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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

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Published on: June 6, 2020

Exploring parent/caregiver perspectives post participation in WeCare programme for parents/caregivers post

Elena Hatzis¹, Anoo Bhopti², Helen Bourke-Taylor³

¹Department of Occupational Therapy, Monash University, Melbourne, Victoria, Australia.

BMJ Paediatrics Open

|October 22, 2025

Abstract

Background:

Parents of children with neurodevelopmental disability face considerable challenges during the time of receiving their child's diagnosis, resulting in risks to their health, well-being and occupational participation. WeCare programme is a group-based, peer-supported parent programme delivered online, purposefully designed to support parents during the time of diagnosis. WeCare programme focuses on improving family well-being, family quality of life and engagement in meaningful parent occupations. This study aimed to investigate the experiences of parents who participated in the programme.

Methods:

WeCare programme was delivered over 2 years by two occupational therapists and two parent peer-facilitators. A qualitative study design was employed using semistructured interviews with participants who completed the WeCare programme. Interviews were recorded via Zoom. Data was analysed using Braun and Clarke's six-step method of reflexive thematic analysis.

Findings:

Seven parents (five mothers and two fathers) participated. Four major themes were identified: A Group for Me; Clearing the Fog; Positive Changes; and Reflections on Content and Delivery. The majority of parents described common experiences after attending the WeCare programme, including feeling less isolated by belonging in a group of parents facing similar challenges; being prompted to consider self-care and their own well-being; feeling more confident in their understanding of their child's diagnosis and ability to navigate services; and appreciating the support of professional and peer facilitators. Implementation of well-being strategies was influenced by structural and personal factors, highlighting systemic barriers to support. Valuable feedback highlighted suggestions for future WeCare programme including the need for ongoing support after the programmes' conclusion and face-to-face sessions.

Conclusions:

Parents' experiences confirm that the WeCare programme provides timely and effective support during the early days of receiving a disability diagnosis, complementing existing services rather than replacing them. Programmes like WeCare can enhance family-centred practice and parental capacity, though broader structural and policy reforms are needed to address service gaps. Occupational therapists can enhance parent support through specialised programmes such as the WeCare programme, tailored to meet the unique needs of each family. Continued development and dissemination of WeCare is warranted to enhance equitable access and improve family outcomes.

Keywords:

Autism Caregivers Children Mothers Occupational therapy

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