Personal relationships during end-of-life care: Support staff views of issues for individuals with intellectual disability
Background: Life expectancy for persons with intellectual disability has increased dramatically over the past decade, which has seen an associated rise in the need for end-of-life care. However, little is known regarding how end-of-life affects the individual’s personal relationships with family, friends and staff. Methods: Focus group interviews were undertaken with 35 disability support workers from four rural and two metropolitan locations in NSW and Queensland, Australia. A semi-structured interview guide was used, with a focus on gaining an understanding of the impact that end-of-life has on personal relationships for persons with intellectual disability. Results: The thematic analysis identified three key thematic areas: Relationships with Family, Relationships with Friends and Staff Roles. Relationships with Family had three sub-themes of ‘Active and Ongoing’, ‘Active but Limited’ and ‘After Death’. Relationships with Friends had two sub-themes of ‘Positive Experiences’ and ‘Negative Experiences’, and Staff Roles had two sub-themes of ‘Loss of Contact’ and ‘Default Decision Making’. Discussion: The frequency of family contact was not reported as increasing or decreasing following the diagnosis of a life-ending illness and during an individual’s end-of-life. A lack of counselling support was noted as potentially impairing the individual’s friends’ ability to cope with death. Staff also reported a number of concerns regarding how their relationships with the individual changed, particularly when end-of-life entailed potential movement of the individual with intellectual disability to a new residential setting.
Challenges in providing end-of-life care for people with intellectual disability: Health services access
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.