SEARCH

SEARCH BY CITATION

Keywords:

  • attitudes;
  • death and dying;
  • learning disabilities;
  • Nominal Group Technique;
  • palliative care;
  • patient participation;
  • qualitative approaches

Abstract

Title. Using Nominal Group Technique to investigate the views of people with intellectual disabilities on end-of-life care provision

Aim.  This paper is a report of a study using the Nominal Group Technique as a method to elicit the views of people with intellectual disabilities on sensitive issues, in this example end-of-life care provision.

Background.  Establishing consumer views is essential in providing appropriate end-of-life care, yet people with intellectual disabilities have historically been excluded from giving their opinion and participating in research.

Methods.  Nominal Group Technique was used in three groups, with a total of 14 participants who had mild and moderate intellectual disabilities. This technique involves four steps: (1) silent generation of ideas, (2) round robin recording of ideas; (3) clarification of ideas and (4) ranking of ideas (voting). Participants were presented with an image of a terminally ill woman (Veronica), and were asked: ‘What do you think people could do to help Veronica?’

Findings.  Participants generated a mean of nine individual responses. The highest rankings were given to issues around involvement in one's own care, presence of family and friends, offering activities to the ill person, and physical comfort measures.

Conclusion.  People with mild and moderate intellectual disabilities are capable of expressing their views on end-of-life care provision, and should be asked to do so. The Nominal Group Technique presents an effective and acceptable methodology in enabling people with intellectual disabilities to generate their views.