A cluster randomized study on implementation of guidelines on family involvement during severe mental illness

Next of kin of persons with severe mental illness often feel neglected by mental health care. This can be negative for the family, the patient, the quality of the services, and for society. For many years, Norway has had national recommendations for family involvement in mental health services, and this also an important part of the treatment guidelines for patients with severe mental health problems. Despite solid evidence, many examples of good practices, and weighty moral arguments to strengthen the triadic collaboration between the patient, the family (broadly understood) and the professionals, research shows that family involvement is often still inadequate in mental health services. This project aims to improve the health services and psychosocial health of patients with severe mental illness and their relatives through the implementation of evidence-based measures and good practices for family involvement, eg. to appoint a relatives coordinator, provide training and guidance to the employees, written routines, a minimum standard for service provision that should be provided all patients and their relatives, family psychoeducation, and systematic handling of ethical dilemmas that may arise in the cooperation between the patient, the relatives and the healthcare professionals. The project is an interdisciplinary multi-centre study, and a collaboration between hospital trusts in Norway in the south-east of Norway, TIPS South-East, OsloMet, Akershus University Hospital, University of South-Eastern Norway, and the University of Oslo (UiO), and is coordinated by the Center for Medical Ethics at the UiO. The project period is October 1st 2017 to 31st of December 2021. 15 outpatient units providing treatment to patients with psychoses participate in the study. 8 units have been randomized to the intervention group, and 7 to the control group. The project has mapped the implementation of national recommendations for family involvement during severe mental illness in the participating units, and investigates barriers and facilitators to implement these recommendations at different levels, including moral dilemmas and conflicting interests related to family involvement - and how they can be handled. In 2019 and 2020 the project has provided implementation support to the intervention units to improve the implementation of the national recommendations, and investigates whether this increases the implementation fidelity, the significance and effects for the patient and their next of kin, and whether the benefits can justify the costs. Around 250 couples of patients and the closest next of kin (500 patients and relatives in total) have been recruited to the study, and several qualitative interviews with different stakeholders have been undertaken, as well as four assessments of implementation fidelity at the participating units. The project bridges the gap between knowledge and practice, and preliminary results indicate that it the triadic cooperation between the patient, the relatives and the professionals is improved. In 2021 also the control units have received implementation support through the project. This implementation study combines responsive and participatory action research methodology with a cluster-randomized design, in addition to political economic analysis and empirical ethics. The results of the project will be useful also for other parts of health- and welfare services that require close collaboration between the users and their next of kin.

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Families (broadly defined) of people experiencing severe mental illness often feel marginalized and ignored by mental health services. This impacts negatively on people receiving services, families, the quality and efficiency of mental health care, and on society in general. In Norway, national guidelines on family involvement have existed for several years and a revised version is expected this year. Despite strong evidence of the benefits, good practice examples, and a convincing moral case for empowering citizens in health care, research indicates that implementation of family involvement is still often lacking. This project aims to improve health services and the psychosocial health of people with severe mental illness and their families through implementing well-researched interventions and good practices on family involvement. This project will map the implementation of selected core elements of the national guideline for family involvement during severe mental illness, investigate barriers and facilitators to implementing well-researched interventions and good practices, explore the most important moral dilemmas and conflicting interests related to family involvement - and how can these be dealt with, improve the implementation of selected core elements in the national guidelines through a comprehensive implementation support program involving all stakeholders, and investigate whether implementation of selected core elements improves selected outcomes for patients, family, and staff. This project will bridge the gap between knowledge and practice, and will improve triadic collaboration between users/patients, families and staff by introducing an implementation strategy that is responsive and participatory, engaging all relevant stakeholders. Our approach is original as it combines responsive, participatory action research methodology with a cluster randomized design, political economic analysis and empirical ethics, and is interdisciplinary in perspective.