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.

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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.

ZusammenfassungDie Frage nach der Einwilligungsfähigkeit begleitet Menschen mit geistiger Behinderung in vielen Bereichen ihres Lebens. In diesem Beitrag werden zwei konkrete Situationen fokussiert, um daran grundlegende Fragen an das Konstrukt der „Einwilligungsfähigkeit“ zu verdeutlichen. Zum einen wird die Praxis der Einwilligung im Bereich der Forschung mit Menschen mit geistiger Behinderung kritisch betrachtet. Zum anderen stellen Fragen der Einwilligung im Leben von lebensverkürzt erkrankten Kindern und Jugendlichen ein Feld für die Bewährung der Leitideen Selbstbestimmung und Teilhabe dar.