Advanced

Family members' experiences of personal assistance given to a relative with disabilities.

Ahlström, Gerd LU and Wadensten, Barbro (2011) In Health & Social Care in the Community 19. p.645-652
Abstract
Personal assistance is a type of home care common to many countries even though entitlement and legislative framework may vary from country to country. At present, there exists no knowledge about the family members' experiences of such assistance; therefore, the aim of this study was to investigate family members' experiences of personal assistance given to a relative of working age with a functional disability. Twenty-five family members who had a relative with a severe neurological disease in Sweden were interviewed about the significance of personal assistance, and the qualitative interviews were subjected to qualitative latent content analysis. The overall findings verify the close connection between the family members' experiences and... (More)
Personal assistance is a type of home care common to many countries even though entitlement and legislative framework may vary from country to country. At present, there exists no knowledge about the family members' experiences of such assistance; therefore, the aim of this study was to investigate family members' experiences of personal assistance given to a relative of working age with a functional disability. Twenty-five family members who had a relative with a severe neurological disease in Sweden were interviewed about the significance of personal assistance, and the qualitative interviews were subjected to qualitative latent content analysis. The overall findings verify the close connection between the family members' experiences and their perception of the quality of the caring relationship between the personal assistant and the person with disability. The main finding was an appreciation of the personal assistance on the part of the family members. However, in situations where the encounter between the assistant and the relative with disability was perceived negatively, the family members experienced great anxiety. The shortcomings were the inability to maintain a private life with assistance and the limitation of choice because of the shortage of personal assistants. Beyond these general findings, this study found that personal assistance was experienced by the family members in terms of dignity and empowering care. This theme was generated from seven subthemes: Insight into private life, Security through the close relation, Social life through freedom of movement, Influence over the organisation of assistance, Self-determination and understanding, Friendship and mutual respect and Adaption to the dependency on assistance. The findings indicate that responsible officials, work leaders and assistants need constantly to improve the implementation of the law. In such efforts, the experiences of family members described in this study are a source of knowledge. (Less)
Please use this url to cite or link to this publication:
author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Health & Social Care in the Community
volume
19
pages
645 - 652
publisher
Wiley-Blackwell
external identifiers
  • wos:000296246800007
  • pmid:21651637
  • scopus:80054026790
ISSN
0966-0410
DOI
10.1111/j.1365-2524.2011.01006.x
language
English
LU publication?
yes
id
7df17ecf-b302-4b18-ac1a-6591849fd8dc (old id 2008362)
alternative location
http://www.ncbi.nlm.nih.gov/pubmed/21651637?dopt=Abstract
date added to LUP
2011-07-04 11:39:15
date last changed
2017-09-10 04:45:30
@article{7df17ecf-b302-4b18-ac1a-6591849fd8dc,
  abstract     = {Personal assistance is a type of home care common to many countries even though entitlement and legislative framework may vary from country to country. At present, there exists no knowledge about the family members' experiences of such assistance; therefore, the aim of this study was to investigate family members' experiences of personal assistance given to a relative of working age with a functional disability. Twenty-five family members who had a relative with a severe neurological disease in Sweden were interviewed about the significance of personal assistance, and the qualitative interviews were subjected to qualitative latent content analysis. The overall findings verify the close connection between the family members' experiences and their perception of the quality of the caring relationship between the personal assistant and the person with disability. The main finding was an appreciation of the personal assistance on the part of the family members. However, in situations where the encounter between the assistant and the relative with disability was perceived negatively, the family members experienced great anxiety. The shortcomings were the inability to maintain a private life with assistance and the limitation of choice because of the shortage of personal assistants. Beyond these general findings, this study found that personal assistance was experienced by the family members in terms of dignity and empowering care. This theme was generated from seven subthemes: Insight into private life, Security through the close relation, Social life through freedom of movement, Influence over the organisation of assistance, Self-determination and understanding, Friendship and mutual respect and Adaption to the dependency on assistance. The findings indicate that responsible officials, work leaders and assistants need constantly to improve the implementation of the law. In such efforts, the experiences of family members described in this study are a source of knowledge.},
  author       = {Ahlström, Gerd and Wadensten, Barbro},
  issn         = {0966-0410},
  language     = {eng},
  pages        = {645--652},
  publisher    = {Wiley-Blackwell},
  series       = {Health & Social Care in the Community},
  title        = {Family members' experiences of personal assistance given to a relative with disabilities.},
  url          = {http://dx.doi.org/10.1111/j.1365-2524.2011.01006.x},
  volume       = {19},
  year         = {2011},
}