What do relatives experience when supporting someone in early psychosis?

OBJECTIVES: In the United Kingdom (UK), the government has set out priorities to support relatives and carers. Despite this, many relatives of people experiencing psychosis continue to feel unsupported by mental health services. This may be due to lack of funding, high caseloads for mental health professionals, or due to a lack of understanding of what relatives experience as a result of their family member's psychosis. This research aimed to explore relatives' experiences of supporting a relative in early psychosis. DESIGN: Thematic analysis was used to conduct an in-depth study of relatives' experiences of supporting a family member in early psychosis. METHODS: Eligible individuals were recruited via local National Health Service Early Intervention Teams and other carer support agencies. Four focus groups were conducted, each with a range of five to seven participants. RESULTS: Four key themes 'reflecting relatives' understanding and management of psychosis were identified: 'Psychosis from the relatives' perspective'; 'Relatives' fight with the mental health 'system'; 'Is anybody listening? Does anyone understand?'; and 'Relatives' coping'. Clinical implications of these themes are discussed. CONCLUSIONS: This study has clear implications for improvement in how relatives are supported in the United Kingdom, such as; clearer guidance for staff about confidentiality, treating relatives as partners in care and providing better quality information for relatives. PRACTITIONER POINTS: Continue to improve the Care Plan Approach process to include relatives as partners in care. Information available about psychosis needs to be clear and, where possible, clarify the processes and protocols by which services operate and how to access appropriate help. Move away from simplistic rules about confidentiality and formalise procedures to allow relatives and carers access to the information they need, without impeding service users' rights. For example, providing additional training for professionals such as Rethink's 'Carers and Confidentiality' online resource (http://www.carersandconfidentiality.org.uk/). Improved support, supervision and training are needed for staff to deal with relatives' distress and the impact of psychosis. Relatives' experiences of services is more positive in specialist Early Interventions Services for psychosis, than in other health service teams.