Research within the family domain will occur in collaboration with, and direct application to the needs of, families raising a child with additional care needs due to childhood onset impairment. Addressing the crucial and complex role of parents, our research involves multiple methods and varied designs. This work addresses issues of parental mental and general health; service navigation challenges affecting families; and empowerment of families to contribute to their child’s health and wellbeing, supported by informed professionals. Our research informs ways to improve the lifetime health and education service system that surrounds families and the child, adolescent, and adult with impairments.

Parents raising a child with a long-term neuro-disability experience major challenges. There is substantial clinical and epidemiological evidence of the impact of this experience on parents’ physical and mental health. These impacts create personal and family-related stresses on families, which affect family functioning and wellbeing and create challenges for community services. This Australian-Canadian collaboration aims to wish to empower families by introducing five sets of concepts: (i) an interconnected approach to health based on ICF ideas and our ‘F-words’ adaptation (function, family, fun, function, fitness and future); (ii) the primacy of child and family development as a key approach to family life; (iii) an appreciation of the challenges and joys of parenting in the context of a child’s disability; (iv) strategies to balance caregiving with self-care; and (v) skills for connection communication, and collaboration.

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