The acceptability, usability and comprehensibility of ENVISAGE: A program to empower parents of children newly diagnosed with a neurodisability

Abstract

Introduction: Parents raising children with a neurodisability experience major challenges. Despite substantial evidence attesting to poor parent physical and mental health, the preventability of these impacts has not been explored. ENabling VISions and Growing Expectations (ENVISAGE) is a parent, clinician, and researcher collaboration developed to integrate research evidence, clinical experience and parent expertise to support and empower parents to improve family outcomes as well as their child's. ENVISAGE comprises five workshops developed with parents, for parents, based on best practice in childhood disability. The aim of this study was to explore the comprehensibility, acceptability, and usability of ENVISAGE for caregivers of children with a neurodisability and refine content and delivery based on caregiver feedback. Patients and Methods: This mixed methods study included parents of children with a neurodisability (>12mo post-diagnosis). In phase one, parents reviewed ENVISAGE workshop materials and completed surveys. In phase two, parents participated in interviews and a focus group. Results: Five parents completed phases one and two. More than 80% of parents reported the ENVISAGE workshops were understandable, relevant, and meaningful to their family. Themes from qualitative data revealed ENVISAGE was empowering; facilitated a change in focus from disability to abilities; and provided families with tools to connect, communicate and collaborate. Recommendations regarding format and media support was also discussed. Conclusion: ENVISAGE successfully addresses the key issues and concerns reported by parents at the time of diagnosis. Refinement of workshop materials based on parent feedback will improve the accessibility of the program to all families.L6280041032019-06-13 <br />