P3B013: Meaning-making Among Parents of Children with Severe Neurological Impairment

Background: Children with severe neurologic impairment (SNI) have static or progressive central nervous system conditions that result in motor and cognitive impairment as well as medical complexity. Parents and family caregivers of children with SNI experience many stressors, including times when their child’s critical illness results in prolonged stays in the pediatric intensive care unit (PICU). This study aimed to examine meaning-making as a way parents integrate these experiences around the time of their child’s PICU admission.

Methods: This was an inductive qualitative analysis of data from a single-center study in the United States and followed COREQ guidelines for rigorous qualitative research. Eligible parents and family caregivers had a child with an SNI condition for >3 months admitted to the PICU for >24 hours with an expected length of stay >1 week. The study team conducted 1:1 semi-structured 60-minute interviews that queried parents regarding their psychosocial wellbeing around the time of their child’s PICU care. Audio-recordings were transcribed, deidentified, and data were analyzed using Dedoose software into themes by our research team that had expertise in pediatrics, palliative care, psychology, intensive care, and qualitative methods.

Results: Fifteen family caregivers of 15 children with SNI participated (Table 1). Children were a median of 8 years old (range 1-21); 80% (n=12) had congenital/genetic conditions; and 100% (n=15) were assisted by technology at home prior to PICU admission. Parent and family caregivers were a median age of 40 years old (range 29-56); 20% (n=3) self-identified as fathers, and 47% (n=7) as having a minority racial or ethnic background. Parents discussed ongoing meaning-making in the context of their PICU experiences. For participants, this occurred both in terms of primary themes which included personal comprehension and purpose as well as their understanding and actions with other people and the world around them. Within these themes, subthemes focused on 1) appreciation and acceptance of their/their child’s life; 2) adaptability and accountability as caregivers; 3) underscoring the value of all lives (including those with neurologic disabilities); and 4) learning their child’s medical needs and teaching others about their child and the fullness of their child’s life (Table 2).

Conclusion: This study suggests that aspects of meaning-making occur among parents and family caregivers, even amidst stressful PICU experiences. Finding ways to incorporate meaning-making as a part of PICU care may be an important area of support and continued intervention research among parent and family caregivers of children with SNI.