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

Introduction

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. Participants and Methods: 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.