The child and family living with complex health needs in the community: lived experiences and patterns of coping and relationship

Abstract

This study explored the perspectives of children whose complex health needs included respiratory technology dependence, and that of their parents, regarding community life and helpful patterns of coping and relationship. In-depth interviews were conducted with 7 children (3-18 yrs. old) and 8 parents. Survey data collected from 31 parents contributed to a convergent mixed methods design. Findings showed that children viewed themselves as normal, but experienced "a constricted life". Parents' active engagement in their child's life, as system navigators and advocates, was necessary to ensure their child's wellbeing. Key relational components included "authentic engaged presence", caring, competence, communication and collaboration. Effective coping patterns included reliable social support and both emotion-focused and problem-focused strategies. Contextual factors significantly affecting parental coping and relationships included family structure and child’s dependence on invasive respiratory technology (tracheostomy). Respite reported inadequate. Findings have practice and policy implications for health, respite and education systems, professionals and parents.