Abstract
Background. Knowledge about the needs of parents with neurological disorders who take care of young children is limited. Purpose. The overall aim of this qualitative study was to explore the perceived unmet parent needs, current supports, and potential solutions to optimize supports of parents with neurological disorders in early childhood in a Canadian setting. Method. Focus groups and individual interviews with parents ( n = 8), spouses ( n = 5), rehabilitation clinicians ( n = 8), community partners ( n = 7), and researchers ( n = 7) were conducted with a total of 35 participants recruited using convenience sampling. Inductive iterative thematic analysis was performed. Findings. The participants identified the need for society to officially recognize parenting with disabilities, adjust public policies, increase the scope of public programs, consider child development and family well-being, and have barrier-free communities. Conclusion. Providing customized solutions that will adequately fill perceived service gaps is of utmost importance to address these families’ needs.
Funder
Office des personnes handicapées du Québec (OPHQ) & Réseau provincial de recherche en adaptation-réadaptation
Reference52 articles.
1. Online Focus Groups
2. Barriers and Solutions to Passing State Legislation to Protect the Rights of Parents With Disabilities: Lessons From Interviews With Advocates, Attorneys, and Legislators
3. Andrews D., Fong G., Hackam D., Li L., Lynam M., Mathews M., Strauss S. (2015). Guide to knowledge translation planning at CIHR: Integrated and end-of-grant approaches. The Canadian Institutes of Health Research (CIHR). Retrieved November 17 from https://cihr-irsc.gc.ca/e/documents/kt_lm_ktplan-en.pdf
4. Association québécoise des personnes de petite taille (AQPPT). (2021). Tous parents! Guide sur la parentalité en situation de handicap. Retrieved October 24 from https://www.aqppt.org/wp-content/uploads/2021/05/Guide-AQPPT-26-JAN.pdf