– We know that psychoeducational family involvement and other similar models have a documented effect in treatment of patients with psychotic disorders, on the same level as medicinal and cognitive treatment. Regardless, family involvement is often very lacking, Reidar Pedersen, professor and leader of the Centre for Medical Ethics (CME) at the University of Oslo, says.
– Systematic family involvement is, among other things, central to detecting deterioration in the patient's health, also in patients who avoid healthcare over time. It might also be cost effective to provide better support to relatives as informal caregivers, Pedersen says.
In the report "Helsehjelp til personer med alvorlig psykisk lidelse og voldsrisiko” (Health care for persons with serious mental disorders and risk of violence), The Norwegian Healthcare Investigation Board (Ukom) refers to findings from several studies done in the research project "Family involvement during severe mental health problems" at UiO. The report also refers to a study done by PhD-student Tore Hofstad et al. at the Centre for Medical Ethics. According to Ukom, research show well-documented effects of psychoeducational family involvement as a treatment method for patients with serious mental disorders. Regardless, patients are rarely offered this as part of their treatment.
– One of our studies, to which the report refers, indicates that less than five percent of patients receive psychoeducational family involvement as part of their treatment. Often other methods or tools for systematic family involvement are not used either. One can ask whether the health services meet the requirement for proper health care, when so few patients receive the recommended treatment, Pedersen says.
Through psycho-educational (knowledge based) family involvement, healthcare workers, the patient and relatives meet, and learn how they can communicate efficiently, contribute to the treatment, receive emotional support, and find common solutions to various challenges.
The Norwegian Healthcare Investigation Board (Ukom)
Ukom investigates serious incidents within the health and care services. The purpose is to improve the safety of patients, users, relatives, and healthcare workers. Anyone can report serious incidents or conditions that affect the patient's or user's safety to Ukom, by submitting a report. Ukom assesses all incidents reported to the commission. In the event of serious incidents or cases, Ukom conducts a detailed review of the incident.
In January 2023, Ukom presented the report "Helsehjelp til personer med alvorlig psykisk lidelse og voldsrisiko” (Health care for persons with serious mental disorders and risk of violence). The report is based on an investigation launched after the murders in Kongsberg in 2021, where the offender was sentenced to compulsory mental health care. In the report, Ukom has studied the health care the offender received in the years before the tragedy. Read the full report "Helsehjelp til personer med alvorlig psykisk lidelse og voldsrisiko” at ukom.no.
Source: The Norwegian Healthcare Investigation Board (Ukom)
Researchers at CME have created a tool to measure the degree of family involvement
In one of the studies referred to in the Ukom report, the researchers at CME have created a new tool for measuring to which extent national recommendations for family involvement are followed, called a "fidelity scale". The scales can be used to measure to which extent evidence-based interventions are used in clinical practice and in organizations, and whether the interventions are used in line with recommendations or not. Fidelity scales are particularly useful when looking at complex interventions, which require efforts at multiple levels and from many actors to be successfully implemented.
– By measuring and documenting the implementation of family involvement, we can say something more precise about the distance between practice and the recommendations, and where the potential for improvement is the greatest, Pedersen says.
Implementation of systematic family involvement requires that the health services arrange for this to be possible. For instance, healthcare workers must gain knowledge, skills, and awareness of systematic family involvement.
– In the "Family involvement during severe mental health problems”-project, we have developed a program for implementation and support, which has now been tested and evaluated thoroughly through a cluster randomized study, Pedersen says.
Uncertainty among healthcare workers about how confidentiality should be handled
According to the Ukom report, the regulations on the next of kin's right to information and involvement are not well enough adapted if the patient does not want to receive care or for their families to be involved in their treatment. Ukom believes this might explain the lack of family involvement in the Kongsberg case.
They refer to another study carried out in the "Family involvement during severe mental health problems”-project, which discusses ethical dilemmas with family involvement. The study shows that among healthcare workers there is often uncertainty about what the legislation says about confidentiality.
– Our study of what prevents and promotes systematic family involvement shows that the regulations on confidentiality can be difficult to understand and is sometimes interpreted too strictly. This can lead to relatives not receiving information, guidance, or support, that information the relatives have is not shared with healthcare workers, that the patient does not receive the correct treatment, or that societal responsibilities are not met, Pedersen says.
Relatives are an important resource in treatment of people with serious mental disorders. They are sources of valuable information about the patients’ health, and often know how the patients function in their everyday lives, also when the patients are no longer in contact with the health services.
Lack of family involvement in the Kongsberg case
– Having access to important information about the patient is crucial for the healthcare system to be able to make decisions about treatment for the patient, and to fulfill its role as a societal protector, Pedersen says.
– When key actors do not have access to important information, the consequences can sometimes be very dramatic. For instance, when the regional and the municipal health services, relatives, and possibly also the police, as in the Kongsberg case, do not exchange information well enough, Pedersen says.
According to Ukom, the relatives in the Kongsberg case had important information about the offender's health status, function level, and previous acts of violence. Due to a lack of conversations and cooperation with the relatives, the health services did not gain access to this information. This resulted in missing information about the patient’s health status when the health services assessed the need for treatment and the risk of violence. These assessments are also used to make decisions on the need for follow-up treatment and the use of compulsory mental health care.
– The Kongsberg case shows how important relatives and systematic family involvement is for patients with mental disorders, also when there is conflict and violence. If all contact with the relatives is removed in such situations, for instance through a ban on visiting, the patient is likely to relapse and the health services might miss it, unless compensatory measures are introduced at the same time as the ban on visiting, Pedersen says.
– The Kongsberg case is a tragic case, but there is a lot to learn from the case, and many good recommendations in the report. Also for patients with serious mental disorders without a risk of violence. Especially where they evade receiving health care, including systematic family involvement, he concludes.
Read more about the studies done at the Centre for Medical Ethics in the articles:
Hansson KM, Romøren M, Weimand B, Heiervang KS, Hestmark L, Landeweer EG, et al. The duty of confidentiality during family involvement: ethical challenges and possible solutions in the treatment of persons with psychotic disorders. BMC psychiatry. 2022;22(1):1-13.
Hansson KM, Romøren M, Pedersen R, Weimand B, Hestmark L, Norheim I, et al. Barriers and facilitators when implementing family involvement for persons with psychotic disorders in community mental health centres–a nested qualitative study. BMC Health Services Research. 2022;22(1):1-16.
Hestmark L, Heiervang KS, Pedersen R, Hansson KM, Ruud T, Romøren M. Family involvement practices for persons with psychotic disorders in community mental health centres–a cross-sectional fidelity-based study. BMC psychiatry. 2021;21(1):1-11.
Hofstad T, Rugkåsa J, Ose SO, Nyttingnes O, Kjus SHH, Husum TL. Service Characteristics and Geographical Variation in Compulsory Hospitalisation: An Exploratory Random Effects Within–Between Analysis of Norwegian Municipalities, 2015–2018. Frontiers in psychiatry. 2021:2099.