Best practice when service users do not consent to sharing information with carers: National multimethod study

Abstract

Background: Service users with psychosis may not consent to sharing information with carers. However, carers require access to relevant information to support them in their role. Aims: To inform clinical practice when service users withhold consent to share information with their carer. Method: Study data were derived from a synthesis of policy review (n=91), national survey (n=595) and individual interviews (n=24). Results: Key principles to guide information-sharing practices were identified. Service users highlighted confidentiality being guaranteed by consent processes. Carers suggested a 'culture shift' was required, with professionals trained to work with carers. Professionals emphasised mental capacity, professional judgement and the context of care. A best practice framework is proposed. Conclusions: An important distinction is between general information, which can always be shared without consent, and personal information, which is new to the carer and where consent needs to be considered. Clinical judgement is central to balancing conflicting ethical imperatives in this area.