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

BACKGROUND: Parents are a resource that can be of considerable importance in supporting their adolescents' recovery and shared decision-making processes. However, involving both adolescents and their parents in treatment creates challenges. Understanding the roles of all decision stakeholders is vital to the implementation of shared decision-making and delivery of high-quality healthcare services. OBJECTIVE: The aim of this study is to explore parents' experiences with adolescents' participation in mental health treatment and how parents perceive being involved in decision-making processes. DESIGN: This was a qualitative study with a phenomenological, inductive design. Content analysis of data from qualitative interviews was performed. SETTING AND PARTICIPANTS: This study took place in a Norwegian public healthcare setting. Twelve parents of adolescents who received treatment for severe mental illness participated. RESULTS: Four themes were identified: (1) self-determined treatment, but within limits; (2) the essential roles of parents; (3) the need for information and support; and (4) the fight for individualized treatment and service coordination. CONCLUSION: User participation is vital in adolescent mental healthcare and parents play essential roles regarding the shared decision-making process. However, user participation and shared decision-making pose several dilemmas. Parental involvement in treatment decisions may be necessary when adolescents are mentally ill, but could simultaneously hinder those adolescents' empowerment and recovery. Cooperation among parents, adolescents and healthcare professionals can improve treatment engagement and adherence, but may be challenged by divergent interests. Health services should provide family-oriented services to utilize the potential of parents as a resource and minimize conflicting interests. PATIENT OR PUBLIC CONTRIBUTION: Two adolescent user representatives participated in designing the study.

User involvement in adolescents' mental healthcare: a systematic review.

More than one out of ten adolescents suffer from mental illness at any given time. Still, there is limited knowledge about their involvement in mental healthcare. Adolescents have the right to be involved in decisions affecting their healthcare, but limited research focuses on their engagement and decision-making. Therefore, this systematic review aims to explore the existing experiences with, the effectiveness of, and safety issues associated with user involvement for adolescents' mental healthcare at the individual and organizational level. A systematic literature review on user involvement in adolescents' mental healthcare was carried out. A protocol pre-determined the eligibility criteria and search strategies, and established guidelines were used for data extraction, critical appraisal, and reporting of results. Quantitative studies were analysed individually due to heterogeneity of the studies, while qualitative studies were analysed using thematic synthesis. A total of 31 studies were included in the review. The experiences with user involvement were reported in 24 studies with three themes at the individual level: unilateral clinician control versus collaborative relationship, capacity and support for active involvement, the right to be involved; and two themes at the organizational level: involvement outcomes relevant to adolescents' needs, conditions for optimal involvement. The effectiveness of user involvement was reported in seven studies documenting fragmented evidence related to different support structures to facilitate adolescents' involvement. The safety associated with user involvement was not reported in any studies, yet a few examples related to potential risks associated with involvement of adolescents in decision-making and as consultants were mentioned.

User participation and shared decision-making in adolescent mental healthcare: a qualitative study of healthcare professionals' perspectives.

BACKGROUND: Most mental health problems occur in adolescence. There is increasing recognition of user participation and shared decision-making in adolescents' mental healthcare. However, research in this field of clinical practice is still sparse. The objective of this study was to explore healthcare professionals' perspectives on user participation, and opportunities for shared decision-making in Child and Adolescent Mental Health Service (CAMHS) inpatient units. METHODS: Healthcare professionals at CAMHS inpatient units participated in three focus group interviews. Fifteen participants with experience with user participation and shared decision-making were recruited from five hospitals in Norway. RESULTS: Five themes emerged: (1) involvement before admission; (2) sufficient time to feel safe; (3) individualized therapy; (4) access to meetings where decisions are made; and (5) changing professionals' attitudes and practices. CONCLUSION: User participation and shared decision-making require changes in workplace culture, and routines that allow for individualized mental health services that are adapted to adolescents' needs. This calls for a flexible approach that challenges clinical pathways and short-stay hospital policies. The results of this study may inform further work on strengthening user participation and the implementation of shared decision-making.Trial registration Norwegian Regional Committees for Medical and Health Research Ethics, reference number 2017/1195.

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

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. CONCLUSIONS: 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.

User involvement in adolescents' mental healthcare: protocol for a systematic review.

INTRODUCTION: User involvement has become a growing importance in healthcare. The United Nations state that adolescents have a right to be heard, and user involvement in healthcare is a legal right in many countries. Some research provides an insight into the field of user involvement in somatic and mental healthcare for adults, but little is known about user involvement in adolescents' mental healthcare, and no overview of the existing research evidence exists. METHODS AND ANALYSIS: The aim of this systematic review is to provide an overview of existing research reporting on experiences with and the effectiveness and safety issues associated with user involvement for adolescents' mental healthcare at the individual and organisational level. A systematic literature search and assessment of published research in the field of user involvement in adolescents' mental healthcare will be carried out. Established guidelines will be used for data extraction (Cochrane Collaboration guidelines, Strengthening the Reporting of Observational studies in Epidemiology and Critical Appraisal Skills Programme (CASP)), critical appraisal (Cochrane Collaboration guidelines and Pragmatic-Explanatory Continuum Indicator Summary) and reporting of results (Preferred Reporting Items for Systematic reviews and Meta-Analyses, Consolidated Standards of Reporting Trials and CASP). Confidence in the research evidence will be assessed using the Grading of Recommendations Assessment, Development and Evaluation approach. Adolescents are included as coresearchers for the planning and carrying out of this systematic review. This systematic review will provide an overview of the existing research literature and thereby fill a knowledge gap. It may provide various stakeholders, including decision-makers, professionals, individuals and their families, with an overview of existing knowledge in an underexplored field of research. ETHICS AND DISSEMINATION: Ethics approval is not required for this systematic review as we are not collecting primary data. The results will be published in a peer-reviewed journal and at conference presentations and will be shared with stakeholder groups.