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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
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 |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life |
| Depositing User: | Pure Connector |
| Date Deposited: | 06 Jan 2014 14:46 |
| Last Modified: | 24 Oct 2022 05:52 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/46951 |
| DOI: | 10.1111/hex.12012 |
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