I’m not a diagnosis: Adolescents’ perspectives on user participation and shared decision-making in mental healthcare

Abstract

Background: Adolescents have the right to be involved in decisions affecting their healthcare. More knowledge is needed to provide quality healthcare services that is both suitable for adolescents and in line with policy. Shared decision-making has the potential to combine user participation and evidence-based treatment. Research and governmental policies emphasize shared decision-making as key for high quality mental healthcare services. Objective: To explore adolescents' experiences with user participation and shared decision-making in mental healthcare inpatient units. Method: We carried out ten in-depth interviews with adolescents (16-18 years old) in this qualitative study. The participants were admitted to four mental healthcare inpatient clinics in Norway. Transcribed interviews were subjected to qualitative content analysis. Results: Five themes were identified, representing the adolescents' view of gaining trust, getting help, being understood, being diagnosed and labeled, being pushed, and making a customized treatment plan. Psychoeducational information, mutual trust, and a therapeutic relationship between patients and therapists were considered prerequisites for shared decision-making. For adolescents to be labeled with a diagnosis or forced into a treatment regimen that they did not initiate or control tended to elicit strong resistance. User involvement at admission, participation in the treatment plan, individualized treatment, and collaboration among healthcare professionals were emphasized. Conclusion: Routines for participation and involvement of adolescents prior to inpatient admission is recommended. Shared decision-making has the potential to increase adolescents' engagement and reduce the incidence of involuntary treatment and re-admission to inpatient clinics. In this study, shared decision-making is linked to empowerment and less to standardized decision tools. To be labeled and dominated by healthcare professionals can be a barrier to adolescents' participation in treatment. We suggest placing less emphasis on diagnoses and more on individualized treatment.

Parents' perspectives on user participation and shared decision‐making in adolescents' inpatient mental healthcare

“…Previous studies have found a need for individualized and customized treatment and a link between user participation and adolescents' sense of empowerment 6,15 . Adolescents with serious mental illness face challenges in the continuity of care and transition as they move between care settings 34 .…”

“…However, the involvement of parents in adolescents' treatment is not straightforward. The parents may have played a role in the origin of the adolescents' mental problems, and adolescents emphasize that they should control the parents' involvement 6 . Healthcare professionals acknowledge that they sometimes must accept that the adolescents refuse to involve their parents to establish a treatment alliance 5 .…”

“…It can be considered as a limitation that the study did not include the perspectives of the adolescents themselves. We have conducted a separate study on adolescents' perspectives 6 …”

“…Therapists face the challenging task of involving adolescents and parents with competing and divergent perspectives about treatment, thus risking the therapeutic alliance with the adolescents if they do not agree with their perspective 5 . The adolescents' sense of autonomy and relationship with the therapist during hospital admission is crucial for participation in treatment 6 …”

“…5 The adolescents' sense of autonomy and relationship with the therapist during hospital admission is crucial for participation in treatment. 6 User participation addresses patients' involvement in their treatment, including their influence in decision-making. 7 Shared decision-making is 'a process in which clinicians and patients work together to select tests, treatments, the management or support packages, based on clinical evidence and the patient's informed preferences'.…”