Leukemia is a prevalent cancer with high mortality, despite advancements in treatment. Family caregivers (FCGs) play a crucial role in patient survivorship but experience significant burdens and stress. While existing research focuses on the negative impacts of caregiving, this study aims to explore the broader experiences of Chinese FCGs of leukemia patients, recognizing the potential for caregiving to enhance meaning and satisfaction. The unique cultural context of China, with its emphasis on family care, necessitates understanding the specific challenges and coping mechanisms employed by these caregivers. This study utilizes online blog narratives as a rich data source, offering a less biased and more detailed perspective than traditional methods like interviews. The research questions are: How do FCGs describe their experiences, and what patterns emerge from their narratives?

Several studies highlight the significant burden and psychological distress experienced by FCGs of leukemia patients, influenced by factors like marital status, psychological well-being, family function, social support, income, and leukemia type. Excessive burden negatively impacts caregivers' quality of life and family relationships. However, there's a dearth of research focusing on illness blogs written by FCGs of leukemia patients, particularly in the Chinese context where family care is prioritized. Previous studies often emphasize the negative aspects, neglecting the potential for caregiving to bring meaning and satisfaction. This study seeks to address this gap by examining the experiences of Chinese FCGs through their online blog narratives, acknowledging the influence of traditional Chinese culture and Confucian values on caregiving practices.

This study employed a qualitative thematic analysis of data collected from online blogs. A purposive sample of 997 blog posts from 32 Chinese FCGs (31 women, 1 man) of both adult and pediatric leukemia patients, posted on the Red (Xiaohongshu) application between 2019 and 2021, was selected using keywords like "leukemia," "leukemia diary," etc. Inclusion criteria included publicly accessible blogs with at least 10 posts exceeding 100 words each. Exclusion criteria encompassed non-Chinese language blogs, blogs from organizations, and irrelevant content. Ethical approval was not required given the public nature of the data, though identifiers were removed to ensure anonymity. The six phases of thematic analysis guided data analysis: familiarization, coding, theme development, review, refinement, and reporting. Rigor was ensured through peer debriefing, audit trails, reflexivity, and purposive sampling to maintain credibility, dependability, confirmability, and transferability. Demographic information on caregivers and patients was extracted from the blogs when available.

Three major themes emerged from the analysis: **Theme 1: FCGs' Reactions to the Leukemia Diagnosis:** Caregivers initially struggled to accept the diagnosis, experiencing emotional distress. They often reflected on potential causes (environmental factors, genetics), sometimes blaming themselves. Eventually, they reached a stage of acceptance. **Theme 2: Challenges Faced in Caregiving:** Caregivers faced numerous challenges: * **Difficulties in seeking medical treatment:** Navigating the healthcare system proved difficult, involving long distances, complex procedures, and delays in insurance reimbursements. * **Desperate shortage of support:** Lack of emotional support from family members was common, with some caregivers feeling abandoned and unsupported. * **FCGs' deteriorating health condition:** The intense demands of caregiving led to physical and mental health issues in caregivers, including sleep deprivation, pain, and emotional exhaustion. * **Adversities brought by COVID-19 pandemic:** The pandemic exacerbated existing challenges by limiting medical resources, creating delays in treatment, and impeding family support. * **Heavy financial burden:** High medical costs, especially for self-funded medications, created substantial financial strain, forcing some caregivers to sell assets. * **Overwhelming psychological burden:** Caregivers experienced constant anxiety about the patient's health, the possibility of relapse, and the patient's emotional well-being. They often suppressed their negative emotions to protect others. * **Pressure from multiple caregiving roles:** Juggling patient care with other family responsibilities added further stress. **Theme 3: Effective Coping Strategies:** Caregivers employed various coping mechanisms: * **Efforts to reduce financial burden:** Careful budgeting, leveraging insurance, and negotiating with healthcare providers were key strategies. * **Efforts to reduce psychological burden:** Writing in blogs, expressing emotions, communicating with others, and spiritual practices helped alleviate psychological stress. * **Spiritual practice:** Religious beliefs and reflection on past and future provided strength and hope. * **Cautious optimism about caring and life:** Maintaining a positive attitude and actively learning nursing skills boosted resilience. * **Proactively reporting needs and seeking support:** Openly communicating needs and seeking advice online or from others was vital. * **Support from family, friends, and peers:** Practical and emotional support from family, friends, and fellow caregivers were crucial. * **Humanistic care from healthcare providers:** Compassionate care from healthcare professionals provided significant relief. * **Goodwill from strangers and cybercitizens:** Support from unexpected sources, including online donations, offered additional encouragement.

This study provides valuable insights into the experiences of Chinese FCGs of leukemia patients. The findings align with existing research on caregiver burden and stress but also reveal unique aspects of the Chinese context, influenced by cultural values and the use of online platforms. The initial struggle to accept the diagnosis and subsequent self-reflection on potential causes are noteworthy additions to the literature. The study highlights the significant financial strain due to high medical costs and inefficiencies in the insurance system, underscoring the need for policy reforms. The substantial psychological burden, coupled with the often-unacknowledged self-suppression of negative emotions, emphasizes the necessity for comprehensive psychosocial support. The diverse coping strategies highlight the resilience of caregivers, while also indicating the importance of readily available support systems and compassionate healthcare interactions. The reliance on peer support and the novel use of online platforms for support warrant further investigation.

This study, using a unique data source and qualitative approach, sheds light on the complex experiences of Chinese family caregivers of leukemia patients. The findings emphasize the need for policy changes to alleviate financial burdens and the importance of comprehensive psychosocial support systems. Future research should focus on developing culturally tailored interventions and exploring the potential of online platforms for providing peer support and enhancing communication between informal and formal caregivers. The study's limitations include its focus on a specific cultural context and the use of a single online platform, suggesting the need for broader future research.

The study's limitations include its focus solely on Chinese family caregivers, limiting generalizability to other cultural contexts. The reliance on a single social media platform (Red) may not fully capture the breadth of online experiences. The limited diversity in participants (mostly women) and the missing demographic information constrain the generalizability of the findings. The specific keywords used for data collection might have inadvertently excluded relevant blogs or issues. These factors should be considered when interpreting the results.