Research progress on affiliate stigma among primary caregivers of children with cancer

doi:10.3761/j.issn.0254-1769.2025.12.020

Abstract

Abstract:

In recent years，the incidence of childhood cancer has shown a steady upward trend. Due to the unique nature of this disease，the issue of affiliate stigma among primary caregivers of children with cancer has gradually drawn attention. Affiliate stigma not only directly affects caregivers' mental health and quality of life，but also leads to reduced social support and lower self-efficacy，thereby impacting their engagement in the caregiving process and affecting the treatment adherence and prognosis of children with cancer indirectly. This article provides a review covering 5 main areas：the conceptual definition of affiliate stigma，measurement tools，influencing factors，intervention strategies，and insights and recommendations，to provide a theoretical basis and guidance for subsequent research and the development of interventions.

Key words: Children with Cancer, Primary Caregiver, Affiliate Stigma, Nursing Care, Review

摘要：

近年来，儿童癌症的发病率呈逐年上升趋势。由于疾病和人群特殊性，癌症患儿主要照顾者连带病耻感问题逐渐引起关注。连带病耻感不仅直接影响主要照顾者的心理健康和生活质量，还会导致其社会支持减少、自我效能感降低，影响照顾患儿的积极性，从而间接影响癌症患儿的治疗依从性和预后效果。该文介绍了连带病耻感的概念，并对癌症患儿主要照顾者连带病耻感的测量工具、影响因素及干预策略进行综述，并提出相关建议，以期为后续研究及干预措施的制订提供理论依据和指导。

关键词: 癌症患儿, 主要照顾者, 连带病耻感, 护理, 综述

YANG Funa, REN Yunchu, WANG Yongqi, GUO Lanwei, HO Ka Yan, LIU Qi, MAO Ting, ZHAO Lingye, XU Xiaoxia, SHI Hongying. Research progress on affiliate stigma among primary caregivers of children with cancer[J]. Chinese Journal of Nursing, 2025, 60(12): 1531-1537.

杨福娜, 任云楚, 王永琦, 郭兰伟, 何家欣, 刘琪, 毛婷, 赵羚烨, 徐晓霞, 石红英. 癌症患儿主要照顾者连带病耻感的研究进展[J]. 中华护理杂志, 2025, 60(12): 1531-1537.

References 42

[1]	World Health Organization. Childhood cancer[EB/OL].(2021)[2024-06-20]. https://www.who.int/news-room/fact-sheets/detail/cancer-in-children.
[2]	Miller KD, Fidler-Benaoudia M, Keegan TH, et al. Cancer stati-stics for adolescents and young adults,2020[J]. CA Cancer J Clin, 2020, 70(6):443-459.
[3]	Modanloo S, Rohani C, Shirinabadi Farahani A, et al. General family functioning as a predictor of quality of life in parents of children with cancer[J]. J Pediatr Nurs,2019,44:e2-e8.
[4]	刘寿娟, 张燕红, 汤明文, 等. 连带病耻感对精神分裂症患者主要照顾者照顾负担的影响[J]. 中华护理杂志, 2021, 56(2):239-244. DOI URL
	Liu SJ, Zhang YH, Tang MW, et al. The impact of stigma on care burden in primary caregivers of schizophrenics[J]. Chin J Nurs, 2021, 56(2):239-244. DOI URL
[5]	Chang CC, Chen YM, Liu TL, et al. Affiliate stigma and related factors in family caregivers of children with attention-deficit/hyperactivity disorder[J]. Int J Environ Res Public Health, 2020, 17(2):576.
[6]	Ye YF, Deng T, Chen MY, et al. Relationship between affiliate stigma and family quality of life among parents of children with autism spectrum disorders:the mediating role of paren-ting self-efficacy[J]. Arch Psychiatr Nurs, 2024,49:23-31.
[7]	The Union for International Cancer Control(UICC). World can-cer declaration 2013[EB/OL].(2013)[2024-06-20]. https://www_uicc_org.libproxy.v.zzu.edu.cn/sites/main/files/atoms/files/13-1119_UICC_WorldCancerDeclaration_2013_1.pdf.
[8]	Graetz DE, Velasquez T, Chitsike I, et al. Stigma in pediatric cancer:an exploratory study of osteosarcoma and retinoblas-toma in Guatemala,Jordan,and Zimbabwe[J]. JCO Glob Oncol, 2024,10:e2400017.
[9]	Liu DD, Hinton L, Tran C, et al. Reexamining the relationships among dementia,stigma,and aging in immigrant Chinese and Vietnamese family caregivers[J]. J Cross Cult Gerontol, 2008, 23(3):283-299.
[10]	Goffman E. Stigma; notes on the management of spoiled iden-tity[M]. Englewood Cliffs,NJ: Prentice-Hall,1963:412-420.
[11]	Levav I, Rutz W. The WHO world health report 2001 new understanding:new hope[J]. Isr J Psychiatry Relat Sci, 2002, 39(1):50-56.
[12]	Occhipinti S, Dunn J, O'Connell DL, et al. Lung cancer stigma across the social network:patient and caregiver perspectives[J]. J Thorac Oncol, 2018, 13(10):1443-1453. DOI PMID
[13]	戚亚敏. 连带病耻感对孤独症儿童主要照顾者生活质量的影响及中介效应分析[D]. 新乡: 新乡医学院, 2022.
	Qi YM. Influence of stigma associated with autism on the quality of life of primary caregivers of autistic children and its mediating effect[D]. Xinxiang: Xinxiang Medical University, 2022.
[14]	Mak WWS, Cheung RYM. Affiliate stigma among caregivers of people with intellectual disability or mental illness[J]. J Appl Res Intellect Disabil, 2008, 21(6):532-545.
[15]	Fife BL, Wright ER. The dimensionality of stigma:a compari-son of its impact on the self of persons with HIV/AIDS and cancer[J]. J Health Soc Behav, 2000, 41(1):50-67. PMID
[16]	Pan AW, Chung L, Fife BL, et al. Evaluation of the psychome-trics of the social impact scale:a measure of stigmatization[J]. Int J Rehabil Res, 2007, 30(3):235-238.
[17]	尹群明, 陈燕红, 陈玥, 等. 中文版连带内化污名量表在自闭症患儿父母中的修订[J]. 中国临床心理学杂志, 2021, 29(2):370-374.
	Yin QM, Chen YH, Chen Y, et al. Revision of the Chinese Version of the Affiliate Stigma Scale for Parents of Children with Autism[J]. Chin J Clin Psychol, 2021, 29(2):370-374.
[18]	Marlow LAV, Wardle J. Development of a scale to assess cancer stigma in the non-patient population[J]. BMC Cancer, 2014,14:285.
[19]	Ye X, Liu HY, Lu SR, et al. Translation and validation of the Chinese version of the Cancer Stigma Scale[J]. J Oncol Pharm Pract, 2019, 25(7):1622-1630. DOI PMID
[20]	Edelen MO, Chandra A, Stucky B, et al. Developing a Global Cancer Stigma Index[J]. Sage Open, 2014, 4(3):21582440145-47875.
[21]	Posani S. Exploring cancer stigma experienced by pediatric cancer patients and their caregivers in mWanza,Tanzania[D]. Durham,NC, USA: Duke University, 2023.
[22]	Sayed S, Ngugi AK, Mahoney MR, et al. Breast cancer know-ledge,perceptions and practices in a rural community in Coastal Kenya[J]. BMC Public Health, 2019, 19(1):180.
[23]	杨福娜, 杨瑞, 秦妍, 等. 癌症患儿家庭复原力现状及影响因素研究[J]. 中华护理杂志, 2025, 60(4):453-460.
	Yang FN, Yang R, Qin Y, et al. Current situation and influen-cing factors of family resilience of children with cancer[J]. Chin Nurs J, 2025, 60(4):453-460.
[24]	Yang FN, Ho KY, Yorke J, et al. Research progress on sexual functioning and associated factors in childhood cancer survi-vors:a scoping review[J]. EClinicalMedicine, 2024,73:102695.
[25]	Tang WZ, Yusuf A, Jia K, et al. Correlates of stigma for pa-tients with breast cancer:a systematic review and meta-analysis[J]. Support Care Cancer, 2022, 31(1):55.
[26]	廖敏, 唐杰, 王冬华. HIV感染者和AIDS患者病耻感的研究进展[J]. 中华护理杂志, 2019, 54(4):619-623. DOI URL
	Liao M, Tang J, Wang DH. Research progress on stigma among HIV/AIDS patients[J]. Chin J Nurs, 2019, 54(4):619-623.
[27]	Phiri L, Li WHC, Phiri PGMC, et al. Experiences of caregivers of children with cancer in Malawi:a qualitative study[J]. Can-cer Med, 2024, 13(2):e6963.
[28]	Akakpo MG, Owusu Roberts E, Annobil R, et al. Perceptions about the causes and treatment of cancer:a cross-sectional survey of university students in Ghana[J]. Prev Med Rep, 2023, 32:102160.
[29]	Squiers L, Kataria I, Nyblade L, et al. Perceived, experienced, and internalized cancer stigma:perspectives of cancer patients and caregivers in India[R]. Research Triangle Park(NC): RTI Press, 2021.
[30]	Ochoa CY, Chan RY, Cervantes L, et al. Barriers and facilita-tors of Hispanic/Latino parents caregiving for a childhood cancer survivor:a qualitative study[J]. Cancer Causes Control, 2023, 34(2):151-160.
[31]	Hasan Shiri F, Mohtashami J, Nasiri M, et al. Stigma and re-lated factors in Iranian people with cancer[J]. Asian Pac J Cancer Prev, 2018, 19(8):2285-2290.
[32]	Criswell KR. Lung cancer stigma:associated variables and co-ping strategies[D]. California: Loma Linda University, 2016.
[33]	Akin-Odanye EO, Husman AJ. Impact of stigma and stigma-focused interventions on screening and treatment outcomes in cancer patients[J]. E Can Med Sci, 2021,15:1308.
[34]	Ak PD, Atakli D, Yuksel B, et al. Stigmatization and social im-pacts of epilepsy in Turkey[J]. Epilepsy Behav, 2015,50:50-54.
[35]	薛蓉, 王雪静, 杨润平, 等. 基于接纳承诺疗法的心理护理方案在终末期癌症患者中的应用研究[J]. 中华护理杂志, 2024, 59(15):1832-1839. DOI URL
	Xue R, Wang XJ, Yang RP, et al. The application of a psy-chological nursing programme based on acceptance and com-mitment therapy in end-stage cancer patients[J]. Chin J Nurs, 2024, 59(15):1832-1839.
[36]	Stangl AL, Earnshaw VA, Logie CH, et al. The health stigma and discrimination framework:a global,crosscutting framework to inform research,intervention development,and policy on health-related stigmas[J]. BMC Med, 2019, 17(1):31. DOI PMID
[37]	Hasan Shiri F, Mohtashami J, Manoochehri H, et al. Care plan for reducing stigma in cancer disease[J]. Open J Nurs, 2020, 10(11):1142-1154.
[38]	Lemmen J, Mageto S, Njuguna F, et al. A caregivers' perspec-tive on social reintegration and stigma of childhood cancer survivors in Kenya[J]. Psychooncology, 2024, 33(5):e6345. DOI PMID
[39]	Casillas JN, Schwartz LF, Gildner JL, et al. Engaging Latino adolescent and young adult(AYA) cancer survivors in their care:piloting a photonovela intervention[J]. J Cancer Educ, 2021, 36(5):971-980.
[40]	Watt MH, Suneja G, Zimba C, et al. Cancer-related stigma in Malawi:narratives of cancer survivors[J]. JCO Glob Oncol, 2023,9:e2200307.
[41]	Hamann HA, Ver Hoeve ES, Carter-Harris L, et al. Multilevel opportunities to address lung cancer stigma across the cancer control continuum[J]. J Thorac Oncol, 2018, 13(8):1062-1075. DOI PMID
[42]	张璟, 林小芳, 张宇, 等. 反刍在孤独症儿童父母连带病耻感与创伤后成长间的中介作用[J]. 中国心理卫生杂志, 2023, 37(12):1085-1091.
	Zhang J, Lin XF, Zhang Y, et al. Mediating effect of rumina-tion between affiliate stigma and post-traumatic growth in parents of autistic children[J]. Chin Ment Health J, 2023, 37(12):1085-1091.