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

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.