Personal relationships during end-of-life care: Support staff views of issues for individuals with intellectual disability

Abstract

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.