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Measuring Stigma in Pediatric Oncology: A Cross-Sectional Analysis of Three Global Sites.

作者信息

Counts Lara E, Tanner Robin S, Chen Yichen, Devidas Meenakshi, Ferrara Gia, Chitsike Inam, Chokwenda Nester, Matsikidze Edith, Cáceres-Serrano Ana M, Fuentes Lucia, Herrera Thelma Velasquez, Halalsheh Hadeel, Fraihat Nadine, Bhakta Nickhill, Jeha Sima, Santana Victor M, Malone Sara M, Graetz Dylan E

机构信息

St Jude Children's Research Hospital, Memphis, TN.

University of Tennessee Health Science Center, Memphis, TN.

出版信息

JCO Glob Oncol. 2025 Jan;11:e2400213. doi: 10.1200/GO.24.00213. Epub 2025 Jan 8.


DOI:10.1200/GO.24.00213
PMID:39778128
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11731491/
Abstract

PURPOSE: Stigma contributes to fear and shame, resulting in delays in care-seeking behavior among individuals with cancer. As a social construct, stigma is affected by language, religion, culture, and local norms. This study explored pediatric cancer stigma at the time of diagnosis across diverse settings through the adaptation of two stigma measures. METHODS: This study was conducted with adolescents and caregivers of children with osteosarcoma and retinoblastoma at three centers in Jordan, Guatemala, and Zimbabwe. The Stigma-related Social Problems (SSP) and the eight-item Stigma Scale for Chronic Illness (SSCI-8) measures were translated into Arabic, Spanish, and Shona and contextually adapted for use with adolescents and caregiver proxies. Adapted measures were pilot-tested and iteratively revised. RESULTS: Extensive adaptations were made to both measures to make them relevant to the local pediatric contexts. The final measures were used in nine patients and 28 caregivers. The exploratory analysis found that domain-specific and overall scale scores for both measures indicate a higher level of stigma than those found in previous studies (SSP: patient [51.23], caregiver [40.74]; SSCI-8: patient [50.41], caregiver [49.78]). Paired, patient-caregiver proxy responses were analyzed, with disagreement between the pairs for both scales. CONCLUSION: Adapted measures detected high levels of stigma among patients with pediatric cancer and their caregiver proxies and demonstrated a lack of concordance in the reports. This suggests the importance of studying stigma in this population and the need to ask patients about their stigma without using proxy measures. The required adaptations suggest a need for stigma measures developed specifically for pediatric cancer.

摘要
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/022c/11731491/6ac5812c9784/go-11-e2400213-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/022c/11731491/6ac5812c9784/go-11-e2400213-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/022c/11731491/6ac5812c9784/go-11-e2400213-g001.jpg

相似文献

[1]
Measuring Stigma in Pediatric Oncology: A Cross-Sectional Analysis of Three Global Sites.

JCO Glob Oncol. 2025-1

[2]
Stigma in Pediatric Cancer: An Exploratory Study of Osteosarcoma and Retinoblastoma in Guatemala, Jordan, and Zimbabwe.

JCO Glob Oncol. 2024-6

[3]
Affiliate stigma and caregiver burden in intractable epilepsy.

Epilepsy Behav. 2018-8

[4]
Arabic translation and cultural adaptation of the stigma-devaluation scale in Jordan.

J Ment Health. 2012-2

[5]
Agreement Between Child Self-report and Caregiver-Proxy Report for Symptoms and Functioning of Children Undergoing Cancer Treatment.

JAMA Pediatr. 2020-11-1

[6]
Type 1 diabetes mellitus in children: Patient reported outcomes.

PLoS One. 2025-5-5

[7]
Validation of the caregiver Pediatric Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events measure.

Cancer. 2021-5-1

[8]
Profile Comparison of Patient-Reported and Proxy-Reported Symptoms in Pediatric Patients With Cancer Receiving Chemotherapy.

JAMA Netw Open. 2022-3-1

[9]
HIV knowledge, stigma, and illness beliefs among pediatric caregivers in Ghana who have not disclosed their child's HIV status.

AIDS Care. 2015

[10]
Quality of Life, Stigma and Burden Perception Among Family Caregivers and Patients with Psychiatric Illnesses in Jordan.

Community Ment Health J. 2017-4

本文引用的文献

[1]
Stigma in Pediatric Cancer: An Exploratory Study of Osteosarcoma and Retinoblastoma in Guatemala, Jordan, and Zimbabwe.

JCO Glob Oncol. 2024-6

[2]
The role of stigma and depression in the reduced adherence among young breast cancer patients in Hungary.

BMC Psychol. 2023-10-9

[3]
Stigma Scale Adaptation and Validation for Measuring COVID-19 Stigma.

Cureus. 2023-5-8

[4]
A Review of Patient-Reported Outcome Measures in Childhood Cancer.

Children (Basel). 2022-9-30

[5]
Assessing stigma in low- and middle-income countries: A systematic review of scales used with children and adolescents.

Soc Sci Med. 2022-8

[6]
The mediator role of stigma in the association of mindfulness and social engagement among breast cancer survivors in China.

Support Care Cancer. 2022-6

[7]
A study on the adaptation of the HIV/AIDS-related Stigma Scale into Turkish.

Perspect Psychiatr Care. 2022-4

[8]
Adaptation and validation of a culturally adapted HIV stigma scale in Myanmar.

BMC Public Health. 2021-9-13

[9]
The evolution of parents' beliefs about childhood cancer during diagnostic communication: a qualitative study in Guatemala.

BMJ Glob Health. 2021-5

[10]
Perception of Stigma in Patients with Neuromyelitis Optica Spectrum Disorder.

Patient Prefer Adherence. 2021-4-12

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