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Design and Participants: This qualitative study, at a single academic pediatric center with a 32-bed quaternary PICU serving a large US geographical region, examined parent experiences around the time of their child’s PICU care to explore ways parents make meaning in relation to these stressors. One-to-one semi-structured interviews queried parents’ psychosocial well-being around their child’s PICU care. Eligible participants had a child with an SNI condition for more than 3 months admitted to the PICU for more than 24 hours with an expected length of stay more than 1 week. The analysis team (including palliative care, psychology, critical care, and qualitative methodology experts) thematically analyzed transcripts until reaching consensus and code saturation. Coded data were then broken into themes and iteratively analyzed using existing meaning-making conceptual models to structure data interpretation.
Results: Participants included 15 family caregivers (median age=39 yrs [IQR=36-43]; 20% self-identified as fathers and 47% as racial minorities) of 15 children (median=8 yrs [IQR=4-12] and 80% with congenital/genetic conditions). Meaning-making domains were: comprehension, a person’s understanding of who they are, what the world is like, and how they fit into it; and purpose, a person’s discernment of, commitment to, and engagement in their personally meaningful goals. Within each domain were themes of understanding of other people and the world around them; subthemes focused on appreciation/acceptance, adaptability/accountability, valuing all lives, and learning/teaching about their child.
Commentary: Sir Francis Peabody wrote, “One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient.”3 This study reprises this important concept. Can meaning-making help mitigate stressors of having a child with SNI in the PICU? If so, how can caregivers implement this strategy? The study’s limitations make the findings challenging to generalize: it was conducted at a single institution, after discharge, with only English-speaking participants, who were predominantly women and whose children’s SNI were largely associated with congenital/genetic conditions. Still, in analyzing caregivers’ responses, they echo how we all stand to benefit if we recognize the humanity of patients and the expertise of courageous caregivers.4-6
Bottom Line: Further research is needed on how meaning-making interventions can inform comprehension and purpose for caregivers of children with SNI in the PICU.
Reviewer: Sara Taub, MD MBe, Oregon Health & Science University, Portland, OR
References:
1. Berry JG, Poduri A, Bonkowsky JL, et al. Trends in resource utilization by children with neurological impairment in the United States inpatient health care system: a repeat cross-sectional study. PLoS Med. 2012;9(1):e1001158.
2. Moreau JF, Fink EL, Hartman ME, et al. Hospitalizations of children with neurologic disorders in the United States. Pediatr Crit Care Med. 2013;14(8):801-810.
3. Peabody FW. The care of the patient. JAMA. 1927;88(12):877-882.
4. Weaver MS, Neumann ML, Lord B, Wiener L, Lee J, Hinds PS. Honoring the good parent intentions of courageous parents: a thematic summary from a US-based national survey. Children (Basel). 2020;7(12):265.
5. Hauer JM. Caring for Children Who Have Severe Neurological Impairment: A Life with Grace. Johns Hopkins University Press; 2013.
6. NeuroJourney. Courageous Parents Network. Updated 2022. Accessed August 2024. https://neurojourney.courageousparentsnetwork.org/
Source: Bogetz JF, Oslin E, O’Donnell M, et al. Meaning-making among parents of children with severe neurologic impairment in the PICU. Pediatrics. 2024;153(4):e2023064361. doi:10.1542/peds.2023-064361.
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