BackgroundEmpirical 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.MethodsA 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.ResultsA 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.ConclusionsThe 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 incorporated in policy and programmes; and to translate them into actual research studies by setting up European collaborations for specific studies that require such collaboration, develop research proposals and attract research funding.

No abstract

Background:As people live longer, they are more likely to die over a prolonged period from incurable, chronic illnesses that occur more frequently in old age. Therefore, people will experience an increase in end-of-life discussions and decisions.Aim:The aim of this study was to explore the prevalence and nature of end-of-life decisions for people with disabilities in Swiss residential homes.Design:A cross-sectional survey in the three biggest German-speaking regions in Switzerland (N = 209) was conducted.Setting:All of the residential homes for adults with disabilities (N = 209) were invited to participate in a cross-sectional survey. The response quote was 76.7%. Directors provided information on 82 deaths. Chi-square and t-tests were used to study differences in prevalence and nature of end-of-life decisions between people with intellectual disability (ID) and people with other disabilities.Results:An end-of-life decision was taken in 53.7% of the cases (n = 44). For people with ID, the decision to withhold treatment had been taken more often (28.9%, 13 cases) than for people with other disabilities (8.1%, 3 cases) (χ2 (1, N = 82) = 5.58, p = 0.017).Conclusion:The study provides insight in end-of-life decision-making for people with disabilities in Switzerland. The results have implications on surrogate decision-making for people with ID living in residential homes. As the study partly confirms the results of previous studies, further studies will be necessary.

A large number of adults with and without disabilities engage in volunteering activities, allowing them to meet new people, providing them with the opportunity to learn new skills, to build their confidence, and to contribute to society. However, in previous studies of volunteers with intellectual disabilities (ID), it has been shown that this group is rarely involved in volunteering. This study explores the challenges, opportunities, and support needs of such volunteers and develops a heuristic model to support volunteering by people with ID in Switzerland. Semistructured interviews were conducted with a convenience sample of six volunteers with ID. The analysis was based on reflexive grounded theory. Volunteering is one way in which people with ID can participate in society and receive recognition for their engagement. Basic needs, personal motivation, and social recognition are central for volunteers with ID. A heuristic model to support volunteering based on personal and social reasons of individuals with ID is developed. By receiving the appropriate support, people with ID can thus contribute by volunteering on the same terms as volunteers without disabilities. The present findings shed some light on ways to increase the rate of volunteering by people with ID. While the present model can help to identify the type of support appropriate for people with disabilities, future research should aim to verify the outcomes of this study in a larger sample.

No abstract