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

Leukemia is among the most common cancers, with 474,519 new cases and 311,594 deaths globally in 2020. In China, 5-year survival for leukemia improved from 19.6% (2003–2005) to 25.4% (2012–2015). Family caregivers (FCGs) are crucial in survivorship, providing physical, emotional, and financial support. Prior studies identify marital and psychological status as contributors to caregiver burden, and family function, social support, income, and leukemia type as predictors of caregivers’ quality of life. Excessive burden and stress negatively affect FCGs and family relationships, yet FCGs often lack resources to manage stressors. An increasing number of FCGs share experiences via online blogs, which provide low-cost, real-time, naturalistic data and support the exchange of information and emotions. While blogs have been used in studies of caregivers for chronic diseases such as dementia, research on leukemia caregivers’ blogs, especially in China, is scarce. Existing leukemia caregiving studies focus on negative impacts, leaving gaps regarding emotions, needs, advice, and meaningful experiences among Chinese FCGs. Cultural context is critical: Confucian traditions emphasize family caregiving and obligation, and Chinese FCGs often provide extensive care both at home and in hospitals. To address this gap, this study analyzes Chinese FCGs’ blog narratives to understand their caregiving experiences. The unsolicited nature of blogs helps avoid recall bias and researcher influence. Research questions: How do FCGs of patients with leukemia describe their caregiving experience? What patterns emerge from their narratives?

Study design: Qualitative thematic analysis focusing on self-initiated online narratives by Chinese family caregivers of patients with leukemia. Data collection: Purposive sampling of public blog texts from Red (Xiaohongshu), a smartphone app for sharing experiences via images, text, video, and livestreaming. Searches conducted Jan 4–Feb 18, 2022 using keywords including “leukemia,” “leukemia diary,” “leukemia blog,” “fighting against leukemia,” and “fighting leukemia diary.” Inclusion criteria: public Chinese-language blogs authored by identified family caregivers, caregiving-related content, ≥10 posts with >100 words each, posts from 2019–2021. Exclusions: non-Chinese language; blogs by organizations; non-caregiving content (e.g., commercials, science news); blogs with <10 posts or posts <100 words; non-text media (videos, pictures, links, comments). Sampling steps: Screenshots of search results were captured; blogger homepages were reviewed via usernames, identifying 53 bloggers; 21 non-FCG bloggers were excluded; final sample included 32 bloggers and 997 posts meeting criteria. Ethics: IRB exemption as data are public; confidentiality preserved by removing identifiers and coding authors (e.g., Blogger 1). Use aligned with norms for public internet data. Data analysis: Braun and Clarke’s six-phase thematic analysis with inductive, data-driven coding. All researchers familiarized with data, conducted independent line-by-line open coding, reconciled codes via discussion to consensus, and iteratively developed, reviewed, and defined themes ensuring conceptual coherence. Analysis was recursive with an audit trail, analytical memos, and reflective journaling. Rigor: Credibility ensured via peer debriefing across coding and theme development; dependability and confirmability through audit trail and reflexivity; transferability addressed by purposive sampling with explicit inclusion/exclusion criteria for a homogeneous sample.

Sample: 997 posts authored by 32 bloggers (31 women, 1 man). Relationships to patients: mothers (25), father (1), female spouse/partner (5), aunt (1). Patients (n=32): male (22), female (10); locations: China (31), Japan (1); disease status: newly diagnosed (28), relapsed (4); age at first diagnosis: <1 year (4), 1–5 years (6), 6–10 years (12), grown-ups (5), not specified (5); types: ALL (16), AML (11), JMML (2), not specified (3). Themes and subthemes: 1) FCGs’ reactions to the leukemia diagnosis - Failure to confront reality: initial shock, disbelief, trauma; described as a “nightmare/thunderstorm.” - Reflection upon causes: FCGs searched for causes (e.g., home renovations, water, toys, plants, food, cosmetics, X-ray); some learned of gene mutations (e.g., E2A-PBX1) from physicians; self-blame noted. - Acceptance: eventual transition from resistance to acceptance and resolve to proceed with care. 2) Challenges faced in caregiving - Difficulties seeking medical treatment: challenges contacting hospitals, age restrictions, long-distance travel and transfers; cross-regional care complicated medical insurance reimbursement. - Desperate shortage of support: lack of emotional/social support from family, in-laws discouraging treatment, limited school support. - Deteriorating caregiver health: fatigue, insomnia, pain, stress-related symptoms due to intensive care demands and sleep deprivation. - Adversities from COVID-19: shortages (e.g., blood bank, ice packs), testing requirements, delays in treatment (e.g., transplant), family separation. - Heavy financial burden: high costs of exams, hospitalization, chemotherapy, transplantation, travel; many OOP items (e.g., caspofungin, Propecia, PICC membranes, targeted drugs). Notable figures: hospitalization costs reaching 490,000 yuan (~67,855 USD); targeted drug 70,000 yuan (~9,791 USD) per 21-day dose, potentially 1.2 million yuan (~168,161 USD) over a year; asset sales and debt considered. - Overwhelming psychological burden: fears of infection, adverse reactions, pain, relapse, death; concern for patients’ psychological well-being; internal conflict between comfort and aggressive treatment; suppression of negative emotions to protect others. - Pressure from multiple caregiving roles: balancing work, care for patients and other family members (elderly, siblings), and co-morbid illnesses in family; role strain and stress. 3) Effective coping strategies - Reducing financial burden: stringent expense control; leveraging medical, commercial insurance and critical illness compensation; optimizing treatment plans via communication to reduce costs (e.g., early discharge to save a day’s expense). - Reducing psychological burden: catharsis via blogging and private crying; emotional support through conversations with peers in hospital; finding inner peace. - Spiritual practice: religious prayers, temple visits, symbolic acts (name change), reminiscing positive memories, maintaining hope for reunion and recovery. - Cautious optimism: learning nursing and pharmacology knowledge; meticulous infection control and diet sterilization; promoting positive attitudes in self and encouraging patients. - Proactively reporting needs and seeking support: informational needs (transplant, nursing, cross-province treatment, chemo, infection prevention), emotional needs (seeking a shoulder to lean on), and financial needs (fundraising via Red, WeChat, Alipay, Shuidichou, Red Cross). - Support sources: family and friends (sharing caregiving tasks, financial support, mutual encouragement), peers (wardmates’ emotional encouragement and practical knowledge), healthcare providers (humanistic care, bed reservation, rehab advice, off-duty nursing instruction, emotional comfort), strangers/cybercitizens (donations, discounts, free services, housing help).

The analysis of unsolicited online narratives captured nuanced and diverse perspectives of Chinese family caregivers of both adult and pediatric patients with leukemia. Findings confirm that initial diagnosis and relapse are traumatic for FCGs due to leukemia’s life-threatening nature. A novel contribution is the identification of FCGs’ active contemplation of potential causes (including genetic factors), suggesting the value of educational interventions addressing etiology, prevention, and family planning considerations. Financial toxicity was pronounced, exacerbated by high OOP costs for long-term, often imported medications not covered by insurance and by complex interregional reimbursement procedures. Streamlining cross-regional reimbursement could improve access and continuity of care. Psychological distress was substantial, with notable self-suppression of emotions to maintain family harmony, reflecting cultural values and underscoring the need for psychosocial interventions attentive to family-system dynamics. Role strain was pervasive, influenced by Confucian values of filial piety and self-sacrifice. Despite these burdens, FCGs employed positive coping strategies—acquiring medical knowledge, cost-optimizing care, engaging in catharsis, spirituality, and peer support—and benefited from humanistic care by providers and support from peers and online communities. Compared with findings from some Western contexts that note maladaptive coping (e.g., overeating, self-medication), this cohort emphasized self-regulation and esteem-consistent strategies, potentially reflecting cultural differences. The prominence of peer and cybercitizen support is a distinctive feature enabled by blogging, pointing to opportunities to integrate online peer support and provider engagement to enhance health literacy, coping, and decision-making. Overall, addressing financial, informational, and psychosocial needs through coordinated healthcare systems and policy reforms can improve FCG well-being and indirectly benefit patient outcomes.

This qualitative thematic study of Chinese family caregivers’ online blogs demonstrates that, despite substantial financial and psychological burdens, caregivers adapt positively through personal effort and external support. Caregiving and psychological adaptation are complex and embedded in the family system. The findings call for healthcare system reforms and a deeper understanding of informal caregivers’ roles to meet their needs. Clinicians should provide appropriate support and maintain effective communication with families. Future research should design and evaluate interventions for informal caregiving to improve caregiver well-being and, ultimately, the quality of life of patients with leukemia.

The sample included only Chinese family caregivers and drew data from a single social networking application (Red/Xiaohongshu), potentially omitting relevant blogs and issues due to keyword-based sampling. Participant diversity was limited (31 women, 1 man), and some demographic information was missing. These factors constrain generalizability and transferability. While blogs provide rich, naturalistic data, they also have inherent limitations, including potential selection bias and unverified contextual details.