Caring for children and adults with lifelong care needs across the life course

Children with medical complexity often have substantial care needs requiring support and care across the life course. The impact of meeting care needs across the life course affects the physical, mental health and economic status of caregiver and families. In child health, little attention is paid to the experiences and needs of caregivers as children transition to adult care. The purpose of this pan-Canadian research study is to understand the experience of parents who are primary caregivers to children and adults with medical complexity and lifelong care needs.

In this mixed methods study 77 caregivers completed measures of parental stress and difficult events (Pediatric Inventory for Parents, PIP), family empowerment (Family Empowerment Scale, FES), and sense of competence (Parenting Sense of Competence-Revised, PSOC-R). Twenty-one parents took part in subsequent interviews to describe their experiences, challenges and needs.

Mean FES subscale scores indicated moderate empowerment. Mean PSOC-R subscale scores reflected moderate parenting competence. Mean PIP-Frequency subscale scores suggested that stressful situations occurred occasionally. Mean PIP-Difficulty scores suggested stressful situations were experienced as moderately distressing and burdensome. The following themes were identified from the qualitative interviews and provide context to the quantitative surveys: a) extreme caregiving demands evolve overtime, impacting all areas of caregivers' lives; b) health, social, and educational supports decline as children reach adulthood; c) caregivers must often find and fund their own care solutions, and d) caregivers identified a need for comprehensive wraparound supports.

While caregiving across the life course, caregivers grapple with significant challenges and lack of support to meet their child's care needs. This study informs the need for effective holistic supports and policy solutions for caregivers and families that address needs in health, social care and education.