Melesse Tenaw Gualu, Chau Janita Pak Chun, Li William Ho Cheung, Yimer Mulugeta Ayalew
The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong Special Administrative Region; Department of Paediatrics and Child Health Nursing, College of Health Sciences, Debre Markos University, Ethiopia.
The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong Special Administrative Region.
Eur J Oncol Nurs. 2023 Oct;66:102376. doi: 10.1016/j.ejon.2023.102376. Epub 2023 Jun 25.
Studies from different countries show that caregivers of children with haematological cancer receiving chemotherapy encounter substantial distress when witnessing their children's suffering from the illness and chemotherapy side effects, alongside experiencing psychosocial problems and financial difficulties. However, no studies for this are available from Ethiopia in its specific cultural background and health care system. Thus, this study aimed to explore and bring into light the experiences of Ethiopian family caregivers of children with haematological malignancies receiving chemotherapy.
A qualitative descriptive study was conducted using a maximum variation purposive sampling method among 20 caregivers. Semi-structured in-depth face-to-face interviews were conducted until no new themes discovered. The data were analysed through qualitative thematic analysis.
Participants believed cancer comes from different reasons and chemotherapy is ineffective in curing cancer. They identified various chemotherapy-related side effects, and psychosocial problems. The lack of health insurance, loss of job or income, and high cost of treatments were the major financial challenges. Adhering to treatments, acceptance and reassurance, religious and spiritual therapies, traditional medicine, and a support system were the major coping strategies. They had needs for improved support in information and education, psychosocial support, and in the availability of medications.
Systematic health assessment, provision of targeted information and education, psychosocial support, nursing care respecting the caregivers' positive coping strategies, improvement in chemotherapy medication availability, and facilitating connections with supporting organisations would help improve child outcomes and address caregiver needs.
来自不同国家的研究表明,血液系统癌症患儿接受化疗时,其照料者在目睹孩子遭受疾病和化疗副作用折磨的同时,还会经历心理社会问题和经济困难,从而承受巨大痛苦。然而,在埃塞俄比亚特定的文化背景和医疗体系下,尚无此类研究。因此,本研究旨在探索并揭示埃塞俄比亚家庭照料者照料接受化疗的血液系统恶性肿瘤患儿的经历。
采用最大差异目的抽样法,对20名照料者进行了定性描述性研究。进行半结构化深入面对面访谈,直至未发现新主题。通过定性主题分析对数据进行分析。
参与者认为癌症由不同原因引起,化疗对治愈癌症无效。他们识别出了各种与化疗相关的副作用以及心理社会问题。缺乏医疗保险、失业或收入损失以及高昂的治疗费用是主要的经济挑战。坚持治疗、接受和安慰、宗教和精神疗法、传统医学以及支持系统是主要的应对策略。他们需要在信息与教育、心理社会支持以及药物供应方面得到更好的支持。
系统的健康评估、提供有针对性的信息与教育、心理社会支持、尊重照料者积极应对策略的护理、改善化疗药物供应以及促进与支持组织的联系,将有助于改善儿童治疗效果并满足照料者的需求。