The Impact of Stigma on Cancer Care Decision-Making Among Patients with Osteosarcoma and Retinoblastoma in Zimbabwe, Guatemala and Jordan

NIH RePORTER · NIH · P30 · $224,375 · view on reporter.nih.gov ↗

Abstract

Abstract/Project summary This application is being submitted in response to the Notice of Special Interest (NOSI) identified as “NOT-CA-21-026”, as a supplement to the St. Jude Comprehensive Cancer Center (SJCCC) P30. A core objective of the SJCCC is to increase access to cancer care for children. As part of this goal, SJCCC seeks to understand the role of social and cultural factors (such as stigma) that influence cancer care acceptance and adherence globally. Stigma has been demonstrated to affect healthcare acceptance and outcomes for adult patients with a myriad of health conditions, including cancer. However, the impact of stigma on pediatric cancer care is understudied. Over 90% of children diagnosed with cancer live in low- and middle-income countries (LMICs). In these settings, stigma has been noted to affect quality of cancer care delivery and contribute to treatment abandonment, a leading cause of death for children with cancer in LMICs. Studies from individual institutions have alluded to the ways in which culture informs stigma, however no global or cross-regional work has been done to compare the manifestations of stigma across LMICs. The aims of this application are to 1) explore the ways in which stigma influences decision-making and cancer care acceptance in Guatemala, Jordan, and Zimbabwe, and 2) identify potential strategies and opportunities to mitigate stigma during cancer treatment and decision making. We will leverage longstanding partnerships through SJCCC and the Department of Global Pediatric Medicine to conduct an exploratory qualitative study at three national cancer centers in these geographically, culturally, and socioeconomically diverse settings. The Health Stigma and Discrimination Framework, a previously published model designed to facilitate global stigma research across healthcare conditions, will be used to design a semi-structured interview guide and analysis focused on stigma drivers and facilitators, as well as stigma experiences and practices. Three participant groups will be included: parents of children with cancer, adolescent patients, and healthcare providers. This will enable analysis based on the multiple perspectives involved in the pediatric care triad. This study will specifically focus on patients with osteosarcoma and retinoblastoma, as well as their parents and providers. Stigma is highly relevant for these diagnoses due to frequent need for appearance-altering surgery and these cancers offer a model to explore stigma among infant as well as adolescent patient populations. This study will be the first to explore how stigma-related concerns influence decision-making among pediatric oncology patients and families in LMICs, and how these effects might be mitigated. Findings will lay the groundwork for future interventions aimed at reducing stigma and its role in pediatric cancer care.

Key facts

NIH application ID
10406420
Project number
3P30CA021765-42S2
Recipient
ST. JUDE CHILDREN'S RESEARCH HOSPITAL
Principal Investigator
CHARLES ROBERTS
Activity code
P30
Funding institute
NIH
Fiscal year
2021
Award amount
$224,375
Award type
3
Project period
1997-04-01 → 2024-02-29