. All rights reserved.

  13. Suicide behavior in persons with intellectual disability.

    Science.gov (United States)

    Merrick, Joav; Merrick, Efrat; Lunsky, Yona; Kandel, Isack

    2005-09-08

    Suicide is today in the Western world one of the leading causes of death and most people have had suicidal ideation at some time during their life. In the population of persons with intellectual disability some researchers have thought that impaired intellectual capacity could act as a buffer to suicidal behavior, but the fact is that the few studies conducted in that population contest this assumption and showed that the characteristics of suicidality in this population are very similar to persons without intellectual disability. This paper reviews the studies conducted and describe the symptomatology in this population. Professionals working with this population should therefore be aware of and assess for this behavior. Sadness or depression are symptoms that could indicate later suicidal behavior.

  14. Suicide Behavior in Persons with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Joav Merrick

    2005-01-01

    Full Text Available Suicide is today in the Western world one of the leading causes of death and most people have had suicidal ideation at some time during their life. In the population of persons with intellectual disability some researchers have thought that impaired intellectual capacity could act as a buffer to suicidal behavior, but the fact is that the few studies conducted in that population contest this assumption and showed that the characteristics of suicidality in this population are very similar to persons without intellectual disability. This paper reviews the studies conducted and describe the symptomatology in this population. Professionals working with this population should therefore be aware of and assess for this behavior. Sadness or depression are symptoms that could indicate later suicidal behavior.

  15. Investigating the factors that affect the communication of death-related bad news to people with intellectual disabilities by staff in residential and supported living services: An interview study.

    Science.gov (United States)

    Tuffrey-Wijne, I; Rose, T

    2017-08-01

    Most staff working in intellectual disability services will be confronted with people with intellectual disabilities who need support around death, dying and bereavement. Previous studies suggest that intellectual disability staff tend to protect clients from knowing about death and avoid communication about death. The aims of this study were to gain further insight into the individual, organisational and contextual factors that affect the communication of death-related bad news to people with intellectual disabilities by intellectual disability staff and to develop guidelines for services to enable appropriate communication with clients about death and dying. Semi-structured interviews were held with 20 social care staff working in intellectual disability residential or supported living services in London, who had supported a client affected by death-related bad news in the past 6 months. Staff found supporting people with intellectual disabilities around death and dying extremely difficult and tended to avoid communication about death. The following factors had a particularly strong influence on staff practice around communicating death-related bad news: fear and distress around death; life and work experience; and organisational culture. Staff attitudes to death communication had a stronger influence than their client's level of cognitive or communicative abilities. Managers were important role models. Service managers should ensure not only that all their staff receive training in death, loss and communication but also that staff are enabled to reflect on their practice, through emotional support, supervision and team discussions. Future work should focus on the development and testing of strategies to enable intellectual disability staff to support their clients in the areas of dying, death and bereavement. © 2017 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  16. Composición y equilibrio corporal de personas con discapacidad intelectual: estudio descriptivo. [Body composition and body balance in people with intellectual disabilities: a descriptive study].

    Directory of Open Access Journals (Sweden)

    Ruth Cabeza-Ruiz

    2016-10-01

    Full Text Available Objetivo: Evaluar la composición corporal y el equilibrio corporal de adultos con discapacidad intelectual. Métodos: Estudio transversal descriptivo y comparación de resultados con valores de referencia presentados en población sin discapacidad. La muestra estuvo compuesta por 86 hombres y 36 mujeres con discapacidad intelectual con edades comprendidas entre los 21 y los 60 años. Se evaluaron el equilibrio estático, dinámico y la composición corporal mediante las pruebas del Alpha-Fit Test Battery for Adults. Resultados: Los resultados obtenidos por los participantes fueron comparados con valores de referencia de personas sin discapacidad y se muestran como media y desviación típica para diferentes grupos de edad. Los análisis descriptivos mostraron que las personas con discapacidad obtuvieron resultados relacionados con un alto riesgo de enfermedad cardiovascular en relación a la composición corporal, presentando la mayoría de ellos sobrepeso y valores elevados de circunferencia de cintura. En relación al equilibrio, tanto en posiciones estáticas como dinámicas, los participantes presentaron resultados vinculados a una baja condición física. Conclusiones: La composición corporal y la capacidad de equilibrio de las personas con discapacidad intelectual evaluadas en el presente estudio son comparables a la de adultos mayores sin discapacidad de referencia. Abstract Purpose: To assess body composition and body balance, both static and dynamic, of adults with intellectual disabilities. Methods: A cross sectional descriptive study was used. 86 men and 36 women with intellectual disabilities participated in the study (21-60 years old. The Alpha-Fit Test Battery for Adults was used to evaluate dynamic and static balance and body composition. Results: Results were compared to published reference values from people without disabilities. Results are showed as mean and standard deviation for each age group. Body composition variables

  17. Intellectual disability and the prison setting

    Directory of Open Access Journals (Sweden)

    V. Tort

    2016-06-01

    Full Text Available Introduction: The prevalence of intellectual disability (ID in the prison setting has scarcely been studied. Although some approximations or estimates regarding people with intellectual disabilities have been performed in Spain, there is little in the way of reliable data. Objectives: 1 To determine the prevalence of ID in a sample population in the residential modules of a Spanish prison, 2 Obtain data on the prevalence of ID in prison psychiatric units and hospitals. Methods: 1 A TONI II test was performed on a sub-sample (n = 398 of a prevalence study in Spanish prisons33 to identify inmates with intellectual disabilities. 2 We reviewed the reports of the psychiatric department of Parc Sanitari Sant Joan de Deu to establish the diagnosis at discharge of patients with a primary diagnosis of intellectual disability 3 Data from the Directorate General of Prisons on the prevalence of ID in Prison Psychiatric Hospitals was reviewed. Results: The data obtained from the TONI II test found 3.77% of the study population has an IQ below 70, and 7.54 % has a borderline IQ rate. Assessment of penitentiary psychiatric hospitalization data showed these figures to be higher. Conclusions: The data from a Spanish prison population showed that ID levels were higher than those in the community, especially amongst prisoners requiring specialized psychiatric care. What is also evident is that adequate resources are required in prisons and in the community to provide better care for people with intellectual disabilities who are in the pathway of the criminal justice system.

  18. STRUCTURE AND VALIDATION OF A CONTEXTUAL QUALITY OF LIFE SCALE FOR PEOPLE WITH INTELLECTUAL DISABILITIES IN SOCIAL SERVICES: AN ORGANIZATION-ORIENTED MEASURE FROM AN EXTERNAL PERSPECTIVE

    Directory of Open Access Journals (Sweden)

    Carolina Moliner

    2013-09-01

    Full Text Available The aim of this study is to develop and validate a scale on the Quality of Life (QoL of people with intellectual disabilities as assessed by family members (external perspective. The instrument measures improvement in QoL due to actions by organizations delivering services to individuals with intellectual disabilities (organization-oriented measure. In order to design the items for the scale, focus groups were set up with professionals dedicated to attending to individuals with intellectual disabilities. An initial scale of 20 items was constructed by consensus. A total of 1195 family members answered the questionnaire. In order to assess the structure of the scale, EFA recommended deleting 3 overlapping items. The final scale consisted of 17 items (α=95 and was composed of four main dimensions: self-determination (SD, social inclusion (SI, rights (RI and overall improvement (OI, which explained 74.83% of the variance. Finally, the consistency and validity were assessed. Convergent validity and discriminant validity were satisfactory. Moreover, CFA confirmed the structure of the scale. Main conclusions, limitations and practical implications are discussed.

  19. Therapy of depression in persons with intellectual disability

    OpenAIRE

    Tomić, Katarina; Mihajlović, Goran

    2012-01-01

    Considering the high frequency of depression among people with intellectual disability, the question of an appropriate therapeutic approach seems to be very important. The propper choice of therapy depends of the right diagnosis, which could present a problem, because of the atipical presentation of simptoms. Still, the efforts made to overcome onesidedness in treating depression among people with intellectual disability, which was seen mostly through insisting on psychopharmacotherapy, have ...

  20. Adolescents with intellectual disability and suicidal behavior.

    Science.gov (United States)

    Merrick, Joav; Merrick, Efrat; Morad, Mohammed; Kandel, Isack

    2005-09-08

    It has been assumed that impaired intellectual capacity could act as a buffer to suicidality in the population of children and adolescents with intellectual disability. The few studies that have been conducted contest this assumption and in fact the findings showed that the characteristics of suicidality in the population of children and adolescents with intellectual disability are very similar to other adolescents without intellectual disability. This paper reviews the few studies conducted and describe the symptomatology in this population.

  1. Adolescents with Intellectual Disability and Suicidal Behavior

    Directory of Open Access Journals (Sweden)

    Joav Merrick

    2005-01-01

    Full Text Available It has been assumed that impaired intellectual capacity could act as a buffer to suicidality in the population of children and adolescents with intellectual disability. The few studies that have been conducted contest this assumption, and in fact, the findings showed that the characteristics of suicidality in the population of children and adolescents with intellectual disability are very similar to other adolescents without intellectual disability. This paper reviews the few studies conducted and describe the symptomatology in this population.

  2. Challenges for independent living of people with intellectual disabilities. A study based on their opinions, opinions of their families and professionals

    Directory of Open Access Journals (Sweden)

    Maria Pallisera Díaz

    2018-06-01

    Full Text Available Despite Spain's ratification of the Convention on the Rights of Persons with Disabilities in 2007, there are few studies on the situation of people with intellectual disabilities (ID regarding their right to independent living (art. 19. In order to analyse the barriers, supports and challenges that affect the exercise of this right, a qualitative study was developed through 10 focus groups and 22 individual interviews with people with ID, 5 focus groups with families, and 33 individual interviews with professionals. The research results show the need to guarantee the universality of the right to independent living, offering quality personalized supports and developing training and awareness actions in the area of rights with the different actors involved.

  3. Parent training support for intellectually disabled parents.

    Science.gov (United States)

    Coren, Esther; Hutchfield, Jemeela; Thomae, Manuela; Gustafsson, Carina

    2010-06-16

    Intellectual disability may impact on an individual's capacity to parent a child effectively. Research suggests that the number of intellectually disabled people with children is increasing. Children of parents with intellectual disabilities may be at increased risk of neglectful care which could lead to health, developmental and behavioural problems, or increased risk of intellectual disability.However, there is some indication that some parents with intellectual disabilities are able to provide adequate child care if they are given appropriate training and support to do so. To assess the effectiveness of parent training interventions to support the parenting of parents with intellectual disabilities We searched the following databases: Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library), MEDLINE, EMBASE, CINAHL, PsycINFO, ASSIA, Sociological Abstracts, Dissertation Abstracts International, MetaRegister of Controlled Trials, and ZETOC. Randomised controlled trials comparing parent training interventions for parents with intellectual disabilities with usual care or with a control group. Outcomes of interest were: the attainment of parenting skills specific to the intervention, safe home practices and the understanding of child health. Two review authors independently assessed risk of bias and undertook data extraction. Three trials met the inclusion criteria for this review but no meta-analysis was possible. One study reported improved maternal-child interaction following group parent training compared with the control group. The second study reported some improvements in parents knowledge of life threatening emergencies, ability to recognise dangers and identify precautions and smaller improvements in their ability to implement precautions, use medicines safely and recognise child illness and symptoms. The third study reported improvement in child care and safety skills following the intervention. There is some risk of bias in the

  4. Asthma in intellectual disability: are we managing our patients appropriately?

    Science.gov (United States)

    2016-01-01

    People with intellectual disability are a vulnerable group of people with asthma that has, to date, largely been ignored in the medical literature. Although guidelines for medication management for people with intellectual disability suggest asthma is treated as for other populations, there are special considerations that should be taken into account when managing asthma in this group. Due to their cognitive impairment as well as comorbidities, they are likely to require support with asthma self-management, including inhaler use. Their varying degrees of autonomy mean that there is often a need to provide education and information to both the person and their caregivers. Educational aims To understand general principles of health of people with intellectual disability and how this affects the healthcare professional’s approach to asthma management. To understand how intellectual disability affects cognition, autonomy and communication, and therefore the ability of a person to self-manage asthma. To recognise ways of mitigating respiratory disease risk in people with intellectual disability. To describe ways for healthcare professionals to support people with intellectual disability and their caregivers in asthma management. PMID:28210318

  5. Relation between Working Memory and Self-Regulation Capacities and the Level of Social Skills Acquisition in People with Moderate Intellectual Disability

    Science.gov (United States)

    Ducic, Bojan; Gligorovic, Milica; Kaljaca, Svetlana

    2018-01-01

    Background: Social competence deficit is one of the main characteristics of intellectual disability. The aim of this paper is to determine the influence of working memory (WM) and self-regulation (SR) on social skills in persons with moderate intellectual disability (MID). Method: The sample included 41 participants with MID, aged 14-21.…

  6. Moving towards Midlife Care as Negotiated Family Business: Accounts of People with Intellectual Disabilities and Their Families "Just Getting along with Their Lives Together"

    Science.gov (United States)

    Knox, Marie; Bigby, Christine

    2007-01-01

    This study explores meanings of family care held by seven families that include a middle-aged adult with intellectually disability. In-depth interviews were conducted with members of each family--the person with intellectual disability, parents, siblings, and sibling spouses. Participants described care as simply getting on with their lives, as…

  7. Therapeutic interventions in the Netherlands and Belgium in support of people with profound intellectual and multiple disabilities

    NARCIS (Netherlands)

    Vlaskamp, Carla; Nakken, Han

    For several reasons, people with profound and multiple disabilities may be offered a variety of therapeutic interventions. Thus far, researchers have shown a limited interest in providing an empirical base for these interventions. Research is needed on the theoretical rationale (if any), the

  8. Behaviour Problems in Children with Intellectual Disabilities in a Resource-Poor Setting in India--Part 1: Association with Age, Sex, Severity of Intellectual Disabilities and IQ

    Science.gov (United States)

    Lakhan, Ram; Kishore, M. Thomas

    2018-01-01

    Background: Behaviour problems are most common in people with intellectual disabilities. Nature of behaviour problems can vary depending upon the age, sex and intellectual level (IQ). Objectives: This study examined the distribution of behaviour problems across intellectual disability categories and their association with IQ age and sex in…

  9. Fruit flies and intellectual disability.

    Science.gov (United States)

    Bolduc, François V; Tully, Tim

    2009-01-01

    Mental retardation--known more commonly nowadays as intellectual disability--is a severe neurological condition affecting up to 3% of the general population. As a result of the analysis of familial cases and recent advances in clinical genetic testing, great strides have been made in our understanding of the genetic etiologies of mental retardation. Nonetheless, no treatment is currently clinically available to patients suffering from intellectual disability. Several animal models have been used in the study of memory and cognition. Established paradigms in Drosophila have recently captured cognitive defects in fly mutants for orthologs of genes involved in human intellectual disability. We review here three protocols designed to understand the molecular genetic basis of learning and memory in Drosophila and the genes identified so far with relation to mental retardation. In addition, we explore the mental retardation genes for which evidence of neuronal dysfunction other than memory has been established in Drosophila. Finally, we summarize the findings in Drosophila for mental retardation genes for which no neuronal information is yet available. All in all, this review illustrates the impressive overlap between genes identified in human mental retardation and genes involved in physiological learning and memory.

  10. Self-compassion and psychological distress in parents of young people and adults with intellectual and developmental disabilities.

    Science.gov (United States)

    Robinson, Suzanne; Hastings, Richard P; Weiss, Jonathan A; Pagavathsing, Jaffni; Lunsky, Yona

    2018-05-01

    Parenting an individual with intellectual and developmental disabilities (IDD) can be challenging, particularly during adulthood. It is important to better understand ways of supporting families as individuals with IDD age. Self-compassion is a potential internal coping resource for parents, and is strongly linked to positive mental health outcomes, though research has yet to examine it in parents of adults with IDD. The current study examines the association between self-compassion and measures of well-being for 56 parents of adults with IDD. Greater self-compassion was related to lower levels of stress and depression, even after accounting for other known stressors, such as economic disadvantage, having a child with an Autism Spectrum Disorder diagnosis, and high parent burden. Self-compassion may offer resiliency against these parenting challenges. © 2017 John Wiley & Sons Ltd.

  11. Personalization, self-advocacy and inclusion: An evaluation of parent-initiated supported living schemes for people with intellectual and developmental disabilities in the Netherlands.

    Science.gov (United States)

    Reindl, Marie-Sol; Waltz, Mitzi; Schippers, Alice

    2016-06-01

    This study focused on parent-initiated supported living schemes in the South of the Netherlands and the ability of these living schemes to enhance participation, choice, autonomy and self-advocacy for people with intellectual or developmental disabilities through personalized planning, support and care. Based on in-depth interviews with tenants, parents and caregivers, findings included that parent-initiated supported housing schemes made steps towards stimulating self-advocacy and autonomy for tenants. However, overprotective and paternalistic attitudes expressed by a significant number of parents, as well as structural constraints affecting the living schemes, created obstacles to tenants' personal development. The study calls for consideration of interdependence as a model for the relationship of parents and adult offspring with disabilities. The benefits and tensions inherent within this relationship must be taken into consideration during inclusive community building. © The Author(s) 2016.

  12. 'From activating towards caring': shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians.

    NARCIS (Netherlands)

    Bekkema, N.; Veer, A.J.E. de; Hertogh, C.M.P.M.; Francke, A.L.

    2015-01-01

    Background: Professionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people

  13. 'From activating towards caring': shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians

    NARCIS (Netherlands)

    Bekkema, N.; de Veer, A.J.E.; Hertogh, C.M.P.M.; Francke, A.L.

    2015-01-01

    Background: Professionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people

  14. INTELLECTUAL DISABILITY IN INDIVIDULAS WITH MENTAL DISORDERS

    Directory of Open Access Journals (Sweden)

    Miodrag VUJOVIKJ

    2017-10-01

    included analysis of documentation, testing and survey. As the most suitable instruments for this research, I decided to use the test for measuring the IQ and level of mental deterioration of the respondents – WAIS (Wechsler Adult Intelligence Scale for the Macedonian population and Demographic questionnaire which determined the basic demographic characteristics of the respondents. With the help of these two instruments, the most important data for achieving the research goals were obtained, which were further processed and gave the end results of this research. Results: The processing of the data from the study showed that a significant proportion of the individuals with mental disorders do not have intellectual disability as a second diagnosis (p=0,0001, however in the population with mental disorders there will be an appearance of intellectual disability in a significantly greater extend in comparison to the general population (p=0,00096. The type of mental disorder has an effect on the appearance of intellectual disability(p=0,015. The gender (p=0,683 and the age (p=0,669 of the individuals with mental disorders are not affecting the appearance and the level of intellectual disability. There is no statically significant connection between the appearance and the level of mental deterioration and intellectual disability in individuals with mental disorders (p=0,921 and its appearance does not depend on the gender (p=0,606 and age (p=0,649 of the individual with a mental disorder. Conclusion: Considering the fact that there are a great number of people in the institutions for individuals with mental disorders, who despite having a mental disorder also have an intellectual disability as a second diagnosis, a lot more research is needed which will be beneficial for the better understanding of the condition and needs of these individuals, thus improving the diagnostics and the treatment, as well as the quality of their life.

  15. A survey of clinical nursing skills in intellectual disability nursing

    OpenAIRE

    McKeon, Michael

    2009-01-01

    In this study the question asked is: what clinical nursing skills are predominantly used in intellectual disability nursing? A survey of the nursing needs of people with moderate to severe intellectual disability in both residential and community units was undertaken with a questionnaire.The measure was a Likert design scale ranging across: skills used more than once a day, skills used daily, skills used weekly, skills used monthly, skills very rarely used, and skills never used.The results o...

  16. Training of Residential Social Care Staff to Meet the Needs of Older People with Intellectual Disabilities who Develop Age-Related Health Problems: An Exploratory Study.

    Science.gov (United States)

    Northway, Ruth; Jenkins, Robert; Holland-Hart, Daniella

    2017-09-01

    Despite awareness of the age related health needs of people with intellectual disabilities little is known regarding how residential social care staff are prepared to meet such needs. Data were gathered via semi-structured interviews from 14 managers of supported living settings. Transcripts were thematically analysed. Staff may work in supported living settings with no prior experience of care work, and previous knowledge/experience of supporting people in relation to their health is not required. Whilst health related training is provided there is a lack of specific training regarding healthy ageing, and training seems to be reactive to changing needs of tenants meaning that proactive monitoring for changes in health status may not occur. Whilst some training is provided for residential social care staff in relation to health and ageing a more proactive approach is required which should include a focus on healthy ageing. © 2016 John Wiley & Sons Ltd.

  17. Sexuality and Intellectual Disability.

    Science.gov (United States)

    Wenger, Jodi; Downes, Alison; Blum, Nathan; Augustyn, Marilyn

    Amad is a wonderful 16-year-old young man from Syria who has recently relocated to the United States from his war-torn native country. In his last few years in Syria, he was primarily at home with his mother, and they sought refuge with a maternal aunt in the United States seeking asylum and treatment of Amad's disability.At 8 years of age, he had intelligence testing in the United Arab Emirates, which showed a verbal intelligence score on the Wechsler intelligence scale for children (WISC) of 68 and a performance of 64. His working memory was 67 and his processing speed was 65. On arrival in the United States, his achievement was roughly at a third-grade level in Arabic. In the year and a half that he has been in the United States, he quickly improved his English skills, which he learned as a toddler. His father remains in Syria unable to safely immigrate and his mother is raising him alone in the United States with the help of her sister.They come to you for an urgent care visit because Amad recently was accused of sexual harassment by two girls at his high school. He is in a substantially separate program but is included for lunch and technology. While in the computer laboratory, he repeatedly approached the girls and asks them to "date" him, and on 1 occasion sat behind 1 girl and repeatedly reached out to stroke her long blonde hair.His mother is distraught because she recently found out that Amad also has a Facebook page and had been attempting to contact the same two girls on social media. The girls' parents recently threatened to file criminal harassment charges and Amad's mother comes to you asking for help with making Amad stop this activity. What would you do next?

  18. Genetics Home Reference: X-linked intellectual disability, Siderius type

    Science.gov (United States)

    ... Cleft Lip and Palate MalaCards: x-linked intellectual disability, siderius type March of Dimes: Cleft Lip and Cleft Palate Merck Manual Consumer Version: Intellectual Disability Orphanet: X-linked intellectual disability, Siderius type Patient ...

  19. Exploring the literature on music participation and social connectedness for young people with intellectual disability: A critical interpretive synthesis.

    Science.gov (United States)

    Murphy, Melissa Ai; McFerran, Katrina

    2017-12-01

    This article explores the literature on social connectedness and music for young people with disability. It then critically examines the level of congruence between the reported literature to date and current rights-based disability studies discourse. A critical interpretive synthesis was used to examine 27 articles referencing the use of music for social connectedness. Areas of focus in the review are the nature of connections being fostered in music programs, the use of voice and collaboration. The majority of music programs reported on closed groups. Outdated 'expert' models of working persist. The use of participants' voice in the literature is growing, although there is a lack of collaboration and negative reporting. A shift in thinking heralds greater collaboration with participants, although this could be broadened to include decisions on research agendas, planning and evaluation. There is also need for active fostering of broader socio-musical pathways.

  20. Interrogated with Intellectual Disabilities: The Risks of False Confession.

    Science.gov (United States)

    Schatz, Samson J

    2018-02-01

    False confessions happen. At least 245 people have been exonerated from convictions in cases featuring confessions that were simply not true. Confessions offer a narrative that allows law enforcement, and society in general, to neatly resolve cases with apparent clarity and closure. And yet the pressures officers place on suspects to provide that closure weigh disproportionately on the vulnerable, including individuals with intellectual disabilities. These individuals are disadvantaged at every step of the custodial interrogation, and they face heightened risks of falsely confessing. Moreover, the principal judicial safeguards against false confessions--assessing a suspect's Miranda waiver and determining whether a confession was voluntarily given within the bounds of the Fourteenth Amendment’s Due Process Clause--provide little protection for the innocent with intellectual disabilities. Few pieces of scholarship focus specifically on the heightened risks faced by individuals with intellectual disabilities throughout the process of police interrogation. This Note describes the various ways these individuals are disadvantaged. And it offers an additional data point illustrating the vulnerability of people with intellectual disabilities. This Note analyzes the 245 individuals (as of June 2, 2017) on the National Registry of Exonerations who have falsely confessed. Over one-quarter of them display indicia of intellectual disability. This percentage dwarfs the prevalence of people with intellectual disabilities in the general population and even exceeds most estimates of the proportion of the prison population suffering from intellectual disabilities. This Note concludes with several policy and doctrinal suggestions to better protect individuals with intellectual disabilities from the risks of false confession.

  1. Qualitative evaluation of a physical activity health promotion programme for people with intellectual disabilities in a group home setting.

    Science.gov (United States)

    Dixon-Ibarra, A; Driver, S; Nery-Hurwit, M; VanVolkenburg, H

    2018-01-01

    There is a lack of health promotion programming designed to change the physical activity environment of the group home setting. The Menu-Choice programme assists staff in creating physical activity goals alongside residents with intellectual disabilities and provides strategies to incorporate activity into the group home schedule. The purpose of this study was to complete a process evaluation of Menu-Choice utilizing qualitative methods. Twelve participants, who completed a 10-week pilot intervention (n = 7 staff, mean age 42; n = 5 residents, mean age 52), participated in face-to-face interviews. Participants represented five group home sites involved in the intervention. Meta-themes included: (i) Programme training, (ii) Programme implementation, (iii) Programme physical activity, (iv) Programme barriers, (v) Programme facilitators and (vi) Programme feedback. Changes in programme training and simplified programme materials are needed to accommodate identified barriers for implementation. The importance of obtaining increased agency support and policy change is highlighted. © 2017 John Wiley & Sons Ltd.

  2. Vision, spatial cognition and intellectual disability.

    Science.gov (United States)

    Giuliani, Fabienne; Schenk, Françoise

    2015-02-01

    Vision is the most synthetic sensory channel and it provides specific information about the relative position of distant landmarks during visual exploration. In this paper we propose that visual exploration, as assessed by the recording of eye movements, offers an original method to analyze spatial cognition and to reveal alternative adaptation strategies in people with intellectual disabilities (ID). Our general assumption is that eye movement exploration may simultaneously reveal whether, why, and how, compensatory strategies point to specific difficulties related to neurological symptoms. An understanding of these strategies will also help in the development of optimal rehabilitation procedures. Copyright © 2014 Elsevier Ltd. All rights reserved.

  3. Model of Intellectual Disability and the Relationship of Attitudes Towards the Sexuality of Persons with an Intellectual Disability.

    Science.gov (United States)

    Parchomiuk, Monika

    2013-06-01

    The following article discusses the relationship between the model of intellectual disability and the attitudes towards sexuality of people with disabilities. This correlation has been verified during the author's own research conducted on students of several medical faculties such as nursing, public health, emergency medical services and physiotherapy. Tools of the author's design have been used in the research. Likert-type scale "Perspective of intellectual disability" has been used to determine the model of disability seen from the medical (individual) or social perspective. To examine the attitudes towards sexuality two tools of the author's own design have been used: a Likert-type scale "The essence of sexuality in persons with an intellectual disability" which has been used to analyze the cognitive aspect of the attitudes, and a semantic differential with notions concerning physical and psychosocial aspects of sexuality including the affective-evaluative aspect. As expected, significant correlations have been found between the model and the attitudes both in the cognitive and the affective-evaluative aspect. Higher scores for the individual model correlated with: (a) lover scores for most aspects of sexuality of people with intellectual disability, (b) perceiving them as asexual, (c) biological determinism in the sexual sphere. The social model concurred with positive values given to sexuality of people with intellectual disability and its normalization in the sphere of its determinants and symptoms.

  4. Expanding Opportunities for Students with Intellectual Disability

    Science.gov (United States)

    Giangreco, Michael F.

    2017-01-01

    Research and experience tell us a great deal about how to successfully educate students with intellectual disability, but unfortunately this knowledge remains underutilized and inconsistently applied, writes researcher Michael F. Giangreco. Students with intellectual disability who have virtually identical profiles but live in different locales…

  5. Perspectives of Employees with Intellectual Disabilities on Themes Relevant to Their Job Satisfaction. An Explorative Study using Photovoice

    NARCIS (Netherlands)

    Akkerman, A.; Janssen, C.G.C.; Kef, S.; Meininger, H.P.

    2014-01-01

    Background: This study explored the perspectives of people with intellectual disabilities on themes relevant to their job satisfaction in integrated and sheltered employment. Method: The photovoice method was used. Nine participants with moderate to mild intellectual disabilities, working in

  6. Positive behaviour support training for staff for treating challenging behaviour in people with intellectual disabilities: a cluster RCT.

    Science.gov (United States)

    Hassiotis, Angela; Poppe, Michaela; Strydom, Andre; Vickerstaff, Victoria; Hall, Ian; Crabtree, Jason; Omar, Rumana; King, Michael; Hunter, Rachael; Bosco, Alessandro; Biswas, Asit; Ratti, Victoria; Blickwedel, Jessica; Cooper, Vivien; Howie, William; Crawford, Mike

    2018-03-01

    Preliminary studies have indicated that training staff in Positive Behaviour Support (PBS) may help to reduce challenging behaviour among people with intellectual disability (ID). To evaluate whether or not such training is clinically effective in reducing challenging behaviour in routine care. The study also included longer-term follow-up (approximately 36 months). A multicentre, single-blind, two-arm, parallel-cluster randomised controlled trial. The unit of randomisation was the community ID service using an independent web-based randomisation system and random permuted blocks on a 1 : 1 allocation stratified by a staff-to-patient ratio for each cluster. Community ID services in England. Adults (aged > 18 years) across the range of ID with challenging behaviour [≥ 15 Aberrant Behaviour Checklist - Community total score (ABC-C T )]. Manual-assisted face-to-face PBS training to therapists and treatment as usual (TAU) compared with TAU only in the control arm. Carer-reported changes in challenging behaviour as measured by the ABC-C T over 12 months. Secondary outcomes included psychopathology, community participation, family and paid carer burden, family carer psychopathology, costs of care and quality-adjusted life-years (QALYs). Data on main outcome, service use and health-related quality of life were collected for the 36-month follow-up. A total of 246 participants were recruited from 23 teams, of whom 109 were in the intervention arm (11 teams) and 137 were in the control arm (12 teams). The difference in ABC-C T between the intervention and control arms [mean difference -2.14, 95% confidence interval (CI) -8.79 to 4.51; p  = 0.528] was not statistically significant. No treatment effects were found for any of the secondary outcomes. The mean cost per participant in the intervention arm was £1201. Over 12 months, there was a difference in QALYs of 0.076 in favour of the intervention (95% CI 0.011 to 0.140 QALYs) and a 60% chance that the

  7. The role of staff in health promotion in community residences for people with intellectual disabilities: variation in views among managers and caregivers.

    Science.gov (United States)

    Bergström, Helena; Wihlman, Ulla

    2011-09-01

    Managers and caregivers in community residences for people with intellectual disabilities are expected both to promote residents' health and to support their autonomy. The aim of this article was to explore variation in views among managers and caregivers on the role of staff in health promotion. A qualitative study was conducted using semi-structured interviews with six managers and six caregivers. The analysis used a phenomenographic approach to categorize variation in views. We identified five qualitatively different main categories of roles staff play in health promotion: the parent, the manipulator, the coach, the educator and the libertarian. In addition lifestyle-related risk factors for ill-health and barriers to a healthy lifestyle were analysed and described using qualitative content analysis. The results highlight the ethical conflict that faces staff trying to support a healthy lifestyle as well as the autonomy of the residents.

  8. Psychometric properties of the AIR Self-Determination Scale: the Chinese version (AIR SDS-C) for Chinese people with intellectual disabilities.

    Science.gov (United States)

    Wong, P K S; Wong, D F K; Zhuang, X Y; Liu, Y

    2017-03-01

    The construct of self-determination has received considerable attention in the international field of intellectual disabilities (ID). Recently, there has been a rapid development of this construct in Chinese societies including Hong Kong. However, there is no locally validated instrument to measure self-determination in people with ID. This article explains the validation process of the AIR Self-Determination Scale - Chinese version (AIR SDS-C) adapted from the 24-item AIR Self-Determination Scale, developed by Wolman and his colleagues, which is used in school setting. People with mild/moderate ID aged 15 years or above were recruited from special schools and social services units in different regions of Hong Kong. Factor analysis and reliability tests were conducted. Data for a total of 356 participants were used for the analysis. A confirmatory factor analysis was performed to test the factorial construct, and Mplus 7.0 was used for the analysis. The factor structure proposed in the original English version was supported by the data, and all factor loadings were between 0.42 and 0.76. The whole scale achieved good reliability (Cronbach's α = 0.88 and ω = 0.90). The AIR SDS-C appears to be a valid and reliable scale. This study examined adult groups as well as student groups. The application of the scale can thus be extended to a wider population. The implications for theory building and practice are discussed. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  9. Positive Group Psychotherapy Modified for Adults with Intellectual Disabilities

    Science.gov (United States)

    Tomasulo, Daniel J.

    2014-01-01

    Mental health disorders are considerably more prevalent among people with intellectual disabilities than in the general population, yet research on psychotherapy for people with dual diagnosis is scarce. However, there is mounting evidence to show that adults with a dual diagnosis can find help through group therapy and have more productive and…

  10. 'To move or not to move': a national survey among professionals on beliefs and considerations about the place of end-of-life care for people with intellectual disabilities

    NARCIS (Netherlands)

    Bekkema, N.; de Veer, A.J.E.; Wagemans, A.M.A.; Hertogh, C.M.P.M.; Francke, A.L.

    2015-01-01

    Background: The aim of this article was to investigate the beliefs and considerations of professionals concerning an appropriate environment for end-of-life care for people with intellectual disabilities (ID). Method: A survey questionnaire was composed based on a scan of relevant literature and the

  11. ‘To move or not to move’: a national survey among professionals on beliefs and considerations about the place of end-of-life care for people with intellectual disabilities.

    NARCIS (Netherlands)

    Bekkema, N.; Veer, A.J.E. de; Wagemans, A.M.A.; Hertogh, C.M.P.M.; Francke, A.L.

    2015-01-01

    Background: The aim of this article was to investigate the beliefs and considerations of professionals concerning an appropriate environment for end-of-life care for people with intellectual disabilities (ID). Method: A survey questionnaire was composed based on a scan of relevant literature and the

  12. CORRELATION BETWEEN AGGRESSIVE BEHAVIOUR AND STRESS IN PEOPLE WITH INTELLECTUAL DISABILITY IN RELATION TO THE TYPE OF HOUSING

    Directory of Open Access Journals (Sweden)

    Daniela TAMAŠ

    2016-09-01

    Full Text Available Background: Several research findings indicate that aggression in individuals with intellectual disability (ID is significantly associated with environmental, housing and living conditions. The aim of this study is to determine levels and forms of aggressive behaviour found among individuals with ID; also examine levels of stress experienced as a result of housing conditions and relationships between aggressive behaviours and stressful experiences encountered among individuals with ID living in different housing types. Method: A total of 122 participants participated in the study, 51 of whom reside in institutions, 38 of whom live with families and 33 of whom participate in supported housing programmes. Following instruments have been used: The Lifestress Inventory, The Adult Scale of Hostility and Aggression Reactive-Proactive (A-SHARP. Results: The results reveal that there is a connection between housing types and levels and forms of aggressive behaviour and the level of stress experienced by the individuals with ID. Aggressive behaviour is least pronounced among the participants living in supported housing programmes (verbal aggression: p=0.001; bullying: p=0.002; covert aggression; p=0.003; hostility affect: p=0.002 and physical aggression: p=0.001. Among the participants living in institutions and with families is no statistically significant difference in terms of the level of any form of aggressive behaviour. Participants from supported housing programmes showed significantly lower levels of stress in comparison to the other two sub-samples (p=0.000. Conclusions: There is a statistically significant correlation between aggressive behaviour among individuals with ID and experienced stress, depending on the type of the participants housing.

  13. Comparison of training and competition opportunities in leisure time among people with intellectual disabilities in selected European countries

    Directory of Open Access Journals (Sweden)

    Lucie Francova

    2013-09-01

    Full Text Available Leisure time activities are important for individuals with an intellectual disability (ID Table tennis (TT seems to be the most suitable and accessible activity in relation to motor skills and low financial requirements. The aim of the project was to investigate the opportunities for the TT training and competition among individuals with ID in the following European countries: Austria, the Czech Republic, England, and Hungary. Those countries regularly participate in international TT events organized by Inas. The coaches of the mentioned countries were questioned about the TT training process of persons with ID during their leisure time. The survey was completed by 4 coaches (3 male and 1female, who work at various levels (from the lowest level in sports clubs to the top level in national teams in each country. The research findings showed that all of the surveyed couches practiced trainings frequency two times per week. In addition to national games, all the countries organize competitions at regional levels and par¬ti¬ci¬pa¬te in international events. The data reveal that training camps lasting from 5 to 14 days per year are organized in all the sur¬veyed countries. The survey found certain training options, which correspond more to the standard of the recreational sport than to the standard of the top-level sport. A positive finding was the possibility of training with the intact population, which may be con¬si¬de¬red as an important phenomenon of social inclusion.

  14. Building Back Wards in a 'Post' Institutional Era: Hospital Confinement, Group Home Eviction, and Ontario's Treatment of People Labelled with Intellectual Disabilities

    Directory of Open Access Journals (Sweden)

    Natalie Spagnuolo

    2016-12-01

    Full Text Available Although Ontario has closed the regional centres that were intended for people labelled with intellectual disabilities and apologized to survivors, the institutionalization of disabled people persists in other forms in the province. This article demonstrates that the eligibility criteria established by privately-operated and publically-funded group homes contributes to the use of what will be termed 'back ward' placements in institutions such as hospitals and nursing homes. While group homes themselves have been – quite rightly – criticized as neo-institutional forms of residential support, they also play a role in shaping more overt forms of confinement by refusing to tailor their services to the needs of certain individuals. What follows is an analysis of residential support systems that builds upon case studies and reports to expose how impairment hierarchies, based on ranked support needs, determine who will end up in these 'back wards' and who will be offered a place in a group home.

  15. Children with intellectual disability and hospice utilization.

    Science.gov (United States)

    Lindley, Lisa C; Colman, Mari Beth; Meadows, John T

    2017-02-01

    Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital conditions, and comorbidities. Yet, little is known about hospice care for children with intellectual disability. The purpose of this study was to explore the relationship between intellectual disability and hospice utilization. Additionally, we explored whether intellectual disability combined with motor dysfunction, progressive congenital conditions, and comorbidities influenced pediatric hospice utilization. Using a retrospective cohort design and data from the 2009 to 2010 California Medicaid claims files, we conducted a multivariate analysis of hospice utilization. This study shows that intellectual disability was negatively related to hospice enrollment and length of stay. We also found that when children had both intellectual disability and comorbidities, there was a positive association with enrolling in hospice care. A number of clinical implications can be drawn from the study findings that hospice and palliative care nurses use to improve their clinical practice of caring for children with ID and their families at end of life.

  16. Why do seizures occur when they do? Situations perceived to be associated with increased or decreased seizure likelihood in people with epilepsy and intellectual disability.

    Science.gov (United States)

    Illingworth, Josephine L; Watson, Peter; Ring, Howard

    2014-10-01

    Seizure precipitants are commonly reported in the general population of people with epilepsy. However, there has been little research in this area in people with epilepsy and intellectual disability (ID). We conducted a survey of the situations associated with increased or decreased seizure likelihood in this population. The aim of the research was to identify situations of increased seizure likelihood (SISLs) and situations of decreased seizure likelihood (SDSLs) reported by carers of people with an ID and epilepsy. Three study groups were investigated: two groups comprising individuals with ID associated with a specific genetic diagnosis - Rett syndrome or fragile X syndrome - and one group consisting of individuals with a range of other etiologies. Responses relating to 100 people were received: 44 relating to people with Rett syndrome, 25 to people with fragile X syndrome, and 31 to people whose ID had some other etiologies. Ninety-eight percent of the respondents reported at least one SISL, and 60% reported at least one SDSL. Having more seizure types and greater seizure frequency were associated with a higher number of SISLs reported. The most commonly reported SISLs and SDSLs for each of the three groups are presented. The most common SISL overall was illness, which was reported as an SISL by 71% of the respondents. There was less consensus with regard to SDSLs. These findings provide a greater understanding of when seizures occur in those with ID and epilepsy, with possible implications for adjunctive behavioral management of seizures in those with treatment-refractory epilepsy. Copyright © 2014. Published by Elsevier Inc.

  17. Management challenges in children with both epilepsy and intellectual disability.

    Science.gov (United States)

    Buelow, Janice M; Shore, Cheryl P

    2010-01-01

    People who have both epilepsy and intellectual disability have significant problems requiring skilled health care management. Clinical nurse specialists have the unique opportunity to work with these people and their families to help them develop self-management and family management skills. In this article, we describe some factors associated with intellectual disability and epilepsy. In addition, we address the management challenges associated with this dual diagnoses in 3 areas: (1) problems associated with the management of seizure and prescription management, (2) problems associated with the seizure management other than prescriptions, and (3) life management issues. Finally, we suggest ways that clinical nurse specialists can foster development of management skills.

  18. Evaluating Youtube Platform Usability by People with Intellectual Disabilities (A User Experience Case Study Performed in a Six-Month Period

    Directory of Open Access Journals (Sweden)

    Tânia Rocha

    2017-01-01

    Full Text Available A comparison study of the Web interaction evolution of a group of people with intellectual disabilities, when performing search tasks using the YouTube platform, is presented. For the effect, we compare results in two assessment moments (the second assessment moment was performed, within the 6 months after the first one. We aimed at evaluating the evolution of their digital skills by comparing two assessment moments through the following usability variables: effectiveness, we register the rate of successful complete conclusion of Web search activities using the YouTube; efficiency, where it was register: time of task conclusion, number and type of difficulties found and errors made; satisfaction, the rate of acceptance and comfort when performing the tasks; and, autonomy indicators. The results revealed that participants depicted more learning skills when performing the second assessment moment, which is indicated by the number of participants who were able to conclude the activities and it's also confirmed by the prominent results of the second assessment moment. When it comes to errors, they made more errors in the first assessment moment in general. While handling the input devices the participants had a better performance with the mouse than the keyboard however in the second assessment moment they improved their skills with the mouse and keyboard input device. However, we believed that the keyboard will never be a device that they can be autonomous with due to their reading/ writing difficulties, which itself represents a didactic challenge when it comes to the very presentation of appropriate methodologies and techniques that may help them overcome such problem. Overall, users with intellectual disabilities had a good experience with the YouTube interface because they were motivated and satisfied during the execution of the tasks, however they were not autonomy with the search option.

  19. Caregivers' perception of factors associated with a healthy diet among people with intellectual disability living in community residences: A Concept mapping method.

    Science.gov (United States)

    Ruud, Marte Pilskog; Raanaas, Ruth Kjærsti; Bjelland, Mona

    2016-12-01

    Many people with intellectual disabilities (ID) living in community-based residences have been found to have unhealthy diet and weight disturbances. In Norway, a majority of people with ID live in such residences. The aim of the study was to examine factors affecting the caregivers' opportunity to promote a healthy diet among the residents. A concept mapping methodology was adopted, including group-based brainstorming, idea synthesising, sorting, rating and analysis of the results. Informants were caregivers in four different community residences for people with mild to moderate ID in the southeast of Norway. A total of 13 informants were recruited (12 females and 1 male), and 10 informants completed two sessions. Eight clusters were identified as affecting the caregivers' ability to promote a healthy diet: "Availability and accessibility", "Guidance and autonomy", "Competence among staff", "Planning and involvement", "Customization", "External conditions affecting staff", "Legislation, rules and structure" and "Everyday challenges", each including both barriers and facilitators. Multiple factors affect the caregivers' ability to promote a healthy diet. Caregivers' opportunity to promote a healthy diet is complex. Availability and accessibility of healthy food is crucial, but a healthy diet also requires time and competence among the caregivers. Copyright © 2016 Elsevier Ltd. All rights reserved.

  20. Mortality among a Cohort of Persons with an Intellectual Disability in New South Wales, Australia

    Science.gov (United States)

    Florio, Tony; Trollor, Julian

    2015-01-01

    Objectives: The main objective of the study was to compare mortality for people with an intellectual disability (ID) to the general population in New South Wales (NSW), Australia. A second objective was to provide mortality data for people with an intellectual disability from NSW in a standardized format, which allows for international comparisons…

  1. Family Members' Reports of the Technology Use of Family Members with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Palmer, S. B.; Wehmeyer, M. L.; Davies, D. K.; Stock, S. E.

    2012-01-01

    Background: A nationwide survey of family members of people with intellectual and developmental disabilities ranging in age from birth through adulthood was conducted to replicate a similar effort by Wehmeyer and update the knowledge base concerning technology use by people with intellectual and developmental disabilities. Method: Survey responses…

  2. Health Information Infrastructure for People with Intellectual and Developmental Disabilities (I/DD) Living in Supported Accommodation: Communication, Co-Ordination and Integration of Health Information.

    Science.gov (United States)

    Dahm, Maria R; Georgiou, Andrew; Balandin, Susan; Hill, Sophie; Hemsley, Bronwyn

    2017-10-25

    People with intellectual and/or developmental disability (I/DD) commonly have complex health care needs, but little is known about how their health information is managed in supported accommodation, and across health services providers. This study aimed to describe the current health information infrastructure (i.e., how data and information are collected, stored, communicated, and used) for people with I/DD living in supported accommodation in Australia. It involved a scoping review and synthesis of research, policies, and health documents relevant in this setting. Iterative database and hand searches were conducted across peer-reviewed articles internationally in English and grey literature in Australia (New South Wales) up to September 2015. Data were extracted from the selected relevant literature and analyzed for content themes. Expert stakeholders were consulted to verify the authors' interpretations of the information and content categories. The included 286 sources (peer-reviewed n = 27; grey literature n = 259) reflect that the health information for people with I/DD in supported accommodation is poorly communicated, coordinated and integrated across isolated systems. 'Work-as-imagined' as outlined in policies, does not align with 'work-as-done' in reality. This gap threatens the quality of care and safety of people with I/DD in these settings. The effectiveness of the health information infrastructure and services for people with I/DD can be improved by integrating the information sources and placing people with I/DD and their supporters at the centre of the information exchange process.

  3. A cluster randomised controlled trial of a manualised cognitive behavioural anger management intervention delivered by supervised lay therapists to people with intellectual disabilities.

    Science.gov (United States)

    Willner, P; Rose, J; Jahoda, A; Stenfert Kroese, B; Felce, D; MacMahon, P; Stimpson, A; Rose, N; Gillespie, D; Shead, J; Lammie, C; Woodgate, C; Townson, J K; Nuttall, J; Cohen, D; Hood, K

    2013-05-01

    Anger is a frequent problem for many people with intellectual disabilities, and is often expressed as verbal and/or physical aggression. Cognitive-behaviour therapy (CBT) is the treatment of choice for common mental health problems, but CBT has only recently been adapted for people with intellectual disabilities. Anger is the main psychological presentation in which controlled trials have been used to evaluate CBT interventions for people with intellectual disabilities but these do not include rigorous randomised studies. To evaluate (1) the impact of a staff-delivered manualised CBT anger management intervention on (a) reported anger among people with mild to moderate intellectual disabilities, and (b) anger coping skills, aggression, mental health, quality of life and costs of health and social care; (2) factors that influence outcome; and (3) the experience of service users, lay therapists and service managers. A cluster randomised controlled trial based on 30 day centres (15 intervention and 15 control). Intention-to-treat comparisons of outcomes used a two-level linear regression model to allow for clustering within centres with baseline outcome levels as a covariate. Comparison of cost data used non-parametric bootstrapping. Qualitative analysis used interpretative phenomenological analysis and thematic analysis. Recruited day centres had four-plus service users with problem anger who were prepared to participate, two-plus staff willing to be lay therapists, a supportive manager and facilities for group work, and no current anger interventions. A total of 212 service users with problem anger were recruited. Thirty-three were deemed ineligible (30 could not complete assessments and three withdrew before randomisation). Retention at follow-up was 81%, with 17 withdrawals in each arm. Two to four staff per centre were recruited as lay therapists. Eleven service users, nine lay therapists and eight managers were interviewed. The manualised intervention comprised

  4. Social support and intellectual disabilities: a comparison between social networks of adults with intellectual disability and those with physical disability.

    Science.gov (United States)

    Lippold, T; Burns, J

    2009-05-01

    Social support has been identified as a major protective factor in preventing mental health problems and also as a major contributor to quality of life. People with intellectual disabilities (ID) have been identified as having limited social support structures. Interventions have been focused on promoting their social presence and integration. However, previous studies have shown that this does not always lead to the formation of social relationships. To date few studies have looked at how having an ID leads to impoverished social networks. This study aimed to do this by contrasting the social relationships of people with physical disabilities (PD) and people with ID. Two groups of participants were recruited; 30 people with mild ID and 17 people with PD. Social and functional support networks were assessed, in addition to life experiences. Between and within group differences were then explored statistically. Adults with ID had more restricted social networks than PD, despite being involved in more activities. Social support for adults with ID was mainly provided by family and carers and few relationships with non-disabled people were identified. In contrast adults with PD had larger social networks than had been reported in the mainstream literature and had a balance of relationships with disabled and non-disabled people. The results suggest that there are additional processes attached to having an ID, which lead to continued impoverished lifestyles. The findings also endorse other work that suggests being physically integrated and engaged in a wide range of activities does not guarantee good social and emotional support.

  5. 228 THE INTELLECTUAL DISABLED (MENTALLY IMPAIRED) IN ...

    African Journals Online (AJOL)

    Elizabeth

    The Intellectual disabled child is characterized by significantly sub average general intellectual ... by abnormal development, learning difficulties, and problem in social ... softened and classifications redefined some what to mild (IQ of 55 –70) moderate .... parents do not like the isolation of their children from normal children.

  6. The Sexuality of Adults with Intellectual Disability in Poland.

    Science.gov (United States)

    Kijak, Remigiusz

    2013-06-01

    Sexuality is one of the most important aspects of human life that relates to sex, one's identification, sexual role, sexual preferences, eroticism, pleasure and intimacy. It fulfils such functions as procreative, hedonistic and relationship-building as well as constitutes an integral part of human's personality. The sexuality of people with intellectual disability is a special case - both from medical, pedagogical, psychological and ethical point of view. Little available research shows that it may become a significant factor that modifies their psychological and sexual functioning. The basic poll involved altogether 133 people with mild intellectual disability. The work was carried out in 11 schools and special institutions of three provinces in Poland: kujawsko - pomorskie, wielkopolskie and dolnośląskie (provinces of Kujavy and Pomerania, Great Poland and Lower Silesia) The respondents qualified to take part in the poll constituted a very uniform group - homogenous as regards their age of 18-25 as well as IQ level that was average for the people with higher degree of intellectual disability (HDID). Their age was of importance as in that life period one can observe the formation of first partner relationships with the clear aim of establishing a family. It is accompanied by a quick development of sexual desire and taking up various forms of sexual activity. People with intellectual disability don't form a homogenous group as regards their psychological and sexual development. In this group, one can observe both different forms of clinical mental handicap which definitely affects the whole process of sexual development. The sexual development is delayed by an average period of 3 years. The people with intellectual disability take up mostly autoerotic behaviour whereas partner relationships wthin that group are more seldom. The phenomenon of sexuality of people with higher degree of intellectual disability is an issue that needs further constant analysis. The

  7. Ageing in individuals with intellectual disability: issues and concerns in Hong Kong.

    Science.gov (United States)

    Tse, M My; Kwan, R Yc; Lau, J L

    2018-02-01

    The increasing longevity of people with intellectual disability is testimony to the positive developments occurring in medical intervention. Nonetheless, early-onset age-related issues and concerns cause deterioration of their overall wellbeing. This paper aimed to explore the issues and concerns about individuals with intellectual disability as they age. Articles that discussed people older than 30 years with an intellectual disability and those that identified ageing health issues and concerns were included. Only studies reported in English from 1996 to 2016 were included. We searched PubMed, Google Scholar, and Science Direct using the terms 'intellectual disability', 'ageing', 'cognitive impairment', 'health', and 'screening'. Apart from the early onset of age-related health problems, dementia is more likely to develop by the age of 40 years in individuals with intellectual disability. Geriatric services to people with intellectual disability, however, are only available for those aged 60 years and older. Cognitive instruments used for the general population are not suitable for people with intellectual disability because of floor effects. In Hong Kong, the Chinese version of the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities is the only validated instrument for people with intellectual disability. The use of appropriate measurement tools to monitor the progression of age-related conditions in individuals with intellectual disability is of great value. Longitudinal assessment of cognition and function in people with intellectual disability is vital to enable early detection of significant deterioration. This allows for therapeutic intervention before substantial damage to the brain occurs such as dementia that hastens cognitive and functional decline.

  8. Exploring academics' views on designs, methods, characteristics and outcomes of inclusive health research with people with intellectual disabilities: a modified Delphi study

    Science.gov (United States)

    Frankena, T K; Naaldenberg, J; Cardol, M; Meijering, J V; Leusink, G; van Schrojenstein Lantman-de Valk, H M J

    2016-01-01

    Background The British Medical Journal's (BMJ's) patient revolution strives for collaboration with patients in healthcare and health research. This paper studies collaboration with people with intellectual disabilities (ID) in health research, also known as inclusive health research. Currently, transparency and agreement among academics is lacking regarding its main aspects, preventing upscaling of the patient revolution. Objective This study aims to gain agreement among academics on 3 aspects of inclusive health research for people with ID: (1) designs and methods, (2) most important characteristics and (3) outcomes. Design A Delphi study was conducted with academics with experience in inclusive (health) research and on people with ID. The study consisted of 2 sequential questionnaire rounds (n=24; n=17), followed by in-depth interviews (n=10). Results Academics agreed on (1) a collaborative approach to be most suitable to inclusive health research, (2) characteristics regarding the accessibility and facilitation of inclusive health research, and (3) several outcomes of inclusive health research for people with ID and healthcare. Other characteristics agreed on included: atmosphere, relationship, engagement, partnership and power. It was stressed that these characteristics ensure meaningful inclusion. Interviewed academics voiced the need for a tool supporting the facilitation and evaluation of inclusive health research. There was ambiguity as to what this tool should comprise and the extent to which it was possible to capture the complex process of inclusive health research. Discussion and conclusions This study underlines the need for transparency, facilitation and evaluation of inclusive health research. The need for in-depth interviews after 2 Delphi rounds underlines its complexity and context dependence. To increase process transparency, future research should focus on gaining insight into inclusive health research in its context. A tool could be developed

  9. A Descriptive Investigation of Dysphagia in Adults with Intellectual Disabilities

    Science.gov (United States)

    Chadwick, Darren D.; Jolliffe, J.

    2009-01-01

    Background: Dysphagia has rarely been investigated in adults with intellectual disabilities (ID) despite being a serious condition affecting health and quality of life. Method: This study collected information about 101 adults with ID, living in community settings, referred for an assessment of their eating and drinking. Ninety-nine people were…

  10. Conceptions of Work in Italian Adults with Intellectual Disability

    Science.gov (United States)

    Ferrari, Lea; Nota, Laura; Soresi, Salvatore

    2008-01-01

    People's ideas about work can greatly affect the ways in which they characterize their own work experience and their lives. The first aim of the present study was to analyze the concept of work in individuals with mild or moderate intellectual disability working in competitive or sheltered work settings and, second, to compare the notions of work…

  11. Same-Sex Relationships and Women with Intellectual Disabilities

    Science.gov (United States)

    Burns, Jan; Davies, Danielle

    2011-01-01

    Background: Limited existing research looking at homosexuality and people with intellectual disabilities has identified a low level of knowledge, homophobic attitudes and negative experiences for gay men. Mainstream research has identified traditional gender role beliefs to be highly associated with negative attitudes towards homosexuality. This…

  12. An Assessment of Intellectual Disability Among Aboriginal Australians

    Science.gov (United States)

    Glasson, E. J.; Sullivan, S. G.; Hussain, R.; Bittles, A. H.

    2005-01-01

    Background: The health and well-being of Indigenous people is a significant global problem, and Aboriginal Australians suffer from a considerably higher burden of disease and lower life expectancy than the non-Indigenous population. Intellectual disability (ID) can further compromise health, but there is little information that documents the…

  13. Caregiver Attitudes to Gynaecological Health of Women with Intellectual Disability

    Science.gov (United States)

    Lin, Lan-Ping; Lin, Jin-Ding; Chu, Cordia M.; Chen, Li-Mei

    2011-01-01

    Background: There is little information available related to the reproductive health of people with intellectual disability (ID). The aims of the present study are to describe caregiver attitudes and to examine determinants of gynaecological health for women with ID. Method: We recruited 1152 caregivers (response rate = 71.87%) and analysed their…

  14. Spinal and Limb Abnormalities in Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Lin, Jin-Ding; Lin, Pei-Ying; Lin, Lan-Ping; Lai, Chia-Im; Leu, Yii-Rong; Yen, Chia-Feng; Hsu, Shang-Wei; Chu, Chi-Ming; Wu, Chia-Ling; Chu, Cordia M.

    2010-01-01

    There are not many studies pertaining to the spinal or limb abnormalities in people with intellectual disabilities, without a clear profile of these deformities of them, efforts to understand its characters and improve their quality of life will be impossible. Therefore, this paper aims to describe the prevalence and related factors of spinal and…

  15. Incidence of Dementia in Older Adults with Intellectual Disabilities

    Science.gov (United States)

    Strydom, Andre; Chan, Trevor; King, Michael; Hassiotis, Angela; Livingston, Gill

    2013-01-01

    Dementia may be more common in older adults with intellectual disability (ID) than in the general population. The increased risk for Alzheimer's disease in people with Down syndrome (DS) is well established, but much less is known about dementia in adults with ID who do not have DS. We estimated incidence rates from a longitudinal study of…

  16. Motivational Aspects of Gaming for Students with Intellectual Disabilities

    Science.gov (United States)

    Saridaki, Maria; Mourlas, Constantinos

    2011-01-01

    The attention to learners with special needs, in particular those with intellectual disabilities, is an area of continuous development. It is considered important to develop adaptive educational solutions for the integration of people with educational difficulties according to their needs. Digital games provide an attractive and direct platform in…

  17. Multimorbidity and Polypharmacy Are Independently Associated with Mortality in Older People with Intellectual Disabilities: A 5-Year Follow-Up from the HA-ID Study

    Science.gov (United States)

    Schoufour, Josje D.; Oppewal, Alyt; van der Maarl, Hanne J. K.; Hermans, Heidi; Evenhuis, Heleen M.; Hilgenkamp, Thessa I. M.; Festen, Dederieke A.

    2018-01-01

    We studied the association between multimorbidity, polypharmacy, and mortality in 1,050 older adults (50+) with intellectual disability (ID). Multimorbidity (presence of = 4 chronic health conditions) and polypharmacy (presence = 5 chronic medication prescriptions) were collected at baseline. Multimorbidity included a wide range of disorders,…

  18. Relabelling behaviour : The effects of psycho-education on the perceived severity and causes of challenging behaviour in people with profound intellectual and multiple disabilities

    NARCIS (Netherlands)

    Poppes, P.; Putten, van der Annette; Post, W.; Frans, N.; ten Brug, A.; van Es, A.; Vlaskamp, C.

    2016-01-01

    BackgroundPrevalence rates of challenging behaviour are high in children and adults with profound intellectual and multiple disabilities (PIMD). Moreover, many of these behaviours are observed daily. Direct support staff report that most challenging behaviour identified has little impact on the

  19. Relabelling Behaviour. The Effects of Psycho-Education on the Perceived Severity and Causes of Challenging Behaviour in People with Profound Intellectual and Multiple Disabilities

    Science.gov (United States)

    Poppes, P.; van der Putten, A.; Post, W.; Frans, N.; ten Brug, A.; van Es, A.; Vlaskamp, C.

    2016-01-01

    Background: Prevalence rates of challenging behaviour are high in children and adults with profound intellectual and multiple disabilities (PIMD). Moreover, many of these behaviours are observed daily. Direct support staff report that most challenging behaviour identified has little impact on the person with PIMD and attribute challenging…

  20. Look closer : The alertness of people with profound intellectual and multiple disabilities during multi-sensory storytelling, a time sequential analysis

    NARCIS (Netherlands)

    Ten Brug, Annet; Munde, Vera S.; van der Putten, Annette A. J.; Vlaskamp, Carla

    2015-01-01

    Introduction: Multi-sensory storytelling (MSST) is a storytelling method designed for individuals with profound intellectual and multiple disabilities (PIMD). It is essential that listeners be alert during MSST, so that they become familiar with their personalised stories. Repetition and the

  1. The role of nurses/social workers in using a multidimensional guideline for diagnosis of anxiety and challenging behaviour in people with intellectual disabilities

    NARCIS (Netherlands)

    Pruijssers, A.; Meijel, B. van; Maaskant, M.; Keeman, N.; Teerenstra, S.; Achterberg, T. van

    2015-01-01

    AIMS AND OBJECTIVES: This study seeks (1) to investigate the impact of the implementation of the 'Diagnostic Guideline for Anxiety and challenging behaviours in clients with intellectual disability' on nurses/social workers' knowledge and self-efficacy; and (2) to evaluate the role of nurses/social

  2. The role of nurses/social workers in using a multidimensional guideline for diagnosis of anxiety and challenging behaviour in people with intellectual disabilities

    NARCIS (Netherlands)

    Pruijssers, A.; van Meijel, B.; Maaskant, M.; Keeman, N.; Teerenstra, S.; van Achterberg, T.

    2015-01-01

    Aims and objectives: This study seeks (1) to investigate the impact of the implementation of the 'Diagnostic Guideline for Anxiety and challenging behaviours in clients with intellectual disability' on nurses/social workers' knowledge and self-efficacy; and (2) to evaluate the role of nurses/social

  3. Look Closer: The Alertness of People with Profound Intellectual and Multiple Disabilities during Multi-Sensory Storytelling, a Time Sequential Analysis

    Science.gov (United States)

    Ten Brug, Annet; Munde, Vera S.; van der Putten, Annette A.J.; Vlaskamp, Carla

    2015-01-01

    Introduction: Multi-sensory storytelling (MSST) is a storytelling method designed for individuals with profound intellectual and multiple disabilities (PIMD). It is essential that listeners be alert during MSST, so that they become familiar with their personalised stories. Repetition and the presentation of stimuli are likely to affect the…

  4. Epigenetic Etiology of Intellectual Disability.

    Science.gov (United States)

    Iwase, Shigeki; Bérubé, Nathalie G; Zhou, Zhaolan; Kasri, Nael Nadif; Battaglioli, Elena; Scandaglia, Marilyn; Barco, Angel

    2017-11-08

    Intellectual disability (ID) is a prevailing neurodevelopmental condition associated with impaired cognitive and adaptive behaviors. Many chromatin-modifying enzymes and other epigenetic regulators have been genetically associated with ID disorders (IDDs). Here we review how alterations in the function of histone modifiers, chromatin remodelers, and methyl-DNA binding proteins contribute to neurodevelopmental defects and altered brain plasticity. We also discuss how progress in human genetics has led to the generation of mouse models that unveil the molecular etiology of ID, and outline the direction in which this field is moving to identify therapeutic strategies for IDDs. Importantly, because the chromatin regulators linked to IDDs often target common downstream genes and cellular processes, the impact of research in individual syndromes goes well beyond each syndrome and can also contribute to the understanding and therapy of other IDDs. Furthermore, the investigation of these disorders helps us to understand the role of chromatin regulators in brain development, plasticity, and gene expression, thereby answering fundamental questions in neurobiology. Copyright © 2017 the authors 0270-6474/17/3710773-10$15.00/0.

  5. Social pedagogy as a model to provide support for siblings of children with intellectual disabilities: A report of the views of the children and young people using a sibling support group.

    Science.gov (United States)

    Carter, Sid; Cook, James; Sutton-Boulton, Gary; Ward, Vicki; Clarke, Steve

    2016-03-01

    The experiences of non-disabled children growing up with a sibling with an intellectual disability vary considerably, with reported impact ranging from increased mental health problems through evaluations of life enhancement. However, there is evidence that the net impact is neutral to positive, which was supported by the findings of this report of a service evaluation survey. The value of providing support to those young siblings is however clear. An established method of support is within a group of peers who also have a sibling with an intellectual disability, though no specific method for running this type of group has yet been fully explored. This article reports the views of 39 children taking part in such a group, analysing their perspective through a proposed model for the operation of sibling groups: social pedagogy. It was found that the closer the group's activities were to social pedagogy, the more supported the children and young people felt. © The Author(s) 2015.

  6. Central nervous system medication use in older adults with intellectual disability: Results from the successful ageing in intellectual disability study.

    Science.gov (United States)

    Chitty, Kate M; Evans, Elizabeth; Torr, Jennifer J; Iacono, Teresa; Brodaty, Henry; Sachdev, Perminder; Trollor, Julian N

    2016-04-01

    Information on the rates and predictors of polypharmacy of central nervous system medication in older people with intellectual disability is limited, despite the increased life expectancy of this group. This study examined central nervous system medication use in an older sample of people with intellectual disability. Data regarding demographics, psychiatric diagnoses and current medications were collected as part of a larger survey completed by carers of people with intellectual disability over the age of 40 years. Recruitment occurred predominantly via disability services across different urban and rural locations in New South Wales and Victoria. Medications were coded according to the Monthly Index of Medical Specialties central nervous system medication categories, including sedatives/hypnotics, anti-anxiety agents, antipsychotics, antidepressants, central nervous system stimulants, movement disorder medications and anticonvulsants. The Developmental Behaviour Checklist for Adults was used to assess behaviour. Data were available for 114 people with intellectual disability. In all, 62.3% of the sample was prescribed a central nervous system medication, with 47.4% taking more than one. Of those who were medicated, 46.5% had a neurological diagnosis (a seizure disorder or Parkinson's disease) and 45.1% had a psychiatric diagnosis (an affective or psychotic disorder). Linear regression revealed that polypharmacy was predicted by the presence of neurological and psychiatric diagnosis, higher Developmental Behaviour Checklist for Adults scores and male gender. This study is the first to focus on central nervous system medication in an older sample with intellectual disability. The findings are in line with the wider literature in younger people, showing a high degree of prescription and polypharmacy. Within the sample, there seems to be adequate rationale for central nervous system medication prescription. Although these data do not indicate non-adherence to

  7. Healthy Lifestyles for Adults with Intellectual Disability: Knowledge, Barriers, and Facilitators

    Science.gov (United States)

    Caton, Sue; Chadwick, Darren; Chapman, Melanie; Turnbull, Sue; Mitchell, Duncan; Stansfield, Jois

    2012-01-01

    Background: People with intellectual disability (ID) are more likely to have health problems than people without disability. Little previous research has investigated health from the perspective of the people with ID themselves. We aimed to focus on what people with ID understand being healthy to mean and what their experiences are of healthy…

  8. Assumptions of Decision-Making Capacity: The Role Supporter Attitudes Play in the Realisation of Article 12 for People with Severe or Profound Intellectual Disability

    OpenAIRE

    Joanne Watson

    2016-01-01

    The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures...

  9. The practical implication of comparing how adults with and without intellectual disability respond to music

    DEFF Research Database (Denmark)

    Hooper, Jeff; Wigram, Tony; Carson, Derek

    2011-01-01

    Previous researchers who compared how people with, and without, an intellectual disability respond to music focused on musical aptitude, but not on arousal. This paper presents the background, methodology, and results of a study that selected fifteen different pieces of music, and compared...... the arousal response of adults with (n = 48), and without (n = 48), an intellectual disability. There was a very strong significant positive correlation (rho = 0.831, N = 15, P ... an intellectual disability, can be used appropriately in an intervention predicated for lowering the arousal levels of the intellectually disabled population....

  10. Disability impact and coping in mothers of children with intellectual disabilities and multiple disabilities.

    Science.gov (United States)

    Kishore, M Thomas

    2011-12-01

    Understanding the disability impact on parenting and caregiving is important for intervention. The present study was designed to understand the differences in perceived disability impact and related coping in mothers having children with intellectual disabilities alone compared to those having children with intellectual disabilities and additional disabilities. Accordingly, 30 mothers of children with intellectual disabilities and 30 mothers of children with intellectual and additional disabilities were assessed for disability impact and coping. Group differences for disability impact were present in specific domains but not overall. Despite variations in coping pattern, both positive and negative coping strategies were observed in both groups. The results may imply that the impact of intellectual disability is so pervasive that except in certain domains mothers may not perceive the further impact of additional disabilities. Positive coping does not rule out negative coping strategies. These findings have specific relevance to service delivery in a cultural context.

  11. Resilience and professional quality of life in staff working with people with intellectual disabilities and offending behavior in community based and institutional settings

    Directory of Open Access Journals (Sweden)

    Erik Søndenaa

    2013-01-01

    Full Text Available Staff in forensic services for people with intellectual disabilities (ID are expected to deal with a wide range of emotional challenges when providing care. The potential impact of this demanding work has not been systematically explored previously. This article explores the professional quality of life (QoL and the resilience (hardiness of the staff in this setting. The Professional QoL questionnaire and the Disposional Resilience Scale were completed by staff (n=85, 80% response rate in the Norwegian forensic service for ID offenders. Responses from staff working in institutional settings were compared to those from staff in local community services. Staff in the local community services had higher resilience scores compared to the staff in the institutional setting, (t=2.19; P<0.05. However in the other QoL and resilience domains there were no differences between the staff in the two settings. The greater sense of resilient control among community staff may be a function of both the number of service users they work with and the institutional demands they face. Even though these participants worked with relatively high risk clients, they did not report significantly impaired quality of life compared to other occupations.

  12. The importance of person-centred care and co-creation of care for the well-being and job satisfaction of professionals working with people with intellectual disabilities

    OpenAIRE

    Meer, Leontine; Nieboer, Anna; Finkenflügel, Harry; Cramm, Jane

    2018-01-01

    textabstractBackground: Person-centred care and co-creation of care (productive interactions between clients and professionals) are expected to lead to better outcomes for clients. Professionals play a prominent role in the care of people with intellectual disabilities at residential care facilities. Thus, person-centred care and co-creation of care may be argued to lead to better outcomes for professionals as well. This study aimed to identify relationships of person-centred care and co-crea...

  13. Thematic Analysis of the Effectiveness of an Inpatient Mindfulness Group for Adults with Intellectual Disabilities

    Science.gov (United States)

    Yildiran, Hatice; Holt, Rachel R.

    2015-01-01

    The study focused on the effectiveness of group mindfulness for people with intellectual disabilities in an assessment and treatment unit. Six participants with mild or moderate intellectual disabilities were interviewed using semi-structured interviews. The interviews focused on identifying the benefits and difficulties of using mindfulness. The…

  14. Carer Knowledge and Perceptions of Healthy Lifestyles for Adults with Intellectual Disabilities

    Science.gov (United States)

    Melville, Craig A.; Hamilton, Sarah; Miller, Susan; Boyle, Susan; Robinson, Nicola; Pert, Carol; Hankey, Catherine R.

    2009-01-01

    Background: Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers' training needs on diet and physical activity. Methods: A cross-sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities.…

  15. Exogenous Melatonin for Sleep Problems in Individuals with Intellectual Disability: A Meta-Analysis

    Science.gov (United States)

    Braam, Wiebe; Smits, Marcel G.; Didden, Robert; Korzilius, Hubert; van Geijlswijk, Ingeborg M.; Curfs, Leopold M. G.

    2009-01-01

    Recent meta-analyses on melatonin has raised doubts as to whether melatonin is effective in treating sleep problems in people without intellectual disabilities. This is in contrast to results of several trials on melatonin in treating sleep problems in individuals with intellectual disabilities. To investigate the efficacy of melatonin in treating…

  16. Staff Stress and Burnout in Intellectual Disability Services: Work Stress Theory and Its Application

    Science.gov (United States)

    Devereux, Jason; Hastings, Richard; Noone, Steve

    2009-01-01

    Background: Staff in intellectual disability services can be at risk of stress and burnout at work. Given that staff well-being has implications for the quality of life of the staff themselves and people with intellectual disabilities themselves, this is an important research and practical topic. In this paper, we review work stress theories that…

  17. Social Interaction with Adults with Severe Intellectual Disability: Having Fun and Hanging Out

    Science.gov (United States)

    Johnson, Hilary; Douglas, Jacinta; Bigby, Christine; Iacono, Teresa

    2012-01-01

    Background: Social interaction is integral to social inclusion. Little is known about the nature of social interaction between adults with severe intellectual disability and those with whom they engage. Method: Participants were six adults with intellectual disability and people identified as those with whom they shared demonstrable pleasurable…

  18. Staffs' Knowledge and Perceptions of Working with Women with Intellectual Disabilities and Mental Health Problems

    Science.gov (United States)

    Taggart, L.; McMillan, R.; Lawson, A.

    2010-01-01

    Aim: There is a growing evidence of the physical and mental health inequalities in people with intellectual disability (ID) although less has been written concerning the mental health of women with ID (International Association for the Scientific Study of Intellectual Disabilities). This is compared with the substantive literature published within…

  19. Comparative Policy Brief: Status of Intellectual Disabilities in the Republic of Haiti

    Science.gov (United States)

    Jacobson, Erik

    2008-01-01

    An estimated 800,000 persons have disabilities in Haiti, but there are no data that refer specifically to those with intellectual disabilities. Traditional fears and stigma about disability are widespread. While the constitution supports the idea that people with disabilities should have autonomy and education, there are no laws to mandate…

  20. Fostering Emotion Expression and Affective Involvement with Communication Partners in People with Congenital Deafblindness and Intellectual Disabilities

    Science.gov (United States)

    Martens, Marga A. W.; Janssen, Marleen J.; Ruijssenaars, Wied A. J. J. M.; Huisman, Mark; Riksen-Walraven, J. Marianne

    2017-01-01

    Background: Recent studies have shown that it is possible to foster affective involvement between people with congenital deafblindness and their communication partners. Affective involvement is crucial for well-being, and it is important to know whether it can also be fostered with people who have congenital deafblindness and intellectual…

  1. Knowledge about the joy in children with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Jasielska Aleksandra

    2017-06-01

    Full Text Available The aim of this study was to characterize the knowledge about the joy in children with mild intellectual disability. The premises relating to mental functioning of these children suggest that this knowledge is poorer and less complex than the knowledge of their peers in the intellectual norm. The study used the authoring tool to measure children’s knowledge of emotions including the joy. This tool takes into account the cognitive representation of the basic emotions available in three codes: image, verbal, semantic and interconnection between the codes - perception, symbolization and conceptualization which perform the functions of perception, expression and understanding. The study included children with the intellectual norm (N = 30 and children with mild intellectual disability (N = 30. The obtained results mainly indicate the differences in how the happiness is understood by particular groups, to the detriment of children with disability. The character of the results is largely determined by the level of organization of knowledge about the joy and accompanying mental operations. The results will be discussed, among others, in the context of the adjustment of the programs of lasting increase of happiness for people with intellectual disability.

  2. Intellectual disability, consumerism and identity: to have and have not?

    Science.gov (United States)

    McClimens, Alex; Hyde, Martin

    2012-06-01

    Here we consider the consumer society as it currently exists in the UK and examine its relationship and relevance to the population of individuals with intellectual disability. We do this through a reading of the associated literature on theories of shopping and consumption which we then contrast with research evidence as it applies to the lives of people with intellectual disability. By brining together these two perspectives we hope to shine some light on ideas around identity and choice. We then transfer these arguments to the health and social care sector. Here we ask whether an economic model which has been exposed as divisive and exclusionary should be used in the administration of social secutity benefits of the kind accesed by people with a range of disabilities. We conclude that the unchallenged advance of marketisation within health and social care may benefit those who are financially able but for those who are economically disadvantaged the choices offered are illusory at best.

  3. Dr. Tulp attends the soft machine: patient simulators, user involvement and intellectual disability.

    Science.gov (United States)

    McClimens, Alex; Lewis, Robin; Brewster, Jacqui

    2012-09-01

    Simulation as a way to teach clinical skills attracts much critical attention. Its benefits, however, might be significantly reduced when the simulation model used relies exclusively on patient simulators. This is particularly true if the intended patient population for students taught is characterized by intellectual disability. Learning to care for people with intellectual disability might be better supplemented when the simulation model used incorporates input from 'real' people. If these people themselves have intellectual disabilities then the verisimilitude of the simulation will be higher and the outcomes for learners and potential patients will also be improved.

  4. 'It's our everyday life' - The perspectives of persons with intellectual disabilities in Norway.

    Science.gov (United States)

    Witsø, Aud Elisabeth; Hauger, Brit

    2018-01-01

    This study illuminates how adults with intellectual disabilities understand and describe their everyday life and its shortcomings when it comes to equal rights in the context of Norwegian community living. An inclusive research design, including nine persons with mild intellectual disability, two university researchers and two intellectual disability nurses from the municipality, was undertaken. An inductive thematic analysis of data identified three key themes: everyday life - context, rhythm and structure, social participation and staff - an ambiguous part of everyday life. Results show that service provision had institutional qualities; participants experienced lack of information and reduced possibilities for social inclusion and community participation like everyone else. More attention on the role of policy development, support staff and leadership, in relation to facilitating an everyday life with more user involvement, social inclusion and community participation of people needing support, is essential. Participatory, appreciative, action and reflection in workshops for persons with intellectual disabilities and support staff represent a promising approach to promote the voices and interests of persons with intellectual disabilities. Accessible abstract This article tells you about the everyday life of people with intellectual disabilities living in Norway. Nine people with intellectual disabilities worked together with two university researchers and two intellectual disability nurses in the community, in workshops. The people with intellectual disabilities liked to have their own apartment and going to work every day. They said that they wanted more social participation with friends and more participation in activities in the community, just like everyone else. They wanted to be treated with more respect by their staff. All participants in the project saw great value in working together and some of them are working together in a new project about

  5. Intellectual Disability in Children; a Systematic Review

    Directory of Open Access Journals (Sweden)

    Dasteh Goli N.*BSc

    2016-03-01

    Full Text Available Abstract Aims: Intellectual disability is a condition characterised by the inability of a person to undertake normal psychological activities. The purpose of this study was to systematically review the intellectual disability in children and discuss the implications of different environmental and genetic factors, which describe particular categories of intellectual disable cases. Information & Methods: This systematic review was performed in 2014 by searching the existing literature in PubMed database in the scope of “intellectual disability in children”. 38 articles written from 1987 to 2014 were selected and surveyed for review. Findings: The prevalence of ID in the general population is estimated to be approximately 1%. ID disorder is multi-causal, encompassing all factors that interfere with brain development and functioning. Causes usually are classified according to the time of the insult, as prenatal, perinatal, and postnatal or acquired. Some causes, such as environmental toxins or endocrine disorders, may act at multiple times. Others, such as genetic disorders, have different manifestations during postnatal development. The outcome for ID is variable and depends upon the aetiology, associated conditions, and environmental and social factors. The goals of management of ID are to strengthen areas of reduced function, minimize extensive deterioration in mental cognitive and adaptability, and lastly, to promote optimum or normal functioning of the individuals in their community. Conclusion: Prominent features of ID include significant failures in both intellectual functioning and adaptive behaviour, which comprises daily social and practical life skills, commencing earlier in life.

  6. The Interrater Reliability of the Modified Gait Abnormality Rating Scale for Use with People with Intellectual Disability

    Science.gov (United States)

    Hale, Leigh; McIlraith, Lucy; Miller, Clare; Stanley-Clarke, Terri; George, Rebecca

    2010-01-01

    Background: Researching falls in persons with ID is limited by difficulties in applying standardised balance outcome measures. The modified Gait Abnormality Rating Scale (GARS-M), developed to identify falls risk in older adults, requires only that the participant walks and thus may be a feasible falls research tool to use with people with ID. In…

  7. Exploring academics' views on designs, methods, characteristics and outcomes of inclusive health research with people with intellectual disabilities: a modified Delphi study.

    Science.gov (United States)

    Frankena, T K; Naaldenberg, J; Cardol, M; Meijering, J V; Leusink, G; van Schrojenstein Lantman-de Valk, H M J

    2016-08-18

    The British Medical Journal's (BMJ's) patient revolution strives for collaboration with patients in healthcare and health research. This paper studies collaboration with people with intellectual disabilities (ID) in health research, also known as inclusive health research. Currently, transparency and agreement among academics is lacking regarding its main aspects, preventing upscaling of the patient revolution. This study aims to gain agreement among academics on 3 aspects of inclusive health research for people with ID: (1) designs and methods, (2) most important characteristics and (3) outcomes. A Delphi study was conducted with academics with experience in inclusive (health) research and on people with ID. The study consisted of 2 sequential questionnaire rounds (n=24; n=17), followed by in-depth interviews (n=10). Academics agreed on (1) a collaborative approach to be most suitable to inclusive health research, (2) characteristics regarding the accessibility and facilitation of inclusive health research, and (3) several outcomes of inclusive health research for people with ID and healthcare. Other characteristics agreed on included: atmosphere, relationship, engagement, partnership and power. It was stressed that these characteristics ensure meaningful inclusion. Interviewed academics voiced the need for a tool supporting the facilitation and evaluation of inclusive health research. There was ambiguity as to what this tool should comprise and the extent to which it was possible to capture the complex process of inclusive health research. This study underlines the need for transparency, facilitation and evaluation of inclusive health research. The need for in-depth interviews after 2 Delphi rounds underlines its complexity and context dependence. To increase process transparency, future research should focus on gaining insight into inclusive health research in its context. A tool could be developed to facilitate and evaluate inclusive health research. This tool

  8. Identifying classes of persons with mild intellectual disability or borderline intellectual functioning: a latent class analysis.

    Science.gov (United States)

    Nouwens, Peter J G; Lucas, Rosanne; Smulders, Nienke B M; Embregts, Petri J C M; van Nieuwenhuizen, Chijs

    2017-07-17

    Persons with mild intellectual disability or borderline intellectual functioning are often studied as a single group with similar characteristics. However, there are indications that differences exist within this population. Therefore, the aim of this study was to identify classes of persons with mild intellectual disability or borderline intellectual functioning and to examine whether these classes are related to individual and/or environmental characteristics. Latent class analysis was performed using file data of 250 eligible participants with a mean age of 26.1 (SD 13.8, range 3-70) years. Five distinct classes of persons with mild intellectual disability or borderline intellectual functioning were found. These classes significantly differed in individual and environmental characteristics. For example, persons with a mild intellectual disability experienced fewer problems than those with borderline intellectual disability. The identification of five classes implies that a differentiated approach is required towards persons with mild intellectual disability or borderline intellectual functioning.

  9. Eye movement desensitization and reprocessing in an adolescent with epilepsy and mild intellectual disability.

    Science.gov (United States)

    Rodenburg, Roos; Benjamin, Anja; Meijer, Anne Marie; Jongeneel, Ruud

    2009-09-01

    Intellectual disability is a comorbid condition in epilepsy. People with epilepsy and intellectual disability are at high risk of developing behavioral problems. Among the many contributors to behavioral problems in people with epilepsy and intellectual disability are those of traumatic experiences. As such, behavioral problems can be seen as a reflection of these traumatic experiences. Among established trauma therapies, eye movement desensitization and reprocessing (EMDR) is an emerging treatment that is effective in adults and also seems to be effective in children. This article is a case report of EMDR in an adolescent with epilepsy and mild intellectual disability, in whom the EMDR children's protocol was used. The aim was to assess whether clinical trauma status significantly diminished to nonclinical status posttreatment. Change in trauma symptoms was evaluated with the Reliable Change Index (RCI). Results showed a significant decrease in trauma symptoms toward nonclinical status from pretreatment to posttreatment. EMDR consequences for epilepsy and intellectual disability are discussed.

  10. Extrinsic high-effort and low-reward conditions at work among institutional staff caring for people with intellectual disabilities in Taiwan.

    Science.gov (United States)

    Lee, Tzong-Nan; Lin, Jin-Ding; Yen, Chia-Feng; Loh, Ching-Hui; Hsu, Shang-Wei; Tang, Chi-Chieh; Wu, Jia-Ling; Fang, Wen-Hui; Chu, Cordia M

    2009-01-01

    The purposes of the present study were to determine whether extrinsic high-effort/low-reward conditions at work are associated with personal characteristics and the organizational environments. A cross-sectional survey was conducted (76.7% response rate, N=1243) by recruiting the staff caring for people with intellectual disabilities of Taiwan in 2006. Conditions at work were measured using Siegrist's Effort-Reward Imbalance (ERI) model, the questionnaire included 23 Likert scaled items and it divided into three scales: effort, reward and overcommitment. Multiple logistic regression modeling was conducted for extrinsic high-effort/low-reward status in relation to staff and working environmental factors. We found that 15.1% staff were in the low-effort/low-reward group, 35.9% was in the low-effort/high-reward group, 17.9% belonged to the high-effort/high-reward group and 31.1% was included in the high-effort/low-reward group. Controlling for many personal demographic and organizational characteristics, the factors of perceived job support (OR=0.91; 95% CI=0854-0.97), job control (OR=0.954, 95% CI=0.934-0.974), job demand (OR=1.155, 95% CI=1.109-1.203) and job stress (felt sometimes stressful compare to no stress at all, OR=2.305, 95% CI=1.161-4.575) of the staff were significantly correlated to the extrinsic high effort/low reward at work in the multiple logistic regression model. The present study highlights that the service providers need to be aware and understand the experiences that their staff encounters in the organizational, interpersonal and personal level regarding unfair working conditions such as high effort/low reward to improve the positive health of the staff.

  11. Intellectual disability sport and Paralympic classification

    OpenAIRE

    Anna van Dijk; Klára Daďová; Irena Martínková

    2017-01-01

    Sometimes it might seem that elite disability sport, especially as represented by the Paralympic Movement, is only for athletes with an amputation, or a spinal cord injury, or cerebral palsied or blind athletes, rather than for athletes with an intellectual disability (ID). However, after we set out the various opportunities open to ID athletes, that offer different kinds of sporting engagement, we find interesting and alarming issues with respect to the elite competitive event offer for athl...

  12. Should we provide oral health training for staff caring for people with intellectual disabilities in community based residential care? A cost-effectiveness analysis.

    Science.gov (United States)

    Mac Giolla Phadraig, Caoimhin; Nunn, June; Guerin, Suzanne; Normand, Charles

    2016-04-01

    Oral health training is often introduced into community-based residential settings to improve the oral health of people with intellectual disabilities (ID). There is a lack of appropriate evaluation of such programs, leading to difficulty in deciding how best to allocate scarce resources to achieve maximum effect. This article reports an economic analysis of one such oral health program, undertaken as part of a cluster randomized controlled trial. Firstly, we report a cost-effectiveness analysis of training care-staff compared to no training, using incremental cost-effectiveness ratios (ICERs). Effectiveness was measured as change in knowledge, reported behaviors, attitude and self-efficacy, using validated scales (K&BAS). Secondly, we costed training as it was scaled up to include all staff within the service provider in question. Data were collected in Dublin, Ireland in 2009. It cost between €7000 and €10,000 more to achieve modest improvement in K&BAS scores among a subsample of 162 care-staff, in comparison to doing nothing. Considering scaled up first round training, it cost between €58,000 and €64,000 to train the whole population of staff, from a combined dental and disability service perspective. Less than €15,000-€20,000 of this was additional to the cost of doing nothing (incremental cost). From a dental perspective, a further, second training cycle including all staff would cost between €561 and €3484 (capital costs) and €5815 (operating costs) on a two yearly basis. This study indicates that the program was a cost-effective means of improving self-reported measures and possibly oral health, relative to doing nothing. This was mainly due to low cost, rather than the large effect. In this instance, the use of cost effectiveness analysis has produced evidence, which may be more useful to decision makers than that arising from traditional methods of evaluation. There is a need for CEAs of effective interventions to allow comparison

  13. Intellectual disability and patient activation after release from prison: a prospective cohort study.

    Science.gov (United States)

    Young, J T; Cumming, C; van Dooren, K; Lennox, N G; Alati, R; Spittal, M J; Brophy, L; Preen, D B; Kinner, S A

    2017-10-01

    Intellectual disability and patient activation may be important drivers of inequities in health service access and health outcomes for people with intellectual disability transitioning from prison to the community. We assessed the association between intellectual disability and patient activation after prison release and examined whether this association varied, depending on whether intellectual disability was identified prior to prison release. Overall, 936 prisoners were screened for intellectual disability by using the Hayes Ability Screening Index and completed the Patient Activation Measure (PAM) within 6 weeks of prison release and again at 1, 3 and 6 months post-release. We estimated the association between intellectual disability status and PAM scores by using a multilevel linear model, adjusting for sociodemographic, behavioural, health and criminogenic factors. We used propensity score matching to estimate the impact of being identified with intellectual disability prior to release from prison on the change in mean PAM score after prison release. Compared with those who screened negative for intellectual disability, ex-prisoners who screened positive, both with and without prior identification of intellectual disability, had significantly decreased mean PAM scores [(B = -4.3; 95% CI: -6.3, -2.4) and (B = -4.5; 95% CI: -6.8, -2.3), respectively] over 6 months of follow-up. Among those who reported being identified with intellectual disability prior to release from prison, a significant increase in PAM score at the 6-month follow-up interview (B = 5.89; 95% CI: 2.35, 9.42; P = 0.001) was attributable to being identified with intellectual disability prior to release. Ex-prisoners screening positive for possible intellectual disability have decreased patient activation for at least 6 months after release from prison. However, individuals whose possible intellectual disability is unidentified appear to be particularly vulnerable. Incarceration is a

  14. Best Practices in Intellectual Disability Identification

    Science.gov (United States)

    Fiorello, Catherine A.; Jenkins, Tiffany K.

    2018-01-01

    This article is an overview of identification of intellectual disabilities (ID), with a focus on meeting legal and ethical requirements when assessing children from culturally and linguistically diverse backgrounds and those living in poverty. Specific procedures and recommended instruments will be reviewed.

  15. Life Satisfaction in Persons with Intellectual Disabilities

    Science.gov (United States)

    Lucas-Carrasco, Ramona; Salvador-Carulla, Luis

    2012-01-01

    We appraised life satisfaction using the Satisfaction with Life Scale (SWLS), and analysed its psychometric properties in persons with intellectual disability (ID). Ninety-nine persons with ID from four services in Spain participated. A battery of subjective assessments was used, including the SWLS, a Quality of Life measure (WHOQOL-BREF), and…

  16. Aging in Rare Intellectual Disability Syndromes

    Science.gov (United States)

    Dykens, Elisabeth M.

    2013-01-01

    This review highlights several methodological challenges involved in research on aging, health, and mortality in adults with rare intellectual disability syndromes. Few studies have been performed in this area, with research obstacles that include: the ascertainment of older adults with genetic versus clinical diagnoses; likelihood that adults…

  17. Perceptions of the Judiciary and Intellectual Disability.

    Science.gov (United States)

    Cockram, Judith; And Others

    1993-01-01

    Seventeen Supreme Court Judges, District Court Judges, and Magistrates in Western Australia were surveyed to examine perceptions concerning overrepresentation of individuals with intellectual disability in the criminal justice system. The judiciary felt these individuals had several characteristics that would disadvantage them in contacts with the…

  18. An inexorable rise in intellectual disability?

    NARCIS (Netherlands)

    Michiel Ras; Isolde Woittiez; Hetty van Kempen; Klarita Sadiraj

    2010-01-01

    Original title: Steeds meer verstandelijk gehandicapten? Demand for intellectual disability care has grown strongly in the Netherlands in recent years. Partly at the request of the Dutch Ministry of Health, Welfare and Sport, the Netherlands Institute for Social Research/SCP measured the

  19. The importance of person-centred care and co-creation of care for the well-being and job satisfaction of professionals working with people with intellectual disabilities.

    Science.gov (United States)

    van der Meer, Leontine; Nieboer, Anna Petra; Finkenflügel, Harry; Cramm, Jane Murray

    2018-03-01

    Person-centred care and co-creation of care (productive interactions between clients and professionals) are expected to lead to better outcomes for clients. Professionals play a prominent role in the care of people with intellectual disabilities at residential care facilities. Thus, person-centred care and co-creation of care may be argued to lead to better outcomes for professionals as well. This study aimed to identify relationships of person-centred care and co-creation of care with the well-being and job satisfaction of professionals working with people with intellectual disabilities (PWID). A cross-sectional survey was conducted in 2015 among professionals working at a disability care organisation in the Netherlands. All 1146 professionals involved in the care of people with intellectual disabilities who required 24-hours care were invited to participate. The response rate was 41% (n = 466). Most respondents (87%) were female, and the mean age was 42.8 ± 11.5 years (22-65). The majority of respondents (70%) worked ≥22 hours per week and had worked for the organisation for ≥5 years (88%). Most of the respondents (76.8%) were direct care workers either in residential homes (59.3%) or in day activities (17.5%). After controlling for background variables, person-centred care and co-creation of care were associated positively with job satisfaction and well-being of professionals. The provision of person-centred care and co-creation of care may lead to better well-being and job satisfaction among professionals working with PWID. This finding is important, as such professionals often experience significant levels of work stress and burnout. © 2017 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.

  20. Feasibility of bioelectrical impedance analysis in persons with severe intellectual and visual disabilities

    NARCIS (Netherlands)

    Havinga-Top, Thamar; Waninge, Aly; van der Schans, Cees; Jager, Harriët

    2015-01-01

    Background: Body composition measurements provide importanti nformation about physical fitness and nutritional status. People with severe intellectual and visual disabilities (SIVD) have an increased risk for altered body composition. Bioelectrical impedance analysis (BIA) has been evidenced as a