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 ORCID: https://orcid.org/0000-0003-0003-6911 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 Health Sciences
Depositing User: Pure Connector
Date Deposited: 06 Jan 2014 14:46
Last Modified: 19 Sep 2022 04:46
URI: https://ueaeprints.uea.ac.uk/id/eprint/46951
DOI: 10.1111/hex.12012

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