Understanding the experience of family caregivers of patients with leukemia: a qualitative analysis of online blogs

Abstract

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.