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J Pain Symptom Manage · Sep 2024
Discussion of Spirituality in Family Conferences of Infants with Neurologic Conditions.
- Dana Peralta, Nikhita Nanduri, Simran Bansal, Sharla Rent, Debra H Brandon, Kathryn I Pollak, and Monica E Lemmon.
- Department of Pediatrics (D.N., S.B., S.R., D.B., M.L.), Duke University School of Medicine, Durham, North Carolina, US. Electronic address: dana.peralta@duke.edu.
- J Pain Symptom Manage. 2024 Sep 24.
IntroductionSpirituality serves as a mechanism to understand and cope with serious illness, yet little is known about how families and clinicians incorporate spirituality in pediatric family conferences.ObjectivesWe sought to characterize the frequency and nature of spiritual statements in conferences between families and clinicians caring for infants with neurologic conditions.MethodsIn this descriptive qualitative study, we used an existing dataset of audio-recorded, de-identified, transcribed family conferences of infants with neurologic conditions. Inclusion criteria for infants were 1) age < 1 year, 2) presence of a neurologic condition, and 3) planned conversation about neurologic prognosis or goals of care. We used a content analysis approach to code the data.Results68 family conferences were held for 24 infants and 36 parents. Most parents (n = 32/36, 89%) self-identified as spiritual. References to spirituality occurred in the 32% of conferences (n = 22/68). Spiritual discussion included three domains: 1) Spiritual beliefs and practices, 2) Spiritual support, and 3) Parent-child connection as sacred. Clinicians' responses to family member spiritual statements were inconsistent and included providing affirmation, exploring goals of care, and continuing discussion of clinical information.ConclusionsSpirituality was discussed in approximately one-third of family conferences. Clinician engagement with spirituality discussion was variable. These findings highlight a need for training on when and how to discuss spirituality in conversations with families of seriously ill infants.Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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