Making the Best of Things: Raising a Child With Complex Health Needs That Include Respiratory Technology Dependence

Abstract

PURPOSE: This study examined parents' lived experiences raising a child with complex health needs that included respiratory dependence, and the patterns of coping and relationship that they found helpful. METHODS: A mixed-methods convergent design was used; data was gathered through in-depth interviews with 8 parents (5 women, 3 men), and through surveys completed by 31 parents (21 women, 10 men). Transcripts were analyzed for recurring themes, and findings were then compared with the survey results to identify areas of convergence and divergence. RESULTS: Living with the unknown, social isolation and loneliness were commonly reported stressors. Acquiring skills in system navigation, advocacy and case management were necessary in addition to specialized caregiving. Effective coping required access to reliable social support and employment of both problem-focused and emotion-regulation strategies. Parents' descriptions of helpful relationships consistently featured <> and 4 core elements: caring, communication, collaboration and competence. A strong positive relationship existed between parents' coping and their perceptions of their relationship with the child's health care provider (hcp); family structure and presence of tracheostomy were significant contextual factors. Parents felt disempowered in hospital, particularly in the Emergency Department; however, encounters with the Respirology Consultation Service were identified as highly facilitative. Scarcity of resources and respite were top concerns. CONCLUSIONS: Parenting these children involved organization, persistent multisystem navigation, advocacy and engagement, and a strong support network. Single working parents were highly vulnerable to social isolation and becoming overwhelmed; unreliable respite services compounded this. The parent-to-provider connection was the key point in each system. Respite services were essential to enabling parental coping; their unreliability was a pervasive problem in urgent need of attention.