Background 

Family caregivers play a vital role in providing care and support for patients with life-threatening hematologic diseases. Extensive patient care needs and long-term treatment trajectories can negatively affect the health of caregivers. Despite the importance of supporting caregivers, few studies examine family caregivers’ experiences and support needs during treatment.

Objective 

To explore the role, experiences, and needs of family caregivers of patients with hematologic malignancies during treatment.

Methods 

An exploratory longitudinal qualitative study using serial semistructured interviews with caregivers of hematologic patients was carried out. Data were analyzed using thematic analysis.

Results 

A sample of 16 caregivers completed 47 interviews. Three themes and 2 subthemes were identified: (1) committing to an unconditional mission while adjusting to a changeable situation: developing resilience over time; (2) being an invisible and inseparable sufferer: cultivating hope one day at a time; and (3) balancing between sacrificing one’s own needs and self-care.

Conclusions 

During treatment, caregivers face long-term psychological and physical distress, social isolation, and loneliness due to the extended life-threatening situation imposing shifting challenges and needs. Future research should explore the concept of social support in caregiver resilience and investigate psychosocial interventions in hematologic caregivers.

Implications for Practice 

Healthcare professionals should address caregiver needs throughout the patient’s treatment and provide new supportive initiatives to lessen the burden of care in hematologic caregivers. Facilitating peer support and deploying a family-oriented approach considering the patient-caregiver dyad as a subject for care have implications for clinical nursing practice.

中文翻译：

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成人血液系统恶性肿瘤患者治疗期间护理人员的经验和需求：一项定性纵向研究

背景 

家庭护理人员在为危及生命的血液病患者提供护理和支持方面发挥着至关重要的作用。广泛的患者护理需求和长期的治疗轨迹会对护理人员的健康产生负面影响。尽管支持照顾者很重要，但很少有研究考察家庭照顾者在治疗期间的经历和支持需求。

客观的 

探讨血液系统恶性肿瘤患者家庭照顾者在治疗过程中的作用、经验和需求。

方法 

进行了一项探索性纵向定性研究，该研究使用对血液病患者护理人员的系列半结构化访谈。使用主题分析对数据进行分析。

结果 

16 名护理人员的样本完成了 47 次访谈。确定了三个主题和两个子主题：（1）在适应多变的情况时致力于无条件的使命：随着时间的推移发展韧性；(2) 做一个看不见的、形影不离的受难者：一天一天地培养希望；(3) 在牺牲自己的需要和自我照顾之间取得平衡。

结论 

在治疗过程中，护理人员面临长期的心理和身体困扰、社会孤立和孤独感，这是由于长期威胁生命的情况带来了不断变化的挑战和需求。未来的研究应探讨照顾者复原力中的社会支持概念，并调查血液照顾者的心理社会干预。

对实践的启示 

医疗保健专业人员应在整个患者治疗过程中解决护理人员的需求，并提供新的支持性举措以减轻血液护理人员的护理负担。促进同伴支持和部署以家庭为导向的方法，将患者-照顾者二元组视为护理对象，这对临床护理实践具有重要意义。