A Constricted Life: Growing up With Complex Health Needs That Include Respiratory Technology Dependence

Abstract

PURPOSE: This study examined the lived experiences of children who were respiratory technology dependent, and the patterns of coping and relationship that they found helpful. METHOD(S): In-depth interviews were conducted with 7 children (aged 3-18 yrs.); transcripts were analyzed for recurring themes. RESULT(S): Children viewed themselves as normal and expected to be treated that way. They flourished in inclusive schools, and valued a participatory role in their health care management. Although aware of their need for respiratory technology, they described it as constricting, physically and socially. Encounters with social isolation and marginalization were common; children had to come to terms with their disability and learn to deal with others' responses. Helpful coping patterns: being actively engaged in living, problem-solving, accessing social support, exercising personal assertiveness and <> to others. Passive-avoidance was associated with deleterious outcomes. The family was the child's first social group, and parents' active engagement and system navigation skills were necessary to success. Parental divorce was experienced as overwhelming. Supportive relationships were consistently characterized by an <> and 4 core elements: caring, collaboration, communication and competence. CONCLUSION(S): Respiratory technology's limitations impinge upon the lives of its young users, interfering with social development and fostering passivity and dependence. The child's tasks include adjusting to disability and moving into active and assertive engagement at school, at home and in relation to health and respite service providers. Reliable social support networks, inclusive schools, engaged and navigation-savvy parents, health care, respite, and other professionals are important to their success.