title: Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique.
abstract: BACKGROUND
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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 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.
authors.affiliation: Kingston University & St George's University of London, Faculty of Health, Social Care and Education, Cranmer Terrace, London, SW17 0RE, UK. I.Tuffrey-Wijne@sgul.kingston.ac.uk.
authors.forename: I
authors.initials: I
authors.lastname: Tuffrey-Wijne
authors.affiliation: Internationale Hochschule für Heilpädagogik Zürich, Zürich, Switzerland.
authors.forename: M
authors.initials: M
authors.lastname: Wicki
authors.affiliation: Norah Fry Research Centre, School for Policy Studies, University of Bristol, Bristol, UK.
authors.forename: P
authors.initials: P
authors.lastname: Heslop
authors.affiliation: Trinity College, University of Dublin, Dublin, Ireland.
authors.forename: M
authors.initials: M
authors.lastname: McCarron
authors.affiliation: Faculty of Life Sciences and Education, University of South Wales, Cardiff, Newport, UK.
authors.forename: S
authors.initials: S
authors.lastname: Todd
authors.affiliation: Tizard Centre, University of Kent, Kent, UK.
authors.forename: D
authors.initials: D
authors.lastname: Oliver
authors.affiliation: Netherlands Institute for Health Services Research, Utrecht, The Netherlands.
authors.forename: A
authors.initials: A
authors.lastname: de Veer
authors.affiliation: Lunds Universitet, Lund, Sweden.
authors.forename: G
authors.initials: G
authors.lastname: Ahlström
authors.affiliation: Department Muenster, Catholic University of Applied Sciences, Muenster, Germany.
authors.forename: S
authors.initials: S
authors.lastname: Schäper
authors.affiliation: Trinity College, University of Dublin, Dublin, Ireland.
authors.forename: G
authors.initials: G
authors.lastname: Hynes
authors.affiliation: Trinity College, University of Dublin, Dublin, Ireland.
authors.forename: J
authors.initials: J
authors.lastname: O'Farrell
authors.affiliation: University of Applied Sciences of Special Needs Education, Zürich, Switzerland.
authors.forename: J
authors.initials: J
authors.lastname: Adler
authors.affiliation: Division of Psychiatry Research and Psychogeriatric Medicine, Zurich, Switzerland.
authors.forename: F
authors.initials: F
authors.lastname: Riese
authors.affiliation: Maastricht University Medical Centre, Governor Kremers Centre, Maastricht, The Netherlands.
authors.forename: L
authors.initials: L
authors.lastname: Curfs
mesh_terms: D032921:Consensus; D005060:Europe; D006302:Health Services Research; D006801:Humans; D008607:Intellectual Disability / Q000628:therapy*; D010166:Palliative Care / Q000379:methods*; D012106:Research
keywords: Consensus methods; Health services research; Intellectual disabilities; Nominal group technique; Palliative care; Research priorities