Exploring the views of being a proxy from the perspective of unpaid carers and paid carers: developing a proxy version of the Adult Social Care Outcomes Toolkit (ASCOT).
ASCOT
Outcomes
Proxy
Quality of life
Social care
Journal
BMC health services research
ISSN: 1472-6963
Titre abrégé: BMC Health Serv Res
Pays: England
ID NLM: 101088677
Informations de publication
Date de publication:
29 Mar 2019
29 Mar 2019
Historique:
received:
29
03
2017
accepted:
19
03
2019
entrez:
30
3
2019
pubmed:
30
3
2019
medline:
18
6
2019
Statut:
epublish
Résumé
Outcomes-based policy and administration of public services present a compelling argument for the value of outcomes data. However, there are a number of challenges inherent in collecting these data from people who are unable to complete a paper-based survey or interview due to cognitive or communication impairments. In this paper, we explore the views of being a proxy from the perspective of unpaid carers and paid carers who may be asked to act as a proxy on behalf of the person(s) they care for. We consider the key issues that need to be addressed when adapting an instrument designed to measure social care outcomes, the Adult Social Care Outcomes Tool (ASCOT), into a proxy-report tool. Participants took part in either a focus group (35 paid carers in eight focus groups), or a one-to-one interview (eight unpaid carers). All participants were recruited via carer organisations and care providers. Transcripts, field notes and audio data collected during focus groups and interviews were analysed using a thematic framework approach. Participants agreed that any person acting as a proxy would need to be very familiar with the care recipient, as well as their needs and care provision. A number of provisions for proxy respondents were proposed to improve face validity and acceptability of completing a questionnaire by proxy, and to ensure that any potential bias is reduced in the design of the questionnaire. These included: providing two sets of response options for each proxy perspective (the proxy themselves and the proxy view of how they think the care recipient would respond); a comments box to help people explain why they have selected a given response option (especially where these indicate unmet need); and providing clear guidance for the proxy respondent on how they should complete the questionnaire. This study has shown some of the challenges involved in assessing outcomes by proxy and explored some potential ways these can be mitigated. The findings highlight the benefits of developing and testing proxy measures in a robust way to widen participation in social care research.
Sections du résumé
BACKGROUND
BACKGROUND
Outcomes-based policy and administration of public services present a compelling argument for the value of outcomes data. However, there are a number of challenges inherent in collecting these data from people who are unable to complete a paper-based survey or interview due to cognitive or communication impairments. In this paper, we explore the views of being a proxy from the perspective of unpaid carers and paid carers who may be asked to act as a proxy on behalf of the person(s) they care for. We consider the key issues that need to be addressed when adapting an instrument designed to measure social care outcomes, the Adult Social Care Outcomes Tool (ASCOT), into a proxy-report tool.
METHODS
METHODS
Participants took part in either a focus group (35 paid carers in eight focus groups), or a one-to-one interview (eight unpaid carers). All participants were recruited via carer organisations and care providers. Transcripts, field notes and audio data collected during focus groups and interviews were analysed using a thematic framework approach.
RESULTS
RESULTS
Participants agreed that any person acting as a proxy would need to be very familiar with the care recipient, as well as their needs and care provision. A number of provisions for proxy respondents were proposed to improve face validity and acceptability of completing a questionnaire by proxy, and to ensure that any potential bias is reduced in the design of the questionnaire. These included: providing two sets of response options for each proxy perspective (the proxy themselves and the proxy view of how they think the care recipient would respond); a comments box to help people explain why they have selected a given response option (especially where these indicate unmet need); and providing clear guidance for the proxy respondent on how they should complete the questionnaire.
CONCLUSIONS
CONCLUSIONS
This study has shown some of the challenges involved in assessing outcomes by proxy and explored some potential ways these can be mitigated. The findings highlight the benefits of developing and testing proxy measures in a robust way to widen participation in social care research.
Identifiants
pubmed: 30922307
doi: 10.1186/s12913-019-4025-1
pii: 10.1186/s12913-019-4025-1
pmc: PMC6440097
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
201Subventions
Organisme : Department of Health UK
ID : 25812
Références
Soc Psychiatry Psychiatr Epidemiol. 2004 May;39(5):397-401
pubmed: 15133597
Home Health Care Serv Q. 2004;23(1):25-42
pubmed: 15148047
Acta Oncol. 2004;43(3):229-34
pubmed: 15244245
Arch Otolaryngol Head Neck Surg. 2004 Nov;130(11):1276-81
pubmed: 15545581
Qual Life Res. 2005 Feb;14(1):107-18
pubmed: 15789945
Med Care. 2005 May;43(5):493-9
pubmed: 15838415
Mov Disord. 2005 Nov;20(11):1462-8
pubmed: 16028212
Qual Life Res. 2005 May;14(4):1025-33
pubmed: 16041898
J Am Geriatr Soc. 2005 Jul;53(7):1227-33
pubmed: 16108944
Gerontologist. 2005 Oct;45 Spec No 1(1):37-49
pubmed: 16230748
J Clin Epidemiol. 2006 Feb;59(2):153-9
pubmed: 16426950
Alzheimer Dis Assoc Disord. 2006 Jan-Mar;20(1):49-55
pubmed: 16493236
Qual Life Res. 2006 May;15(4):631-43
pubmed: 16688496
Stroke. 2006 Aug;37(8):2081-5
pubmed: 16809575
J Neurol Neurosurg Psychiatry. 2007 Oct;78(10):1072-5
pubmed: 17259351
Int J Geriatr Psychiatry. 2007 Oct;22(10):1031-6
pubmed: 17380488
Mult Scler. 2007 Nov;13(9):1190-4
pubmed: 17623731
J Clin Epidemiol. 2007 Sep;60(9):963-70
pubmed: 17689813
Int J Geriatr Psychiatry. 2008 Jun;23(6):604-10
pubmed: 18008392
Epilepsy Behav. 2008 Jul;13(1):202-11
pubmed: 18346941
Med Care. 2008 Nov;46(11):1140-8
pubmed: 18953224
Med Care. 2009 Feb;47(2):176-83
pubmed: 19169118
J Clin Nurs. 2009 Nov;18(22):3107-18
pubmed: 19207789
Aging Ment Health. 2009 Sep;13(5):706-14
pubmed: 19882409
Qual Life Res. 2010 Apr;19(3):425-34
pubmed: 20146008
Qual Life Res. 2010 Jun;19(5):721-7
pubmed: 20224902
Res Dev Disabil. 2010 Sep-Oct;31(5):1015-26
pubmed: 20478692
BMC Neurol. 2010 Jun 20;10:48
pubmed: 20565912
Value Health. 2011 Mar-Apr;14(2):390-9
pubmed: 21402307
J Pain Symptom Manage. 2011 Sep;42(3):354-65
pubmed: 21454041
Qual Life Res. 2012 Jun;21(5):801-12
pubmed: 21894489
Gerontologist. 2012 Feb;52(1):56-65
pubmed: 21903614
BMC Neurol. 2011 Sep 30;11:118
pubmed: 21961477
J Adv Nurs. 2012 Oct;68(10):2237-46
pubmed: 22211637
Health Qual Life Outcomes. 2012 Feb 10;10:21
pubmed: 22325334
Aging Ment Health. 2012;16(5):603-7
pubmed: 22360734
Dement Geriatr Cogn Disord. 2012;33(1):11-7
pubmed: 22378499
Health Technol Assess. 2012;16(16):1-166
pubmed: 22459668
Aging Ment Health. 2012;16(7):819-27
pubmed: 22486538
J Trauma Acute Care Surg. 2012 Apr;72(4):1102-5
pubmed: 22491635
Int Psychogeriatr. 2012 Nov;24(11):1805-15
pubmed: 22697366
Dement Geriatr Cogn Disord. 2012;34(1):7-14
pubmed: 22854507
Am J Hosp Palliat Care. 2013 Aug;30(5):462-6
pubmed: 22859555
Med Decis Making. 2013 Feb;33(2):252-60
pubmed: 23184462
Crit Care Med. 2013 Jan;41(1):9-14
pubmed: 23232287
BMC Med Res Methodol. 2013 Sep 06;13:110
pubmed: 24011428
BMC Med Res Methodol. 2013 Sep 18;13:117
pubmed: 24047204
Rheumatol Int. 2014 Dec;34(12):1743-9
pubmed: 24859395
Alzheimer Dis Assoc Disord. 2015 Jan-Mar;29(1):50-4
pubmed: 24936799
Health Qual Life Outcomes. 2017 May 19;15(1):108
pubmed: 28526055