2024/01/10 by Romøren, Maria, Hansson, Kristiane M., Heiervang, Kristin S. +1
#Medicine and Health Sciences #baseline data #family involvement #health registry #implementation #next-of-kin #psychosis #qualitative
paper · doi:10.17605/osf.io/gvzjm
Relatives of people with serious mental illness provide important informal care in both specialist and municipal health services. They often have detailed knowledge of the patient, hold a number of important roles and can be decisive in the patient's recovery. Systematic family interventions have demonstrated positive patient outcomes concerning readmissions, medication and social function. Family involvement has also been found highly significant for the relatives themselves, and systematic family involvement is now recommended as first-line treatment in psychotic disorders throughout the western world. Despite recommendations, strong political guidance and repeated attempts to increase the use of systematic family involvement in psychosis treatment, implementation is still inadequate. In this postdoctoral study, we will use a significant amount of existing self-reported quantitative and qualitative data from 249 relatives to gain knowledge about relatives of people with psychotic disorders, their quality of life, challenges and coping, support and involvement, use of health and welfare services, as well as experiences of participating in systematic family involvement. We hypothesise that this group of relatives experience the relative role as challenging leading to reduced quality of life, that relatives are not given sufficient opportunities for involvement and support, that they make use of health and welfare services due to the relative role, and that there is great variation in perceived burden and received help for different groups of relatives - without the perceived burden and received help necessarily matching. Results from this study can contribute to this group of relatives getting better support and guidance, thus contribute as a resource without incurring an excessive burden. The study stems from the Norwegian Research Council-funded IFIP-project: Implementation of guidelines on family involvement for persons with psychotic disorders in community mental health centres (CMHC) (NOK 15 million, 2017-2022, ClinicalTrials NCT03869177). The IFIP-study has a participatory action research design, where research and implementation have been driven forward through continuous interaction with the users in all phases. User involvement will continue through the project's reference group.