Impact of “early intervention” parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study

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 p ≤ 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.

[1]  J. Ziviani,et al.  ENabling VISions and Growing Expectations (ENVISAGE): Parent reviewers' perspectives of a co-designed program to support parents raising a child with an early-onset neurodevelopmental disability. , 2021, Research in developmental disabilities.

[2]  S. Mahant,et al.  Health Outcomes of Parents of Children with Chronic Illness: A Systematic Review and Meta-Analysis. , 2019, The Journal of pediatrics.

[3]  Patricia L. Obst,et al.  Raising a child with a disability: a one-year qualitative investigation of parent distress and personal growth , 2019, Disability & Society.

[4]  P. Rosenbaum Diagnosis in developmental disability: a perennial challenge, and a proposed middle ground , 2019, Developmental Medicine & Child Neurology.

[5]  S. Logan,et al.  Healthy Parent Carers programme: development and feasibility of a novel group-based health-promotion intervention , 2018, BMC Public Health.

[6]  H. Bourke-Taylor,et al.  Mothers’ Experiences of a Women’s Health and Empowerment Program for Mothers of a Child with a Disability , 2018, Journal of autism and developmental disorders.

[7]  D G Altman,et al.  GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research , 2017, British Medical Journal.

[8]  R. Stewart,et al.  The effectiveness of Stepping Stones Triple P parenting support in parents of children with borderline to mild intellectual disability and psychosocial problems: a randomized controlled trial , 2014, BMC Medicine.

[9]  P. Rosenbaum,et al.  Measure of Processes of Care: a review of 20 years of research , 2014, Developmental medicine and child neurology.

[10]  J. Gorter,et al.  The 'F-words' in childhood disability: I swear this is how we should think! , 2012, Child: care, health and development.

[11]  K. Kuhlthau,et al.  Family-Centered Care: Current Applications and Future Directions in Pediatric Health Care , 2011, Maternal and Child Health Journal.

[12]  C. Dunst,et al.  Capacity-Building Family-Systems Intervention Practices , 2009 .

[13]  Maria E Fernandez,et al.  How we design feasibility studies. , 2009, American journal of preventive medicine.

[14]  P. Rosenbaum,et al.  The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders , 2009, Disability and rehabilitation.

[15]  U. Bronfenbrenner Ecology of the family as a context for human development: research perspectives , 1986 .

[16]  A. Sameroff The transactional model of development: How children and contexts shape each other. , 2009 .

[17]  Deborah W. Hamby,et al.  Meta-analysis of family-centered helpgiving practices research. , 2007, Mental retardation and developmental disabilities research reviews.