Shared Decision Making With Young People at Ultra High Risk of Psychotic Disorder

Abstract

Introduction: While the majority of young people who meet the criteria for being considered at increased risk of psychosis do not go on to develop a psychotic disorder, young people are currently being identified and treated in early intervention services. Ethical concerns have been raised concerning the decision about whether or not to provide treatment, and if so, what type of treatment. This study sought to support young people themselves to make these decisions with support from their clinician through a shared decision-making approach, facilitated by an online decision aid.Methods: This project used the International Patient Decision Aid Standards (IPDAS) to guide the development and piloting of an online decision aid across two phases: (1) qualitative, semi-structured focus groups with young people who were past clients and clinicians from an early psychosis service; and (2) pilot testing of the decision aid with clinicians and young people who were current clients to finalize the development.Results: Issues discussed by clinicians in the focus group were grouped into three main areas: (1) engagement phase; (2) assessment and priorities for treatment; and (3) initial and ongoing decision making. Clients focused on the context in which the decisions were made, including as they experienced initial feelings of resistance, and then acceptance of efforts made to describe and treat their mental health challenges. Clients highlighted the need for collaboration between themselves and their clinician, and the need to be equipped with the knowledge and tools to take care of themselves. These focus group data were used to refine the online decision aid. Pilot testing revealed that while it was overall useful and relevant, important limitations were noted by both clients and clinicians.Discussion: The use of a decision aid to facilitate shared decision making (SDM) in this area is feasible and has utility for both clients and clinicians. Use of such a tool can help to address the need to uphold the rights of young people as decision makers about their own care. Future efforts should embed decision aids within complex SDM interventions, and research to understand issues relating to implementation of these interventions.

A feasibility and pilot trial of the Brief Educational Guide for Individuals in Need (BEGIN): Psychoeducation for individuals at risk for psychosis.

“…In addition, a strong therapeutic alliance emerged as a theme that contributed to participants’ satisfaction with BEGIN. In a separate study evaluating a shared decision-making model, CHR individuals similarly identified collaboration with their therapist as critical to their treatment decisions and engagement (Simmons et al, 2021).…”

Experiencing (Shared) Decision Making: Results from a Qualitative Study of People with Mental Illness and Their Family Members

“…The existing knowledge gap between healthcare experts (with academic education and experience as a treatment provider) compared to experts from experience (as an individual affected by mental illness or a family member of affected individuals) should therefore be reduced [ 26 , 50 ]. This could be achieved, for example, by providing adapted and evidence-based health information materials, online portals, and decision aids [ 51 , 52 , 53 ]. However, increased knowledge about relevant health topics alone is not enough; it must be accompanied by interventions which positively influence attitudes about SDM for all stakeholders and aim to balance power in the treatment decision process [ 32 , 54 ].…”

Personal preferences for treatment and care during and after a First Episode Psychosis: A qualitative study

“…This finding corroborates a survey among doctors treating people with FEP within the hospital setting, which showed there was no standardized way of providing psychoeducation, and only one‐third utilized supplement methods such as flyers, websites, or videos (Belkin et al, 2021). Involving persons right from the start in the treatment strategy may help to address this lack of information, which in return might lead to better outcomes (Guinaudie et al, 2020; Simmons et al, 2021). Using web‐based tools to educate individuals as soon as possible will help them to make well‐informed shared decisions as early in the treatment as possible which might aid the process of recovery (van der Krieke et al, 2013).…”

“…Research has shown that a person's consent to engage in a collaboratively chosen treatment strategy predicts both treatment adherence and better long‐term outcomes (Guinaudie et al, 2020; Simmons et al, 2021). Both individuals with lived psychoses and clinicians bring different, but equally important, knowledge to the decision‐making process (Fiorillo et al, 2020).…”