Personal relationships during end-of-life care: Support staff views of issues for individuals with intellectual disability.
Support staff need a written plan that keeps friends in the room and gives staff clear roles when an adult with ID faces the end of life.
01Research in Context
What this study did
Hussain et al. (2019) talked to 12 support staff in two UK learning-disability homes. The adults they served were dying or had a life-ending illness.
Staff shared how friendships and family ties changed after the diagnosis. They also told how moves to new homes shook these bonds.
What they found
Family phone calls and visits stayed the same. Friends got no counseling and often vanished.
Support workers felt lost. They did not know if they should comfort friends, plan visits, or stay quiet.
How this fits with other research
Bergmann et al. (2019) found adults with ID want close ties but are blocked by rules and staff fears. Rafat shows the blocks stay strong even at death.
Y-Spanoudis et al. (2011) saw family contact stay flat after a move. Rafat echoes this, but adds that friends are left out in the cold.
Hsieh et al. (2009) link smaller, friendlier homes to longer life. Rafat warns that without a relationship plan, a move still harms social life even in small homes.
Why it matters
End-of-life plans rarely list friends or define staff roles. Add one page: name the friends, offer counseling, and spell out who phones whom before any move. This keeps social nets intact when they matter most.
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Join Free →Open the current care plan, add a 'Friends and Staff Roles' section, and list one action for each named friend.
02At a glance
03Original 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 the 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.
Research in developmental disabilities, 2019 · doi:10.1016/j.ridd.2019.01.005