Doctoral Dissertation Research: Navigating Care: A Study of Pediatric Cancer Patients undergoing Palliative Care

University Of Florida, Gainesville FL

Investigators

Abstract

The lack of pediatric palliative care facilities continues to negatively impact the health of children suffering from cancer. This is further compounded by a lack of children’s representations and voices in health. In addition to providing funding for the training of a graduate student in the methods of empirical, scientific data collection and analysis, this doctoral dissertation project provides a scientific analysis of children’s conceptualizations of care in relation to socio-cultural differences and historical circumstances which impact the everyday lives of community members, caregivers, and patients. By examining the engagement of children with palliative care practices, this dissertation project will disseminate its data and findings to impact the delivery of health interventions to be more sensitive and suitable for children’s specific needs. The project also broadens the participation of historically underrepresented groups in the production of scientific knowledge. This doctoral dissertation research project examines children’s experiences with pediatric palliative care to determine how they produce individual meanings of care. It has three primary aims: (1) to document the lived experiences of pediatric cancer patients with palliative care and examine their everyday interactions with care providers; (2) to examine how care providers administer and engage in practices of palliative care; and (3) to investigate how socio-cultural factors affect caregivers’ perceptions and practices of palliative care. To achieve these aims, the researcher will integrate visual methods (such as arts-based methods, participatory photography, participatory photo elicitation, and observational sketching) and conduct ethnographic observations, semi-structured interviews, focus group discussions, and archival research. Data will be thematically coded and analyzed to contextualize how children interact with palliative care practices, and whether communitarian social values may shape different ideas of care. This research contributes to anthropological theory on children’s agency in health and improves theorizations of care to account for a more heterogeneous range of experiences. This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.