“Hanging on by a Thread”: The Lived Experience of Parents of Children with Medical Complexity

Abstract

Background: Families with children with medical complexity endure high levels of chronic and toxic stress, impacting the overall health and wellbeing of all family members and the system as a whole. The purpose of this study was to examine the lived experiences of parents/caregivers with children with medical complexity. Methods: The lived experiences of 15 parents of children with complex medical needs were explored using focus group discussions. Focus group discussions were recorded, transcribed, and analyzed using van Manen’s 6-step process for hermeneutic phenomenology. Aligned with the research questions, the analysis draws on van Manen’s four lived existential analytical categories. Results: Themes include: (1) lived body, the psychological and physiological effect; (2) lived time and space, the immediate impact on the there, now, and then; (3) lived relationships, social life and family relational effect; (4) risk factors; and (5) protective factors. Conclusion: Caregivers of children with medical complexity have a unique experience of trauma and resilience. This study will inform interdisciplinary medical providers about the mental health and resiliency experiences of this population to support more effective healthcare practices.

Keywords

• trauma
• resilience
• medical complexity
• parenting
• complex care