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Title: Personal relationships during end-of-life care: Support staff views of issues for individuals with intellectual disability
Contributor(s): Hussain, Rafat  (author); Wark, Stuart  (author)orcid ; Muller, Arne (author); Ryan, Peta  (author)orcid ; Parmenter, Trevor  (author)
Publication Date: 2019-04
Early Online Version: 2019-02-02
DOI: 10.1016/j.ridd.2019.01.005
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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.
Publication Type: Journal Article
Source of Publication: Research in Developmental Disabilities, v.87, p. 21-30
Publisher: Elsevier Ltd
Place of Publication: United Kingdom
ISSN: 1873-3379
Fields of Research (FoR) 2008: 111703 Care for Disabled
111708 Health and Community Services
111702 Aged Health Care
Fields of Research (FoR) 2020: 420305 Health and community services
420301 Aged health care
Socio-Economic Objective (SEO) 2008: 920211 Palliative Care
920502 Health Related to Ageing
920403 Disability and Functional Capacity
Socio-Economic Objective (SEO) 2020: 200309 Palliative care
200502 Health related to ageing
200403 Disability and functional capacity
Peer Reviewed: Yes
HERDC Category Description: C1 Refereed Article in a Scholarly Journal
Appears in Collections:Journal Article
School of Rural Medicine

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