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Background: As the life expectancy of people with intellectual disability increases, they may now outlive their parents or their parents' ability to continue to care. Siblings of adults with intellectual disability often succeed their parents as primary carers. Little is known about the health and well‐being of this important cohort of carers who will be both caring for and ageing alongside their brother or sister with intellectual disability. The Carer's Study within The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS‐TILDA) provides a unique insight into the health and well‐being of family carers of older adults with intellectual disability including sibling carers in Ireland. This article reports on the findings from waves 1, 2, 3 and 4 of the IDS‐TILDA Carer's Study. Methods: The IDS‐TILDA Carer's Study surveys family carers of older people (aged 40 years and older) with intellectual disability on a 3‐yearly cycle. The family carers complete a self‐administered, mixed‐methods questionnaire. The qualitative data are analysed thematically, and a descriptive analysis of the quantitative data is conducted using SPSS. Findings: In each wave, sibling carers comprised a significant proportion of the Carer's Study participants: W1 58%; W2: 61.4%; W3: 76.7%; and W4: 45.8%. The siblings were predominantly female, not in paid employment and were caring without the support of a spouse or partner. Across the four waves, siblings reported good general health. However, a high prevalence of particular conditions including back pain, aching joints and stress was also reported, and in each wave, siblings reported feeling completely overwhelmed by their care responsibilities. Although sibling carers reported that they have considered the future, only a minority have progressed to action in this regard. Conclusions: There is evidence of the strong relational and emotional commitment by the siblings to their brother or sister with intellectual disability. However, through the four waves of data, there was also evidence of physical, mental and financial toll. An urgent need exists to identify and engage with siblings to protect their well‐being as they provide care for an increasingly ageing sibling. Accessible Summaries: When the parents of people with intellectual die or can no longer provide care and support, brothers and/or sisters may take over the role.Little is known about the lives of these brothers and sisters and whether they need support.Our study asks brothers and sisters about their lives, their health and the good and more difficult things about being a carer.This paper reports on the results of four surveys over 9 years.Most brothers and sisters felt that their health was good but because many reported health problems, more support should be available to brothers and sisters who are carers. [ABSTRACT FROM AUTHOR]

Accessible Summary: After they leave school, lots of young people with disabilities do not enjoy the good things in life such as going to college, having a paid job and meeting friends.Social role valorisation (SRV) theory says that in order to enjoy the good things in life, people need to have valued social roles.This project used SRV theory to help to plan for a good life for a 17‐year‐old student with a learning disability during her final year in school.As a result of the individualised supports she received, which were guided by SRV theory, Rutchelle gained many valued social roles including employee, commuter, gym member, girlfriend, consumer and adult. However, she still did not have as many relationships or as good a social life as other 18‐year‐olds. Most importantly, she did not have many choices about what she could do when she left school.The research shows that SRV theory is useful in transition planning, but that other theories such as inclusion and the social model of disability are very important if people with disabilities are to enjoy the good things in life. Background: Research suggests that, in spite of legislation, the process of transition from school is problematic for most young people with disabilities. Best practices in transition emphasise the importance of providing personalised transition supports. This study, which took place in Ireland, aimed to explore the application of social role valorisation (SRV) theory to the transition process for one school leaver with a moderate Intellectual Disability. Materials and Methods: A single case research design was used. Data was collected over a period of nine months through interviews, observations and document analysis. Thematic analysis based on SRV principles and themes was conducted to analyse the data. Results: This research found that, while the participant experienced many of 'the good things of life' by the end of the project, she had fewer relationships and a more limited social life than would be typical for an 18 year old. In addition, she was restricted in her post‐school choices in spite of her enhanced image, competencies and valued social roles. Conclusions: This study suggests that, while SRV theory is useful in guiding the transition process, it may need to be adapted in order to reconcile with more contemporary movements in the field of disability, such as the Social Model of Disability and Inclusion, if it is to become a guiding theory in the delivery of personalised supports during the period of transition from school to adult life. [ABSTRACT FROM AUTHOR]

Accessible summary: Professionals are reluctant to discuss sensitive information with people with intellectual disabilities.People with intellectual disabilities and families wish to engage in end‐of‐life discussions.People with intellectual disabilities expressed how they could handle bad news and they felt that this information could be used to help make choices.People with intellectual disabilities and families want to develop a plan based on their choices and wishes and there is a need to respect this at the end of life. Background: Recently, more and more people with intellectual disabilities have been dying from life‐limiting conditions, and on many occasions, people with intellectual disabilities have not been informed of this. There is limited evidence concerning the views and opinions of this cohort regarding the information that is needed in order for decision‐making to occur at the end of life. Therefore, this study aimed to explore the perceptions of people with intellectual disabilities and families in terms of the information that is needed as part of end‐of‐life decision‐making. Materials and Methods: A qualitative approach was employed to explore the information needed by, and the decision‐making ability of, people with intellectual disabilities at the end‐of‐life phase. One‐to‐one interviews were carried out with nineteen people following the obtaining of ethical approval. The constant comparative method was used to analyse the data. Results: It was found that people with intellectual disabilities were comfortable with, and wished to know about, what was happening in their lives, including the existence of life‐limiting conditions, so that they would be able to create a good plan for their future care. It was also expressed how it was essential to create a plan of care that allowed professionals to provide excellent care and use of which prevented the occurrence of any ambiguity. Conclusions: The study found that people with intellectual disabilities, especially those with mild and moderate, are able to handle complex and sensitive information and make decisions for themselves regarding their care when adequate support is in place. [ABSTRACT FROM AUTHOR]

Accessible Summary: We talked to 14 people about what it is like to do inclusive research in the Republic of Ireland.People said that more time is needed to do inclusive research well. They also told us about how hard it can be for all members of the research team to be equally involved in all research stages.Learning to speak up for themselves was something people with learning disabilities said they liked about being an inclusive researcher.Inclusive research teams need to write more about how they work on projects together, to give others ideas about how to do good research that matters to people with learning disabilities. Background: The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) (United Nations,) sets the expectation that people with disabilities be involved in research that affects their lives. Inclusive research moves people with intellectual disabilities away from being research subjects, towards power‐balanced research collaborations that can create individual and societal change. Method: This study employed a qualitative methodology guided by critical disability theory. Participants included seven adults with intellectual disability, two supporters and five academics who all had experience of inclusive research. Semistructured individual interviews (n = 9) and one focus group (n = 5) were carried out to explore experiences of engaging in inclusive research in the Republic of Ireland. Results: Thematic analysis using Atlas.ti software yielded three themes: "Continuum of inclusive research," "Value of inclusive research" and "Power relations within inclusive research." Definitions of inclusive research occurred along a continuum from participatory to emancipatory. Advocating for policy change and personal growth motivated participants to become inclusive researchers. The power dynamics negotiated by teams functioning within academic environments were highlighted, yet despite this, inclusive research teams are creating a space where people with intellectual disabilities are becoming confident researchers and peer mentors. Conclusions: This study illuminated experiences of engaging in inclusive research in an Irish context. Retaining a responsive, local approach to inclusive research is advised. Being part of inclusive research teams was both personally rewarding and financially complex. Inclusive research is at a critical moment in Ireland, poised to effect positive change in policy and service provision. Critically reviewing and documenting how inclusive research teams negotiate these complex dynamics is warranted. [ABSTRACT FROM AUTHOR]

Accessible summary This article is about women with intellectual disability who have children., The article tells the stories of four women with intellectual disabilities in Ireland who have children. It also explains how hard it was at times for them to work with Child and Family Services., Many mothers with intellectual disabilities want to keep their babies., Women with intellectual disabilities who are mothers should be provided with proper support to help them care for their children., Summary Traditionally, women with intellectual disabilities have faced challenges in accessing effective public health services and social service provision during pregnancy and early motherhood. The authors report on the experiences of four women with intellectual disabilities in their interactions with childcare services in the Republic of Ireland. They discuss the women's feelings of isolation, fears of losing their children and the disempowering effects of inadequate, ubiquitous responses adopted by many professionals and services. This study recommends a person-centred, rights-based approach to meeting the needs of these women. [ABSTRACT FROM AUTHOR]

Accessible summary This research indentifies the types of technology children with complex needs use at home., Many types of equipment were identified., Parents need support in using this equipment., Summary Within the literature, there is evidence that caring for children with complex needs, however defined, includes the management of equipment and resources (Child Care Health Dev , 2001, 27, 321; Technology Dependent Children and Family Life. Research Works, University of York, UK, Social Policy Research Unit, 2003; Journal of Specialists in Pediatric Nursing, 2007, 12, 72; Caring for Children with Complex Needs in the Community, Oxford, Blackwell Publishing, 2008). The objectives of this mixed method study were to identify the range of technology used by children with complex needs and identify issues of concern for parents. Data were collected using a specifically designed questionnaire that was developed with experts. The questionnaire was subsequently administered by telephone survey and personal contact with parents of children with complex needs. Findings indicated that children with intellectual disabilities* and associated complex needs require the use of high levels of technology** to maintain their health and well-being. On average, families identified that 22 pieces of equipment were used by their child. This study is significant in identifying technology used in the home for the care of children with intellectual disabilities and associated complex needs. Associated issues concerning the use and management of this technology have been highlighted. Areas in need of development include provision of supporting mechanisms for parents to meet the daily requirements of their child in the home. [ABSTRACT FROM AUTHOR]