Building parent/caregiver confidence and re-engaging in parent occupations: WeCare programme for parents/caregivers post developmental disability diagnosis.

Résumé

BACKGROUND: Parents of children newly diagnosed with a developmental disability may experience stress, with no time for their personal care and well-being. WeCare is an online group programme, co-designed to support parents/caregivers around the time of diagnosis. It focuses on increasing parent/caregiver knowledge and confidence, highlighting family quality of life and steering parents to re-engage in meaningful parent occupations. This study aimed to evaluate WeCare programme outcomes around improved understanding of diagnosis, of parent occupations (time-use), well-being and participant rating of professional and peer-facilitated support.METHODS: A multiple single-case AB design with pre-post measurement at limited time points was used. Parents of children with a recent developmental disability diagnosis participated in WeCare. Perceived well-being data were collected using validated measures, a demographic questionnaire and a rating scale at the start of the programme. Data were analysed using SPSS for descriptive analyses, post survey questionnaire results and paired sample t-tests.RESULTS: Among participants (n=47, missing data), 30 of 41 reported mild to extremely severe stress, 25 of 42 reported mild to extremely severe depression, and 18 of 36 reported moderate to extremely severe anxiety. Poor sleep quality was reported by 21 of 45 participants. Caregiving dominated time use, with limited engagement in leisure occupations.Post-programme feedback highlighted increased understanding of the diagnosis, valued peer support and helpful resources.CONCLUSION: This study provides preliminary evidence, highlighting the critical role of capacity-building and structured programmes, like WeCare, in empowering parents and caregivers around the time of diagnosis. The programme was highly rated by participants, with peer facilitators seen as particularly valuable. Parents reported increased understanding of their child's diagnosis, greater awareness of resources and strong engagement with the parent occupation categories, showing promise in enhancing caregiver outcomes around the time of diagnosis that may be feasible for wider implementation.