Personal relationships during end-of-life care: Support staff views of issues for individuals with intellectual disability
| Autor: | Trevor R. Parmenter, Rafat Hussain, Stuart Wark, Arne Müller, Peta Ryan |
|---|---|
| Rok vydání: | 2018 |
| Předmět: |
Gerontology
Male 030506 rehabilitation Attitude of Health Personnel Friends Interview guide 03 medical and health sciences Intellectual Disability Intellectual disability Developmental and Educational Psychology medicine Humans 0501 psychology and cognitive sciences Family Interpersonal Relations Terminal Care 05 social sciences Role Focus Groups medicine.disease Metropolitan area Focus group Clinical Psychology Life expectancy Female Queensland Thematic analysis New South Wales 0305 other medical science Psychology End-of-life care 050104 developmental & child psychology |
| Zdroj: | University of New England Australia |
| ISSN: | 1873-3379 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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