The relevance of recovery to carers of people who have schizophrenia

Recovery is a new concept positing that people with schizophrenia can lead fulfilling, satisfying, and productive lives. Family carers often play a helpful but largely unacknowledged role in the support of service users with schizophrenia, and the nature of their contribution to and their role in recovery has hitherto not been investigated. This original PhD explores whether learning about the recovery approach through participation in a training intervention changes the way carers view recovery, whether they find the concept helpful, whether it modifies their behaviour, and their evaluation of the intervention. A participatory action research methodology was applied in this study, actively supported by a steering group consisting of different stakeholders. Training on the recovery approach was delivered to a group of eleven carers to explore their response to the recovery concept. The training programme was delivered by me and a carer, utilising my personal experience as a service user with the diagnosis of schizophrenia. Focus groups and individual, semi-structured follow-up interviews were applied to assess self-reported changes in attitudes and behaviours. Mainly qualitative data were collected with supplementary socio-demographic data. The analysis of the qualitative data suggests that being more ‘recovery-aware’ gives carers increased hope and optimism for their own and the service user’s future. Greater awareness of the impact of caring upon the service user’s life helps them to begin to care in such a way as to promote recovery in the service user, and gain more confidence in their own expertise-by-caring. Professionals have a key role to play in recovery, a three-cornered partnership between the carer, professionals and the service user is desirable. The carers evaluated the training programme as helpful, and particularly valued its authenticity as it was led by a service user and carer trainers. Conclusions suggest that recovery is a helpful concept for carers. It shows that learning about recovery helps them to care more effectively for the service user and for themselves. It suggests the usefulness of developing a recovery concept for carers based on reconciliation of their caring identity, their caring role and their relationships with the service user and professionals. Recovery for the service user and for the carer requires support from professionals, based on a partnership service model, a contribution to the development of recovery practice. The training programme is a useful way of conveying the hope in recovery and is strengthened by the service user perspective of recovery.