A Mobile App to Support Parents Making Child Mental Health Decisions: Protocol for a Feasibility Cluster Randomized Controlled Trial

Abstract

Background Shared decision making (SDM) is recognized as a person-centered approach to improving health care quality and outcomes. Few digital interventions to improve SDM have been tested in child and adolescent mental health (CAMH) settings. One such intervention is Power Up, a mobile phone app for young people (YP), which has shown some evidence of promise that YP who received Power Up reported greater levels of SDM. However, even though parents play a critical role in CAMH care and treatment, they often feel excluded from services. Objective This protocol is for a pilot trial to determine the feasibility of a large-scale randomized trial to develop and evaluate a Web app called Power Up for Parents (PUfP) to support parents and promote involvement in CAMH decisions. Methods A 2-stage process, consisting of the development stage and pilot-testing stage of the initial PUfP prototype, will be conducted. At the development stage, a qualitative study with parents and clinicians will be conducted. The interviews will aim to capture the experience of making CAMH decisions, preferences for involvement in SDM, and determine situations within which PUfP can be useful. At the pilot-testing stage, up to 90 parents and their clinicians will be invited to participate in the testing of the prototype. Parents will be randomly allocated to receive the intervention or be part of the control group. This study design will allow us to assess the acceptability and usefulness of PUfP in addition to examining the feasibility of a prospective randomized trial. Clinicians’ perceptions of the prototype and how it has influenced parents’ involvement in SDM will also be examined. Results Recruitment began in January 2019 and is scheduled to last for 10 months. Interviews and baseline data collection are currently in progress. To date, 11 CAMH sites have been recruited to take part in the study. It is anticipated that data collection will be completed by October 2019. Conclusions The lack of parents’ involvement in CAMH care and treatment can lead to higher rates of dropout from care and lower adherence to therapeutic interventions. There are significant benefits to be gained globally if digital SDM interventions are adopted by parents and shown to be successful in CAMH settings. Trial Registration ISRCTN Registry ISRCTN39238984; http://www.isrctn.com/ISRCTN39238984 International Registered Report Identifier (IRRID) DERR1-10.2196/14571

An Affective-Appraisal Approach for Parental Shared Decision Making in Children and Young People's Mental Health Settings: A Qualitative Study

“…Parents were recruited from England in two strands: (1) as part of a feasibility and acceptability trial within the National Health Services ( 45 ), and (2) through social media platforms or in-person advertising. Parents were eligible if they (1) had at least one child or young person (0–24 years) with a mental health problem, (2) were over the age of 18, (3) had no known diagnosed mental health problems and (4) had the ability to speak and understand English.…”

A Caregiver Digital Intervention to Support Shared Decision Making in Child and Adolescent Mental Health Services: Development Process and Stakeholder Involvement Analysis

“…In keeping with the MRC framework, the intervention then entered the pilot and feasibility phase for testing the intervention, as discussed in the study protocol [ 56 ]. Preliminary results of the feasibility study [ 57 ] indicated that the intervention itself is generally acceptable by parents, carers, and health care professionals.…”

Feasibility and Acceptability of a Digital Intervention to Support Shared Decision-making in Children’s and Young People’s Mental Health: Mixed Methods Pilot Randomized Controlled Trial

“…The development and evidence base for the PUfP prototype are described and outlined in more detail in the study protocol [ 17 ]. PUfP is a decision support intervention with 5 key features (ie, decisions, goals, journey, support, and resources).…”

“…These consisted of demographic details (gender, ethnicity, first language, relationship to child, and child’s age), participation rates (completion of consent, pretest and posttest measures, and intervention use), SDM measures (the Control Preferences Scale for Pediatrics [ 31 ], the Pediatric Shared Decision-Making Questionnaire (modified) [ 32 ], and the Decisional Conflict Scale [DCS] [ 33 ]), experience of service (the Experience of Service Questionnaire [ESQ] [ 34 ]), usability and acceptance (the Poststudy Usability Questionnaire [ 35 ]), and an anxiety measure (the Spielberger State Anxiety Inventory Form for Adults [ 36 ]). Further details on the outcome measures are presented in the study protocol [ 17 ]. Depending on which group the participants were recruited into (ie, IG1, IG2, or control), they received help to access the app and were given a guided tour.…”

“…In response to this, an evidence-based, theoretically informed interactive web-based app was designed and developed to support SDM in universal CYPMH services [ 17 ]. The core content and aims of the intervention are based on an earlier intervention named Power Up, an intervention designed to promote SDM among young people accessing mental health services [ 18 , 19 ].…”