The road barely taken: funerals and people with intellectual disabilities

Background: The topic of funerals within the life cycle approach to care in the UK remains largely absent. This small exploratory study sought to investigate how practitioners deal with this sensitive issue and to capture the views of older people with and without intellectual disabilities about funerals.

Methods: A semi-structured questionnaire was administered to 40 service managers, and five focus groups for 26 people with and without intellectual disabilities were facilitated. Questionnaires were subjected to thematic content analysis; focus group data were analysed using a grounded theory approach.

Results: Managers demonstrated confusion about organizing the funerals of people with intellectual disabilities. Few differences existed between the views of people with and without intellectual disabilities in relation to funerals and a number of core themes were identified including the lack of opportunities to attend funerals.

Conclusions: More thought and practical interventions are needed to support vulnerable people to participate in the funerals of people they know.