Hope in primary caregivers' experience of first episode psychosis

Introduction: Primary caregivers provide essential care and support to people with psychosis and are often key players within recovery. The recovery model and an expanding research literature suggest that the concept of hope is an important factor in adaptively coping with psychosis and also serves a critical role within recovery. The present study sought to explore how hope featured within the experiences of six primary caregivers of young people with first episode psychosis within the context of two UK early intervention services. Method: Interpretive Phenomenological Analysis was adopted as the methodological framework with which to approach the research and analyse the data. Primary caregivers were interviewed about their experiences of supporting and caring for a young person with first episode psychosis. Results: Five major themes were identified as characterising the experiences of participants. Caregivers experienced a maelstrom of distressing change and loss following the young person’s psychosis and struggled to make sense of what was happening. A range of experiences were also described during the young person’s recovery and receiving help from services. Hope was described as an important factor in sustaining and motivating caregivers through the demands of care giving and in their efforts to support the young person towards recovery. Discussion: Having experienced a range of distressing and often traumatising experiences, the findings of the present study suggest that caregivers have a range of parallel support and recovery needs. In particular, the findings highlight the need for caregivers and their families to jointly making sense of the young person’s psychosis from a very early stage. The findings also indicate that service providers should seek to nurture the hopes of carers and a range of possible interventions are suggested. The experiences described by caregivers within the present study may also have implications for understanding the development of expressed emotion within the context of first episode psychosis.