Kulikowski Julia D, Namisango Eve, Rosa William E
Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
African Palliative Care Association, Kampala, Uganda.
Palliat Support Care. 2025 Jan 21;23:e31. doi: 10.1017/S1478951524002189.
Cancer is associated with physical, social, spiritual, and psychological changes in patients and their caregivers. However, in sub-Saharan Africa, there is lack of evidence on the impact of gender, social norms, and relationship dynamics in the face of terminal illness. The aim of this paper is to explore how gender identity, social norms, and power relations are impacted when a person is living in Uganda with advanced cancer.
Focus groups with adult men and women living with advanced cancer in Uganda were conducted. Interviews explored the social effects of cancer and common challenges, including how both disease and treatment affect the patient and marital relationships within their families. Participants' recommendations were sought to improve the social well-being of patients and their families. Data were analyzed using inductive thematic analysis.
Men and women experienced negative changes in their roles and identities, often feeling unable to fulfill their marital duties in terms of intimacy, their social roles and responsibilities based on societal expectations. Men expressed loss of a "masculine" identity when unable to provide economically for the household. This led to tension in the familial power dynamics, contributing to relationship breakdown and gender-based violence (GBV) against spouses. Women noted challenges with parenting, relationship breakdowns, and increased GBV.
Gender impacts the patient and the family dynamic throughout the life course, including during advanced cancer. Patients and caregivers experience a change in their roles and identities while coping with existential distress and end-of-life tasks. Given these results, gender considerations and dynamics should be incorporated into overall palliative care provision. In addition, there is a need to integrate GBV screening and support in cancer services to address social health and safety needs in the context of serious illness.
癌症与患者及其照顾者的身体、社会、精神和心理变化相关。然而，在撒哈拉以南非洲地区，面对晚期疾病时，缺乏关于性别、社会规范和关系动态影响的证据。本文旨在探讨当一个人在乌干达患有晚期癌症时，性别认同、社会规范和权力关系是如何受到影响的。
对乌干达患有晚期癌症的成年男性和女性进行了焦点小组访谈。访谈探讨了癌症的社会影响和常见挑战，包括疾病和治疗如何影响患者及其家庭中的婚姻关系。征求了参与者关于改善患者及其家庭社会福祉的建议。使用归纳主题分析法对数据进行了分析。
男性和女性在角色和身份上都经历了负面变化，常常觉得无法履行基于社会期望的亲密关系中的婚姻职责、社会角色和责任。男性表示，当无法在经济上供养家庭时，会失去“男性”身份。这导致了家庭权力动态的紧张，促成了关系破裂和针对配偶的性别暴力。女性指出了育儿、关系破裂和性别暴力增加方面的挑战。
性别在整个生命过程中，包括在晚期癌症期间，都会影响患者和家庭动态。患者和照顾者在应对生存困境和临终任务时，其角色和身份会发生变化。鉴于这些结果，应将性别因素和动态纳入整体姑息治疗服务中。此外，有必要在癌症服务中纳入性别暴力筛查和支持，以满足重病背景下的社会健康和安全需求。
