Anne Marie Tunney and Assumpta Ryan discuss a study that used the experiences of women caring for survivors to assist service redesign

Aim The aim of this study was to explore how members of a stroke carers’ support group perceived that services for stroke patients and their carers could be improved.

Method A qualitative, experience-based design approach was used to explore the views of ten carers of stroke survivors. Experience questionnaires and a listening lab were used for data collection. Data analysis was carried out using thematic content analysis of the questionnaire and audiotaped transcripts.

Findings Common themes identified included carer loneliness, lack of information, effect of stroke on relationships, carer emotions, loss of privacy and need for ongoing support.

Conclusion There are many advantages to be gained for users and organisations from user involvement in service redesign and delivery.