“Hanging on by a Thread”: The Lived Experience of Parents of Children with Medical Complexity
Department of Rehabilitation Counseling, Virginia Commonwealth University, Richmond (with Children's Hospital of Richmond at VCU)
How they used Delve
Rehabilitation counseling researchers at Virginia Commonwealth University used Delve to run a three-coder hermeneutic phenomenological analysis of five focus groups with 15 parents of children with medical complexity, developing 39 codes under six categories and reconciling their definitions across four team meetings.
“Once the focus group discussions had been transcribed and uploaded to the “Delve, a cloud-based CAQDAS tool for coding in qualitative research [38] for coding and analysis, three individuals, including the graduate assistant, principal investigator, and faculty collaborator, thoroughly read and reread the transcripts. [...] These sections were labeled with codes and subsequently combined into concepts using the Delve software [38].”
- Field
- Rehabilitation counseling and caregiver mental health; trauma and resilience among parents of children with medical complexity
- Data
- Five focus groups of 45-60 minutes on Zoom with 3-4 members each, totalling 15 parents of children with medical complexity, recruited from the Complex Care Clinic at Children's Hospital of Richmond and a community non-profit between October 2023 and January 2024
- Approach
- van Manen's 6-step hermeneutic interpretive phenomenology, drawing on the four lived existential categories; each of three coders read transcripts independently and highlighted and labelled sections, codes were combined into concepts in Delve, the principal investigator and a faculty collaborator separately developed 39 codes under six categories and held four meetings to reconcile definitions, and the third coder then compared notes before a unified list of concepts and definitions was agreed
- Data types
- Focus groups
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.
Citation
Courtney M. Holmes, Waganesh A. Zeleke, Shruti Sampath, Tiffany Kimbrough (2024). “Hanging on by a Thread”: The Lived Experience of Parents of Children with Medical Complexity. Children. https://doi.org/10.3390/children11101258