Please use this identifier to cite or link to this item:
https://hdl.handle.net/1959.11/26432
Full metadata record
DC Field | Value | Language |
---|---|---|
dc.contributor.author | Hussain, Rafat | en |
dc.contributor.author | Wark, Stuart | en |
dc.contributor.author | Muller, Arne | en |
dc.contributor.author | Ryan, Peta | en |
dc.contributor.author | Parmenter, Trevor | en |
dc.date.accessioned | 2019-03-11T09:01:53Z | - |
dc.date.available | 2019-03-11T09:01:53Z | - |
dc.date.issued | 2019-04 | - |
dc.identifier.citation | Research in Developmental Disabilities, v.87, p. 21-30 | en |
dc.identifier.issn | 1873-3379 | en |
dc.identifier.issn | 0891-4222 | en |
dc.identifier.uri | https://hdl.handle.net/1959.11/26432 | - |
dc.description.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. | en |
dc.language | en | en |
dc.publisher | Elsevier Ltd | en |
dc.relation.ispartof | Research in Developmental Disabilities | en |
dc.title | Personal relationships during end-of-life care: Support staff views of issues for individuals with intellectual disability | en |
dc.type | Journal Article | en |
dc.identifier.doi | 10.1016/j.ridd.2019.01.005 | en |
dc.identifier.pmid | 30721803 | en |
local.contributor.firstname | Rafat | en |
local.contributor.firstname | Stuart | en |
local.contributor.firstname | Arne | en |
local.contributor.firstname | Peta | en |
local.contributor.firstname | Trevor | en |
local.subject.for2008 | 111703 Care for Disabled | en |
local.subject.for2008 | 111708 Health and Community Services | en |
local.subject.for2008 | 111702 Aged Health Care | en |
local.subject.seo2008 | 920211 Palliative Care | en |
local.subject.seo2008 | 920502 Health Related to Ageing | en |
local.subject.seo2008 | 920403 Disability and Functional Capacity | en |
local.profile.school | School of Rural Medicine | en |
local.profile.school | School of Rural Medicine | en |
local.profile.school | Intersect Australia | en |
local.profile.school | School of Rural Medicine | en |
local.profile.email | rhussain@une.edu.au | en |
local.profile.email | swark5@une.edu.au | en |
local.profile.email | pryan9@une.edu.au | en |
local.profile.email | tparment@une.edu.au | en |
local.output.category | C1 | en |
local.record.place | au | en |
local.record.institution | University of New England | en |
local.publisher.place | United Kingdom | en |
local.format.startpage | 21 | en |
local.format.endpage | 30 | en |
local.identifier.scopusid | 85060850544 | en |
local.peerreviewed | Yes | en |
local.identifier.volume | 87 | en |
local.title.subtitle | Support staff views of issues for individuals with intellectual disability | en |
local.contributor.lastname | Hussain | en |
local.contributor.lastname | Wark | en |
local.contributor.lastname | Muller | en |
local.contributor.lastname | Ryan | en |
local.contributor.lastname | Parmenter | en |
dc.identifier.staff | une-id:rhussain | en |
dc.identifier.staff | une-id:swark5 | en |
dc.identifier.staff | une-id:pryan9 | en |
dc.identifier.staff | une-id:tparment | en |
local.profile.orcid | 0000-0002-5366-1860 | en |
local.profile.orcid | 0000-0001-9476-7277 | en |
local.profile.role | author | en |
local.profile.role | author | en |
local.profile.role | author | en |
local.profile.role | author | en |
local.profile.role | author | en |
local.identifier.unepublicationid | une:1959.11/26432 | en |
local.date.onlineversion | 2019-02-02 | - |
dc.identifier.academiclevel | Academic | en |
dc.identifier.academiclevel | Academic | en |
dc.identifier.academiclevel | Academic | en |
dc.identifier.academiclevel | Academic | en |
dc.identifier.academiclevel | Academic | en |
local.title.maintitle | Personal relationships during end-of-life care | en |
local.relation.fundingsourcenote | Endeavour Foundation Endowment Challenge Fund | en |
local.output.categorydescription | C1 Refereed Article in a Scholarly Journal | en |
local.search.author | Hussain, Rafat | en |
local.search.author | Wark, Stuart | en |
local.search.author | Muller, Arne | en |
local.search.author | Ryan, Peta | en |
local.search.author | Parmenter, Trevor | en |
local.uneassociation | Unknown | en |
local.identifier.wosid | 000461003500003 | en |
local.year.available | 2019 | en |
local.year.published | 2019 | en |
local.fileurl.closedpublished | https://rune.une.edu.au/web/retrieve/9946dd11-cabe-4df2-8271-1f83ef97b7f5 | en |
local.subject.for2020 | 420305 Health and community services | en |
local.subject.for2020 | 420301 Aged health care | en |
local.subject.seo2020 | 200309 Palliative care | en |
local.subject.seo2020 | 200502 Health related to ageing | en |
local.subject.seo2020 | 200403 Disability and functional capacity | en |
dc.notification.token | 6602e68a-3b08-4b4e-94f1-7ecc30401258 | en |
Appears in Collections: | Journal Article School of Rural Medicine |
Files in This Item:
File | Size | Format |
---|
SCOPUSTM
Citations
5
checked on Aug 31, 2024
Page view(s)
2,566
checked on May 19, 2024
Download(s)
4
checked on May 19, 2024
Items in Research UNE are protected by copyright, with all rights reserved, unless otherwise indicated.