Best practice when service users do not consent to sharing information with carers. National multimethod study.
ABSTRACT 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.
To inform clinical practice when service users withhold consent to share information with their carer.
Study data were derived from a synthesis of policy review (n=91), national survey (n=595) and individual interviews (n=24).
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.
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.
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ABSTRACT: As community care has become embedded in the U.K. as in much of the western world more responsibility for psychosocial care has been placed on family carers. A systematic review of the literature about the role of family carers supporting a relative with severe mental illness and their relationships and engagement with professionals was carried out. The review aimed to find out what professionals expected of family carers and what family carers expected of themselves. Themes were identified: the distinct and personal nature of family caring, potentially effective family caring, barriers to effective caring and ways to overcome barriers. There were expectations that family carers were obligated to help support effective care, but that the rights to enable carers to fulfil these obligations were not consistently upheld. Barriers to upholding rights include: types of service provision, professional attitudes to communication and engagement with carers, and carer ability to cope. Recommendations for practice included: service provision aimed at including carers, more empathic communication by professionals, and a covenant between mental health services and people who depend on them. The idea of a covenant requires more discussion and research is needed into what is expected of family carers.Journal of Psychiatric and Mental Health Nursing 05/2011; 19(1):70-82. · 0.80 Impact Factor
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ABSTRACT: Family caregivers of people with mental disorders are frequently involved in involuntary hospital admissions of their relatives. To explore family caregivers' experience of involuntary admission of their relative. 30 in-depth interviews were conducted with family caregivers of 29 patients who had been involuntarily admitted to 12 hospitals across England. Interviews were analysed using thematic analysis. Four major themes of experiences were identified: relief and conflicting emotions in response to the relative's admission; frustration with a delay in getting help; being given the burden of care by services; and difficulties with confidentiality. Relief was a predominant emotion as a response to the relative's admission and it was accompanied by feelings of guilt and worry. Family caregivers frequently experienced difficulties in obtaining help from services prior to involuntary admission and some thought that services responded to crises rather than prevented them. Family caregivers experienced increased burden when services shifted the responsibility of caring for their mentally unwell relatives to them. Confidentiality was a delicate issue with family caregivers wanting more information and a say in decisions when they were responsible for aftercare, and being concerned about confidentiality of information they provided to services. Compulsory admission of a close relative can be a complex and stressful experience for family caregivers. In order for caregivers to be effective partners in care, a balance needs to be struck between valuing their involvement in providing care for a patient and not overburdening them.PLoS ONE 01/2011; 6(10):e25425. · 3.73 Impact Factor