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

> **NIH NIH P30** · ST. JUDE CHILDREN'S RESEARCH HOSPITAL · 2021 · $224,375

## 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 organization:** ST. JUDE CHILDREN'S RESEARCH HOSPITAL
- **Principal Investigator:** CHARLES ROBERTS
- **Activity code:** P30 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $224,375
- **Award type:** 3
- **Project period:** 1997-04-01 → 2024-02-29

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10406420

## Citation

> US National Institutes of Health, RePORTER application 10406420, The Impact of Stigma on Cancer Care Decision-Making Among Patients with Osteosarcoma and Retinoblastoma in Zimbabwe, Guatemala and Jordan (3P30CA021765-42S2). Retrieved via AI Analytics 2026-05-25 from https://api.ai-analytics.org/grant/nih/10406420. Licensed CC0.

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