Cultural Meanings of Childhood and Care Provision in Pediatric Palliative Care

• In Event: 30866 - Culture and Meaning in Health and Medicine

Abstract

The dramatic reduction in childhood mortality and the heightened emotional investment in children have transformed child death into a rare and emotionally unbearable event in the United States. However, a significant proportion of child deaths still result from congenital anomalies, premature births, cancer, cardiovascular diseases, and neurological conditions. Pediatric palliative care has emerged to provide consultations to medical teams and parents caring for children with life-limiting illnesses while also offering support to these children and their families. While research on hospice palliative care has largely focused on older adults, little is known about how cultural understandings of childhood shape palliative needs and care provision. Drawing on ethnographic observations of two pediatric palliative care teams and interviews, this paper examines how healthcare professionals and parents perceive children’s quality of life in the context of life-limiting conditions and how these cultural understandings shape the palliative care and support available to these children and their families. First, this study extends theoretical discussions of age as a structuring force by offering insights into how the cultural schemas of childhood and adulthood shape the integration and utilization of palliative and hospice care. Second, it reveals the interactive meaning-making processes among pediatric palliative care professionals, medical teams, and families, highlighting the complex interplay and potential tensions between medical assessment, prognostic uncertainty, cultural beliefs, and moral considerations in determining what is best for these children. Third, it explores how cultural meanings of childhood in life-limiting contexts intersect with social factors such as class and race/ethnicity, shaping diverse perspectives on children’s quality of life and the lived experiences of their families.

Author

• Ya-Ching Huang, Boston University