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The collaboration with family members provided the relatives with a greater understanding of psychotic disorders and the patients' situation and difficulties.

Systematic family involvement is important in the treatment of patients with psychotic disorders

Researchers found that systematic family involvement led to increased knowledge and mutual understanding within the family.

Published

“Systematic family involvement, combined with medical treatment and individual therapy, is recommended in national guidelines for assessment, treatment, and follow-up of persons with psychotic disorders,” researcher Kristiane Myckland Hansson says. 

Together with Professor Reidar Pedersen and colleagues at the Center for Medical Ethics (SME) at the University of Oslo, she has studied the significance of systematic family involvement for patients with psychotic disorders.

The patients' own experiences

Previous research shows that systematic family involvement has great effect in the treatment of people with psychotic disorders. 

At the same time, there have been few qualitative studies of the patients' own experiences with this type of treatment.

“In the study we looked at how patients with psychotic disorders experienced systematic family involvement, and what significance this involvement had to them,” Myckland Hansson says.

What are psychotic disorders?

Psychotic disorders are severe mental disorders, which can have a major impact on the lives of the patients and their relatives.

There are different forms and degrees of psychosis. Patients with psychotic disorders can hear voices or have sensory experiences that others around them cannot see, hear, or feel. This can be frightening, confusing, or upsetting to the patients. Psychotic disorders that persist over time can cause patients to function less well socially and can in turn lead to reduced quality of life.

For the patients' relatives, psychotic disorders can be experienced as a burden. It can lead to increased stress, disturbances of domestic life, and poor communication, especially if the family does not receive information and support.

(Source: Helsenorge)

Provided a shared understanding within the family

In the study, the researchers interviewed 13 individuals with psychotic disorders who had participated in basic family involvement or family psychoeducation (FPE). 

FPE is an evidence-based treatment where patients and relatives gain knowledge about the disease and its treatment, learn how to communicate better and contribute to the treatment, receive emotional support, and get the opportunity to find joint solutions to various challenges.

Researcher Kristiane Myckland Hansson believes that systematic family involvement should be an integrated part of the treatment provided to all newly diagnosed patients with psychotic disorders.

“The patients we interviewed consistently told of positive experiences with systematic family involvement, and several pointed out that they wished they could have involved their families earlier in the course of the illness,” Myckland Hansson says.

She adds that cooperation with the relatives led to increased knowledge and common understanding within the family. The family members got a better understanding of psychotic disorders, and of the patients' situation and challenges. 

Could prevent relapse

At the same time, the patients gained an increased understanding of the relatives' experiences and roles.

“The increased knowledge, shared experiences, and common understanding led to better communication, decreased stress levels, and a more caring family situation," Myckland Hansson says.  

The patients felt that they were better able to manage their illness and life situation. Furthermore, the relatives were able to contribute to a greater extent with practical and emotional support.

“Several of the patients we interviewed believed that systematic family involvement helped to prevent relapse this way,” she says. 

Healthcare personnel created safe spaces

The study shows how the clinicians who led the systematic family involvement played a crucial role in facilitating communication and cooperation between the patients and their relatives.

The clinician was an important source of information and knowledge about the patients' disorder, treatment, and situation.

“It was important for both the patients and their relatives that healthcare personnel created safe spaces where they could share their experiences,” Myckland Hansson says.

Early intervention in treatment

Introducing systematic family involvement requires that clinicians receive training on how best to incorporate it as part of the treatment.

Several patients believed that systematic family involvement should be offered early in the treatment course. This way, the relatives could contribute to the treatment and gain understanding of the situation from the beginning.

"Establishing this collaboration, particularly for younger patients early in the course of the illness, is particularly important to prevent challenges later on," Myckland Hansson says. 

Challenging first phase

Some of the patients said that the time before, and the first phase of the systematic family involvement could be challenging.

“Some felt vulnerable because they lacked sufficient information about what the treatment entailed and what information would be shared about them. Others did not want to be a burden to their families," Myckland Hansson says. 

However, she explains that these assumptions were debunked once they started the collaboration with family members. The patients experienced that they had control over what information was shared about them, and saw how important the cooperation was for their families. 

Psychotic disorders can vary in severity among patients. There was thus a need for the systematic family involvement to be adapted to the patients' individual needs.

Should be integrated into the treatment options

“This part of the study gives us in-depth insight into possible factors and processes that lead to positive effects gained by systematic family involvement – and supports research that shows that systematic family involvement is significant for patients, next-of-kin and for the health care services," Myckland Hansson says. 

She believes that systematic family involvement should be an integral part of the treatment offered to all newly affected patients with psychotic disorders.

About the study

The study is part of the research and improvement project Family involvement during severe mental health problems.

The main aim of the project is to improve cooperation between the next of kin, the patient, and the healthcare system, and thus improve the psychosocial health of patients and their families, as well as the quality of the services.

The study was carried out from 2017-2023 and included 15 treatment units.

Reference:

Kristiane M. Hansson et.al.:  ‘The most important thing is that those closest to you, understand you’: a nested qualitative study of persons with psychotic disorders’ experiences with family involvement. Front. Psychiatry, 2023.  Doi.org/10.3389/fpsyt.2023.1138394

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