Discussion of Spirituality in Family Conferences of Infants With Neurologic Conditions.

INTRODUCTION: Spirituality 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. OBJECTIVES: We sought to characterize the frequency and nature of spiritual statements in conferences between families and clinicians caring for infants with neurologic conditions. METHODS: In 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. RESULTS: 68 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. CONCLUSIONS: Spirituality 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.

Duke Scholars

Author Kathryn IIonka Pollak Population Health Sciences

Author Debra Huffman Brandon School of Nursing

Author Monica Elizabeth Lemmon Pediatrics, Neurology

Author Sharla Marie Rent Pediatrics, Neonatology