Challenges in providing end-of-life care for people with intellectual disability: Health services access

Abstract

Background: Increasing life expectancy for people with intellectual disability is resulting in greater need for end-of-life care services. However, limited knowledge is available regarding what barriers to accessing end-of-life care support are evident, particularly comparatively across rural and metropolitan locations.

Methods: Focus group interviews were undertaken with 35 direct-care staff from four rural and two metropolitan locations. A semistructured interview guide was used, with a focus on health service access. All focus group data were independently transcribed, with thematic analysis then performed.

Results: Frequency analysis identified 262 statements relating to health services access. Thematic analysis identified four key areas of "isolation," "support from doctors," "general health support access" and "internal staffing issues."

Conclusions: Improved access to end-of-life services is urgently required across both rural and metropolitan areas. Development of specialist training and support models for both disability and general healthcare staff may assist to reduce some identified barriers.

Keywords: Australia; end of life; health services; intellectual disability; metropolitan; palliative care.