Understanding the experience of family caregivers of patients with leukemia: a qualitative analysis of online blogs
发布日期：2024-04-29
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摘要：Although family caregiving is a demanding task, it has the potential to increase the significance and satisfaction of the caregiving process, while also enabling better response to the patient's condition. This study aims to qualitatively explore, describe and analyze the experiences of family caregivers who are taking care of patients with leukemia. With an inductive thematic analysis, data collected from 997 online blog posts generated by 32 Chinese family caregivers of both adult and pediatric patients with leukemia were thoroughly examined. Through a detailed analysis of the blog posts, three main themes were identified: (1) family caregivers' (FCGs') reactions to the leukemia diagnosis, (2) challenges faced in caregiving, and (3) effective coping strategies. The study reveals significant implications for improving the quality of life for family caregivers and enhancing health services for patients with leukemia. Gaining a comprehensive understanding of challenges and hardships faced by FCGs can shed light on enhancing the current medical services. A detailed account of the financial and psychological burdens experienced by FCGs offers valuable insights that can influence the decision-making of healthcare institutions and policymakers, facilitating the implementation of effective medical reforms. The findings underscore the importance of addressing the psycho-social needs of family caregivers, thereby suggesting the need of improved implementation of effective psycho-social support to enhance their overall quality of life. It is recommended that future research focus on developing more socially integrated approaches specifically tailored for family caregivers of patients with leukemia. While this study is primarily exploratory and descriptive, it forms a foundation for further investigation and understanding of the comprehensive family caregiving system for patients with leukemia.
摘要中译：虽然家庭照护是一项充满挑战的任务，但有可能提升照护过程的意义和满意度，改善患者的状况。本研究旨在从质性角度探索、描述和分析中国白血病患者的家庭照护者经验。研究采用了归纳主题分析法，对32名中国成人和儿童白血病患者的家庭照护者在博客上发布的997篇帖子进行了全面分析。通过对这些博客帖子的详细分析，我们识别出了三个主题：(1) 家庭照护者对白血病诊断的反应, (2) 照护过程中面临的挑战, (3) 有效的应对策略。研究揭示了改善家庭照护者生活质量和加强白血病患者医疗服务的重要意义。全面了解家庭照护者所面临的挑战和困难，有助于改善目前的医疗服务。详细了解家庭照护者所承受的经济和心理负担，可以为医疗机构和政策制定者的决策提供有价值的启示，促进实施有效的医疗改革。研究结果强调了满足家庭照护者社会心理需求的重要性，从而表明需要更好地实施有效的社会心理支持，以提高他们的整体生活质量。建议今后的研究重点是开发更多专门针对白血病患者家庭照护者的社会整合方法。虽然这项研究主要是探索性和描述性的，但为进一步调查和了解白血病患者的全面家庭照护系统奠定了基础。
作者：邱梦颖、武宜金
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