Families' Strategies for Navigating Care for Their Child With Cerebral Palsy: A Qualitative Study

Families of children with medical complexities, like cerebral palsy (CP), often interact with multiple service providers across healthcare, education, social services, and family support sectors. To navigate these services, families shoulder various responsibilities, such as managing appointments, understanding different service systems, and advocating for their child's needs. However, our understanding of how families navigate these services remains limited. Therefore, this study explores families' strategies for navigating services for their child with cerebral palsy.

Data were gathered through interviews with six families who each have a child diagnosed with CP aged between 8 and 12 years old. These interviews involved both children and parents and were conducted in three consecutive semi-structured sessions with each family. Additionally, observations were conducted during multidisciplinary coordination meetings held at the children's schools, involving parents and service providers.

To navigate services, parents applied strategies to (1) become experts on both their child's diagnosis, challenges, care needs and on the services available; (2) act as proactive participants in their child's care; and (3) manage day-to-day care. In doing so, families contributed to the provision of family-centred services according to their care needs.

Families make use of several different strategies to navigate the services. By applying these strategies, they effectively express their care needs and facilitate tailored services, thus contributing towards a family-centred approach. This highlights the importance of supporting the strategies used by families when collaborating with the services.

Families actively participated in shaping the study by engaging in a series of interviews, discussing topics important to them, and reviewing the information provided. This approach ensures that their experiences and needs are accurately captured and addressed. Additionally, families shared their thoughts on how services could be improved to better meet their care needs.