Abstract
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.