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

• DOI: 10.1186/s12904-016-0108-5
• Publication Date: 2016-03-24T02:07:50Z
• Authors: I. Tuffrey-Wijne; M. Wicki; P. Heslop; M. McCarron; S. Todd; D. Oliver; A. de Veer; G. Ahlström; S. Schäper; G. Hynes; J. O’Farrell; J. Adler; F. Riese; L. Curfs
• Keywords: Scope (computer science); Nominal Group Technique; Best practice

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