Impact of "early Intervention" Parent Workshops on Outcomes for Caregivers of Children with Neurodisabilities: a Mixed-methods Study
Overview
Authors
Affiliations
Purpose: This study explored the feasibility, impact and parent experiences of ENVISAGE (ENabling VISions And Growing Expectations)-Families, a parent-researcher co-designed and co-led program for parents/caregivers raising children with early-onset neurodisabilities.
Methods: Parents/caregivers of a child with a neurodisability aged ≤6 years, recruited in Australia and Canada, participated in five weekly online workshops with other parents. Self-report measures were collected at baseline, immediately after, and 3 months post-ENVISAGE-Families; interviews were done following program completion. Quantitative data were analyzed with generalized estimating equations and qualitative data using interpretive description methodology.
Results: Sixty-five parents (86% mothers) were recruited and 60 (92%) completed the program. Strong evidence was found of effects on family empowerment and parent confidence (all ≤ 0.05 after the program and maintained at 3-month follow-up). The ENVISAGE-Families program was relevant to parents' needs for: information, connection, support, wellbeing, and preparing for the future. Participants experienced opportunities to reflect on and/or validate their perspectives of disability and development, and how these perspectives related to themselves, their children and family, and their service providers.
Conclusions: ENVISAGE was feasible and acceptable for parent/caregivers. The program inspired parents to think, feel and do things differently with their child, family and the people who work with them.Implications for rehabilitationENVISAGE (ENabling VISions And Growing Expectations)-Families is a co-designed, validated parent/researcher "early intervention and orientation" program for caregivers raising a child with neurodevelopmental disabilities (NDDs).ENVISAGE-Families empowered parents' strengths-based approaches to their child, family, disability, and parenting.ENVISAGE-Families increased caregivers' confidence in parenting children with NDD's and provided them tools to support connection, collaboration, and wellbeing.Raising children with NDD can have a profound impact on caregivers, who can benefit from strengths-based, future focused supports early in their parenting experience.
Bharuchi V, Rasheed M BMC Pediatr. 2024; 24(1):239.
PMID: 38575919 PMC: 10993442. DOI: 10.1186/s12887-024-04659-5.
Fakolade A, Stone C, Bobbette N Int J Environ Res Public Health. 2023; 20(22).
PMID: 37998303 PMC: 10671217. DOI: 10.3390/ijerph20227072.
Novak-Pavlic M, Rosenbaum P, Di Rezze B Int J Environ Res Public Health. 2023; 20(21).
PMID: 37947541 PMC: 10649410. DOI: 10.3390/ijerph20216983.
Roldan-Perez P, Miguel-Pagola M, Domenech-Garcia V, Bellosta-Lopez P, Buesa-Estellez A PLoS One. 2023; 18(9):e0291148.
PMID: 37682853 PMC: 10490905. DOI: 10.1371/journal.pone.0291148.
Longo E, Monteiro R, Hidalgo-Robles A, Paleg G, Shrader C, De Campos A Front Rehabil Sci. 2023; 4:1110552.
PMID: 36873816 PMC: 9978822. DOI: 10.3389/fresc.2023.1110552.