Accessibility Tools
Objective: Whilst the benefits of shared decision-making (SDM) have been promoted across different health settings, its implementation is complex, particularly for children and young people with mental health difficulties. The aim of this scoping review was to identify and describe SDM approaches (tools, techniques, and technologies) used in child and youth mental health.
Method: Electronic databases and grey literature were searched. Papers were included if they satisfied these criteria: English language; described an SDM approach (tool, technique, or technology); included sufficient detail on the SDM approach for quality assessment; did not use only a questionnaire to provide feedback on SDM or related concepts (e.g., therapeutic alliance) without another SDM approach; child or adolescent population (up to 18 years); carers of children or adolescents; and mental health setting. Screening and data extraction were performed by two co-authors, and each included record was quality assessed against a set of essential ingredients of SDM identified by previous studies.
Results: Of the 8,153 initial results, 22 were eligible for final inclusion. These could be grouped into six approaches: therapeutic techniques, psychoeducational information, decision aids, action planning or goal setting, discussion prompts, and mobilizing patients to engage. The quality of approaches identified ranged from one to seven of the nine essential elements of SDM.
Conclusion: Evidence suggests that a range of approaches are being developed to support SDM in child and youth mental health. Rigorous research evaluating the effectiveness of these approaches is urgently needed, particularly from the perspective of children and young people.
Objective: Young people and parents want to be more active in treatment decisions. Using the Theoretical Domains Framework (TDF), which segments behaviour change into barriers and facilitators across fourteen domains, the aim of this study is to explore the barriers and facilitators to shared decision-making (SDM) from young people and their parents’ perspectives.
Method: The sample comprised nine young people who presented with internalising difficulties and ten parents of young people with internalising difficulties across two sites in England. Interviews were conducted, and transcripts were analysed using a deductive thematic analysis.
Results: Overall, 15 barriers to and facilitators for SDM in child and youth mental health were identified. Under capability, these included an awareness of SDM, forgetting discussions or not asking questions, clinician listening skills and communication skills. For opportunity, these included the availability of treatment options, availability of understandable resources, staff shortages, the environment being conducive to SDM, and if the school, or parents of young people, facilitated decisions. For motivation, these included whether SDM was thought to empower individuals, result in better treatment, or individuals making the ‘wrong’ decision, as well as whether individuals felt capable to be involved in treatment decision-making, whether young people lacked capacity, and whether they could make decisions due to enhanced emotional states.
Conclusions: Barriers and facilitators across capability, opportunity and motivation were identified. Interventions which target these barriers and facilitators may facilitate young people and their parents’ involvement in decision-making.
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.
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.
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.
The National Mental Health Consumer and Carer Forum and the National Primary Health Network Mental Health Lived Experience Engagement Network acknowledge the Traditional Custodians of the lands and waters on which we work and live on across Australia. We recognise their continuing connection to land, waters, culture and community. We pay our respects to Elders past and present.
“A lived experience recognises the effects of ongoing negative historical impacts and or specific events on the social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples. It encompasses the cultural, spiritual, physical, emotional and mental wellbeing of the individual, family or community.
“People with lived or living experience of suicide are those who have experienced suicidal thoughts, survived a suicide attempt, cared for someone through a suicidal crisis, been bereaved by suicide or having a loved one who has died by suicide, acknowledging that this experience is significantly different and takes into consideration Aboriginal and Torres Strait Islander peoples ways of understanding social and emotional wellbeing.” - Aboriginal and Torres Strait Islander Lived Experience Centre
We welcome Aboriginal and Torres Strait Islander people to this site and invite them to provide any feedback or items for inclusion.
We also recognise people with lived and living experience of mental ill-health and recovery and the experience of people who are carers, families, kin, or supporters.