Involving service users in the development of the Support at Home:Interventions to Enhance Life in Dementia Carer Supporter Programme for family carers of people with dementia

Burnell, Karen J, Selwood, Amber, Sullivan, Theresa, Charlesworth, Georgina M, Poland, Fiona and Orrell, Martin (2015) Involving service users in the development of the Support at Home:Interventions to Enhance Life in Dementia Carer Supporter Programme for family carers of people with dementia. Health Expectations, 18 (1). pp. 95-110. ISSN 1369-6513

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Abstract

BACKGROUND: Involving service users in research can be an effective way of improving the practicalities and acceptability of interventions for target end users. OBJECTIVES: The current paper presented two consensus methods, not commonly used in consultation with service users, to develop a peer support intervention for family carers of people with dementia (SHIELD Carer Supporter Programme). DESIGN: Study 1 was a modified Delphi process combined with a consensus conference to explore details of the intervention from the carer and volunteer perspective. Study 2 was an anonymous reader consultation to develop informed consent documents for the intervention trial. Median scores were used to measure and establish consensus. Open-ended responses were thematically analysed. SETTING AND PARTICIPANTS: Study 1: twenty-five delegates participated (eight were current/former carers) in the first round Delphi questionnaire, with 21 attending the conference. Five completed the Round 2 questionnaire. Study 2: six family carers and 11 people with dementia took part in the consultation. RESULTS: Study 1: the role of the peer supporters was developed in terms of relational and practical aspects of the intervention. Study 2: changes were made to the documents, reflecting service user input, but the effectiveness of this less discursive type of service user involvement was unclear. DISCUSSION AND CONCLUSIONS: Study 1 methods allowed for service users to contribute significantly and meaningfully, but maybe limiting some design innovation. Study 2 took a more traditional and less collaborative approach. This has implications for balancing the needs of the research with meaningful service user involvement in research.

Item Type: Article
Additional Information: © 2012 Blackwell Publishing Ltd.
Uncontrolled Keywords: carer,dementia,consultation methods,delphi methods,informed consent consultation,service user involvement
Faculty \ School: Faculty of Medicine and Health Sciences > School of Rehabilitation Sciences
Depositing User: Pure Connector
Date Deposited: 06 Jan 2014 14:46
Last Modified: 21 Apr 2020 22:41
URI: https://ueaeprints.uea.ac.uk/id/eprint/46951
DOI: 10.1111/hex.12012

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