Bell Rose
Department of Nursing, University of New York at Buffalo, Buffalo, New York.
J Adv Pract Oncol. 2017 Jul-Aug;8(5):462-473. Epub 2017 Jul 1.
Patients with chronic lymphocytic leukemia (CLL) are part of a new category of survivors emerging in the population of Americans who are living with cancer. These survivors who have received treatment are living with an incurable cancer characterized by periods of exacerbations and remissions, yet little is known about this population's needs from oncology providers. The purpose of this study was to identify the needs of the CLL survivor who has undergone at least one treatment for CLL. The results of this study led to the development of a clinical plan for these patients based on these needs. Grounded theory methodology was used to guide the study, which used semi-structured interviews to explore these patients' unique needs. Twelve participants were recruited and asked to describe living their lives with CLL. The substantive theory from this study was the overarching category of "Living Under a Cloud of Illness." Additional primary categories included "In the Beginning," "Lens of Life," "Preparing for Illness," and "Advocating for Us." The results of this study can guide the advanced practitioner into patient-centered care based on the needs of the patient with CLL.
慢性淋巴细胞白血病（CLL）患者是美国癌症患者群体中新兴的一类幸存者。这些接受过治疗的幸存者患有无法治愈的癌症，其特点是病情有加重期和缓解期，但对于这一群体对肿瘤学医疗服务提供者的需求却知之甚少。本研究的目的是确定至少接受过一次CLL治疗的CLL幸存者的需求。本研究结果基于这些需求为这些患者制定了临床计划。扎根理论方法被用于指导该研究，该研究通过半结构化访谈来探索这些患者的独特需求。招募了12名参与者，要求他们描述自己与CLL相伴的生活。本研究的实质性理论是“生活在疾病的阴霾之下”这一总体类别。其他主要类别包括“一开始”“生活视角”“为疾病做准备”和“为我们争取权益”。本研究结果可以指导高级从业者根据CLL患者的需求提供以患者为中心的护理。
