Department of Hematology and Medical Oncology, Winship Cancer Institute, Emory University, Atlanta, Georgia.
Department of Psychology, Stony Brook University-SUNY, Stony Brook, New York.
Cancer. 2019 Nov 15;125(22):4096-4104. doi: 10.1002/cncr.32401. Epub 2019 Jul 29.
Although the number of lymphoma survivors has increased, the needs and research priorities of survivors and their caregivers rarely are examined and addressed. Determining the needs and priorities for this population requires an assessment of the attitudes and experiences of patients and caregivers. The authors conducted a qualitative study with lymphoma survivors and their caregivers to determine care needs and research priorities.
In the first phase, 2 semistructured focus groups were conducted with 15 lymphoma survivors and their caregivers. In phase 2, a total of 19 individual semistructured telephone interviews were conducted with lymphoma survivors and their caregivers. In both phases, participants discussed cancer experiences and research priorities. All interviews were transcribed. MAXQDA software (version 18.0.8) was used for coding and identifying themes.
The majority of participants felt disconnected from their clinical care team due to a lack of communication. Focus group participants noted a lack of information regarding diagnoses, treatment, research, and survivorship care. Participants coped with fear through strong social support and fostering relationships with their clinical care teams. Some caregivers felt completely ignored by clinicians. Participants expressed interest in research, but had difficulty finding relevant studies. Several interviewees desired holistic and survivorship-oriented research and more studies regarding quality of life and mental health.
The results of the current study identified unmet needs in clinical care and patient-oriented research, including needs for a focus on quality of life after treatment, communication between patients and the scientific community, and emotional well-being. Health care professionals can use these data to provide care delivery, supportive services, and research that meets the needs of lymphoma survivors and their caregivers.
尽管淋巴瘤幸存者的数量有所增加，但他们及其照护者的需求和研究重点很少得到检查和解决。确定这一人群的需求和优先事项需要评估患者和照护者的态度和经验。作者对淋巴瘤幸存者及其照护者进行了定性研究，以确定护理需求和研究重点。
在第一阶段，对 15 名淋巴瘤幸存者及其照护者进行了 2 次半结构化焦点小组讨论。在第二阶段，对淋巴瘤幸存者及其照护者共进行了 19 次单独的半结构化电话访谈。在两个阶段中，参与者都讨论了癌症经历和研究重点。所有访谈均进行了转录。使用 MAXQDA 软件（版本 18.0.8）对编码和识别主题进行了分析。
大多数参与者由于沟通不畅而与临床护理团队脱节。焦点小组参与者表示缺乏有关诊断、治疗、研究和生存护理的信息。参与者通过强大的社会支持和与临床护理团队建立关系来应对恐惧。一些照护者感到完全被临床医生忽视了。参与者对研究表现出兴趣，但很难找到相关研究。几位受访者希望进行整体和以生存为导向的研究，以及更多关于生活质量和心理健康的研究。
当前研究的结果确定了临床护理和以患者为中心的研究中存在的未满足需求，包括关注治疗后生活质量、患者与科学界之间的沟通以及情绪健康的需求。医疗保健专业人员可以利用这些数据提供满足淋巴瘤幸存者及其照护者需求的护理服务、支持服务和研究。
