‘If and When?’: The Beliefs and Experiences of Community Living Staff in Supporting Older People with Intellectual Disability to Know about Dying

Michele Y Wiese, Angela Dew, Roger J Stancliffe, Glennys Howarth, Susan Balandin


Background: The aim of this study was to explore the way in which community living staff engaged with people with intellectual disability (ID) about dying and death.

Method: Guided by grounded theory methodology, focus groups and individual interviews were conducted with staff who had either no experience with client death, experience of a client sudden death, or a client death experience which was pre-dated by a period of end-of-life care.

Results: While in principle, staff unanimously supported the belief that people with ID should know about dying, there was limited in-practice engagement with clients about the topic. Engagement varied according to staff experience, client capacity to understand and the nature of the ‘opportunity’ to engage. Four ‘opportunities’ were identified: ‘when family die’, ‘incidental opportunities’, ‘when clients live with someone who is dying’ and ‘when a client is dying’. Despite limited engagement by staff, people with ID are regularly exposed to dying and death.

Conclusions: People with ID have a fundamental right to know about dying and death. Sophisticated staff skills are required to ensure that people with ID can meaningfully engage with end-of-life issues as opportunities arise.

Suggested Citation

Wiese, M., Dew, A., Stancliffe, R. J., Howarth, G., & Balandin, S. (2012). ‘If and when?’: the beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying. Journal of Intellectual Disability Research, 57(10), 980–992. https://doi.org/10.1111/j.1365-2788.2012.01593.x


Peer-Reviewed Article