Changing Perceptions About Childhood Cancer Stigma
Support, understanding, and inclusion can help reduce the impact of cancer stigma on children with cancer and their families.
When your child is diagnosed with cancer, you may face many challenges. These may include managing treatment plans, spending time in the hospital, traveling for care, and dealing with money concerns. Beyond these challenges, many families face another serious problem: stigma.
Cancer stigma means negative beliefs or attitudes about a person because they have cancer. These beliefs can come from a person’s own thoughts and fears. They can also come from neighbors, friends, and even family members.
Stigma can cause harm. It may make families less likely to seek care or follow treatment plans. This can affect a child’s health.
How stigma can affect families
Families experience stigma in different ways. Both children with cancer and their caregivers can be affected. Families may experience:
- Perceived stigma: Worrying about how others may judge them because of cancer
- Internalized stigma: Believing negative things about themselves
- Discrimination: Being treated unfairly because of cancer
Stigma can also lead to feelings of isolation. For children, stigma may show up at school or during social activities. They may be treated unfairly or left out of events like birthday parties. Caregivers may feel excluded from family gatherings or face problems at work. They may also lose friends or feel less support from their community or extended family.
Stigma across cultures
Children with cancer and their caregivers around the world share many of the same stigma experiences. At the same time, stigma can look different across cultures. Cultural values, religious beliefs, and social norms all shape how people understand cancer and how they respond to it. These factors can affect how families are treated and how they feel about the diagnosis.
There has been limited research on how cancer stigma affects pediatric patients and families across different cultures.
Studying cancer stigma around the world
To address this gap, the Culture and Communication team at St. Jude Children’s Research Hospital began studying childhood cancer stigma.
To learn more about stigma around the world, the team conducted interviews with patients, caregivers, and clinicians in Jordan, Guatemala, and Zimbabwe. They learned that many patients and caregivers were scared and had misconceptions about cancer. Some beliefs were influenced by media messages, past experiences in their community, and religious beliefs.
Patients and caregivers at all sites reported stigma. This shows that feelings of isolation and discrimination exist across cultures. Patients and caregivers said they felt stigma at community events, in their own homes, and during everyday outings like going to church or the movie theater.
The research also found an important problem: Stigma in children with cancer was not being measured.
A new tool to understand stigma
This led to a new project called RESPECT, which stands for Researching Stigma in Pediatric Cancer Tool. This project is led by Dylan Graetz, MD, at St. Jude, and Sara Malone, PhD, at Washington University in St. Louis.
The team developed 2 new surveys. One is for children with cancer. The other is for caregivers. Patients, caregivers, stigma experts, and health care professionals from around the world helped shape the surveys.
The surveys are available in English, Spanish, and Arabic. They are designed to respect cultural differences while measuring stigma in a clear and meaningful way.
What this means for patients and caregivers
The RESPECT project recently finished data collection at several sites, including St. Jude, Washington University in St. Louis, Unidad Nacional De Oncologia Pediatrica in Guatemala, and King Hussein Cancer Center in Jordan.
These new tools will help researchers better understand how stigma affects children with cancer and their families. When stigma can be measured, it becomes easier to:
- Identify where families need more support
- Create programs that reduce isolation and discrimination
- Improve health outcomes for children with cancer
Looking ahead
The research team has many next steps planned. They are currently adapting the surveys into other languages so that they can be used in more parts of the world.
The team is also beginning to design interventions, or tools, to help lessen the impact of stigma. It is not yet clear what works best. But patient education and support from others with similar experiences may help families feel less alone.
By learning more about cancer stigma and sharing accurate information, researchers, families, and communities can work together to replace myths with facts. Through research and trusted resources like the Together by St. Jude™ online resource, families can feel seen, supported, and understood.
References:
- Malone S, Counts L, Zabotka L, et al. Stigma measurement in health: a systematic review. EClinicalMedicine. Elsevier Ltd. 2025;86. doi:10.1016/j.eclinm.2025.103360
- Weaver MS, Arora RS, Howard SC, et al. A practical approach to reporting treatment abandonment in pediatric chronic conditions. Pediatr Blood Cancer. John Wiley and Sons Inc. 2015;62(4):565-570. doi:10.1002/pbc.25403
- Golberstein E, Eisenberg D, Gollust S. Perceived Stigma and Mental Health Care Seeking. 2008;59(4).
- Link BG, Phelan JC. CONCEPTUALIZING STIGMA. 2001. www.annualreviews.org
- Corrigan PW, Rao D. On the Self-Stigma of Mental Illness: Stages, Disclosure, and Strategies for Change. Vol 57. 2012. www.TheCJP.ca
- Graetz DE, Velasquez T, Chitsike I, et al. Stigma in Pediatric Cancer: An Exploratory Study of Osteosarcoma and Retinoblastoma in Guatemala, Jordan, and Zimbabwe. JCO Glob Oncol. 2024;(10). doi:10.1200/GO.24.00017
- Graetz D, Rivas S, Fuentes L, et al. The evolution of parents’ beliefs about childhood cancer during diagnostic communication: A qualitative study in Guatemala. BMJ Glob Health. 2021;6(5). doi:10.1136/bmjgh-2020-004653
- Counts LE, Tanner RS, Chen Y, et al. Measuring Stigma in Pediatric Oncology: A Cross-Sectional Analysis of Three Global Sites. JCO Glob Oncol. 2025;(11). doi:10.1200/GO.24.00213
