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

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 c...

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Bibliographic Details
Published in:Children (Basel) 2024-10, Vol.11 (10), p.1258
Main Authors: Holmes, Courtney, Zeleke, Waganesh, Sampath, Shruti, Kimbrough, Tiffany
Format: Article
Language:English
Subjects:
Analysis
Anxiety
Caregivers
Children & youth
Chronic illnesses
complex care
Complex patients
Data collection
Domestic relations
Families & family life
Family
Focus groups
Health care expenditures
Hospitals
medical complexity
Medical research
Mental depression
Mental health
Pandemics
parenting
Parents & parenting
Pediatrics
Phenomenology
Post traumatic stress disorder
Qualitative research
Quality of life
Research methodology
resilience
Social isolation
Social networks
trauma
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Summary: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. 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. 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. 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.
ISSN:2227-9067
2227-9067
DOI:10.3390/children11101258