Centering First Nations parents' voices: a community-directed pediatric rehabilitation needs assessment in Northern...

This study responds to concerns raised by Elders regarding urgent pediatric needs in Northern Cree communities. Guided by community priorities, the research aims to understand families' experiences with current services, needs and preferences for pediatric rehabilitation services.

Using a community-based participatory action research framework, we conducted sharing circles and individual interviews with parents of children with developmental difficulties. Fourteen children's stories were shared. Data were analyzed collaboratively using an iterative, inductive thematic approach.

Parents' insightful understanding of their children, along with their persistent advocacy and efforts to support their well-being, shaped narratives. Rather than emphasizing disabilities, parents highlighted strengths and resilience. Their testimonies underline the absence of clear direction and information on navigating the healthcare system, leading to confusion, delays, oversight, and unmet needs. This is exacerbated by limited community‑level resources. Hybrid care combining in-person and virtual solutions appeared promising to bridge service gaps. Cultural and community contexts remained central to family well‑being, providing opportunities for connection, support, and culturally meaningful care.

This study calls out the inequitable design of the healthcare system for First Nations families and underscores the need to shift to strength‑based, family‑centered, culturally grounded, and community‑led pediatric services.