Coaching While Waiting for Autism Spectrum Disorder Assessment: Protocol of a Pilot Feasibility Study for a Randomized Controlled Trial on Occupational Performance Coaching and Service Navigation Support

Abstract

Background In Australia, the average time between a first concern of autism spectrum disorder (ASD) and diagnosis is over 2 years. After referral for assessment, families often wait 6-12 months before their appointment. This can be a time of uncertainty and stress for families. For some families, other forms of assistance are not accessible and thus timely intervention opportunities are missed. There is little evidence about how to provide the best support for children or caregivers while on assessment waiting lists. Objective The aim of this study is to determine whether use of a coaching intervention called Occupational Performance Coaching (OPC) combined with service navigation support is feasible for families waiting for ASD assessment, as a crucial first step in planning a randomized controlled trial. Methods A pilot and feasibility study will be conducted using recommended constructs and associated measures, which will be reported using CONSORT (Consolidated Standards or Reporting Trials) guidance. Participants will be child and caregiver dyads or triads, recruited within 4 months of their child (aged 1-7 years) being referred to one of two services for an ASD assessment in Victoria, Australia. A blinded randomization procedure will be used to allocate participants to one of three trial arms: (1) coaching and support intervention delivered face to face, (2) coaching and support intervention via videoconference, and (3) usual care. Descriptive statistics will be used to describe the sample characteristics of parents and children, inclusive of service access at baseline and follow up. Recruitment rates will be reported, and retention rates will be evaluated against a predicted rate of 70%-80% in each intervention arm. Goal attainment, using the Canadian Occupational Performance Measure, will indicate preliminary evidence for efficacy within the intervention arms, with an increase of 2 or more points on a 10-point performance and satisfaction scale considered clinically significant. Results The study was approved by The Royal Children’s Hospital Research Ethics and Governance Department in September 2018. As of October 2020, 16 families have been recruited to the study. Data analysis is ongoing and results are expected to be published in 2021. Conclusions Study findings will support planning for a future randomized controlled trial to assess the efficacy of OPC and service navigation support for caregivers of children awaiting ASD assessment. Trial Registration Australian New Zealand Clinical Trials Registry ACTRN12620000164998; www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=378793&isReview=true International Registered Report Identifier (IRRID) DERR1-10.2196/20011

Coaching While Waiting for Autism Spectrum Disorder Assessment: A Pilot Feasibility Study for a Randomized Controlled Trial on Occupational Performance Coaching and Service Navigation

“…Usual care consisted of existing service access outside of the assessment service to which the child was referred, and telephone access to a part-time assessment service coordinator as required. Participants in the intervention arms received 4 sessions of a manualised intervention, OPC, which has previously been described in detail (Bernie et al, 2021 ; Graham et al, 2020 ). In brief, OPC is an evidence-based, function-focused coaching approach, built upon principles of connection, sharing and structure.…”

“…Measures were mapped onto feasibility constructs as outlined in the study protocol (Bernie et al, 2021 ), which included acceptability, practicality, demand, adaptability, and preliminary efficacy. Demand was measured through recruitment, with an aim of between 18 and 24 participants, acceptability and progression to a future RCT via a retention goal of 70–80%, and a post-intervention questionnaire, and preliminary efficacy through functional goal attainment measured by the Canadian Occupational Performance Measure (COPM), 6th Edition (Law et al, 2017 ).…”

Adaptive innovations to provide services to children with developmental disabilities during the COVID‐19 pandemic

“…Coaching to identify key goals for each child was possible and service advice was able to be provided. 11 To improve access for children most in need of specialist services, a recent pilot study, conducted in five Victorian GP practices, found that integrated GP-paediatrician care, consisting of co-consults, case-based discussions and email and telephone support, upskilled GPs to be able to better identify those children who needed specialist support for developmental concerns versus those whose development was within normal limits. 10 Telehealth is also being increasingly used as a way of providing care in regional and remote Australia.…”

Occupational Performance Coaching With Parents to Promote Community Participation of Young Children With Developmental Disabilities: Protocol for a Feasibility and Pilot Randomized Control Trial

“…To our knowledge, this is the first study describing a RCT protocol of OPC with specific focus on primary outcome related to community participation. In past RCTs of OPC (39,41), the COPM has been commonly used to measure child performance and parents' satisfaction with individualized goals in the areas of self-care, productivity, and leisure. As goals could be varied across each family, we plan to prompt parents to set as many goals related to their child's community participation as possible, and singe out those goals for analysis in our pilot RCT.…”

“…Children in the OPC intervention group exhibited significantly increased participation-related goal performance with a large effect size, compared to children in the control group. Several RCT studies are being conducted (41), which will provide cumulative evidence for the effect of OPC on children's participation in different populations or countries.…”