Centre for Epidemiology and Evidence-Based Practice, Department of Social and Preventive Medicine, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia.
Faculty of Health Sciences, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia.
Support Care Cancer. 2021 Oct;29(10):5811-5819. doi: 10.1007/s00520-021-06148-2. Epub 2021 Mar 19.
Delivery of supportive cancer care is often deemed a low priority in resource-limited settings. We aimed to explore the sources of emotional distress, the related support and the unmet needs of cancer survivors in Malaysia, where cancer survivorship services are presently limited.
Twenty focus group discussions were conducted with 102 cancer patients from diverse ethnic and socioeconomic backgrounds. Thematic analyses were performed.
Patient narratives suggested that emotional distress arose from direct and indirect stressors. Direct stressors comprised physical and cognitive side effects of cancer surgery and therapies, and fear of recurrence. Indirect stressors included worry over dependent family members, financial distress following cancer, working with cancer and lack of practical support at home. Distress from altered physical appearances, fear of recurrence and lack of practical support were mainly raised by women, implying that men and women may have disproportionate emotional needs. Emotional support largely came from informal sources including self, family, friends and religion. While formal emotional support from professional counsellors and cancer support groups was acknowledged as important, it appeared to be largely lacking. Unmet needs in coping with fear of recurrence, financial distress, workplace discrimination and household chores were particularly highlighted.
The unmet needs revealed in this study provide insights to initiate actionable changes to improve the emotional wellbeing of people living with cancer in settings where cancer survivorship services are still in its infancy.
在资源有限的环境中，提供支持性癌症护理通常被认为是低优先级的。我们旨在探讨马来西亚癌症幸存者的情绪困扰来源、相关支持以及未满足的需求，因为马来西亚目前的癌症生存服务有限。
对来自不同种族和社会经济背景的 102 名癌症患者进行了 20 次焦点小组讨论。进行了主题分析。
患者的叙述表明，情绪困扰源于直接和间接的压力源。直接压力源包括癌症手术和治疗的身体和认知副作用，以及对复发的恐惧。间接压力源包括对依赖家庭成员的担忧、癌症后的经济困境、与癌症一起工作以及在家中缺乏实际支持。对身体外貌改变、复发恐惧和缺乏实际支持的困扰主要是由女性提出的，这表明男性和女性可能有不成比例的情绪需求。情绪支持主要来自非正式来源，包括自我、家庭、朋友和宗教。虽然来自专业顾问和癌症支持团体的正式情绪支持被认为很重要，但它似乎在很大程度上是缺乏的。在应对对复发的恐惧、经济困境、工作场所歧视和家务方面的未满足需求尤其突出。
本研究中揭示的未满足需求为在癌症生存服务仍处于起步阶段的环境中改善癌症患者的情绪健康提供了见解，以采取可行的措施来进行改善。
