血癌幸存者的转变:确定照顾者的经验和支持性护理需求。

IF 3.1 2区 医学 Q2 ONCOLOGY
Journal of Cancer Survivorship Pub Date : 2024-12-01 Epub Date: 2023-07-07 DOI:10.1007/s11764-023-01422-0
M Devyn Mullis, Carla L Fisher, Amanda L Kastrinos, Maria Sae-Hau, Elisa S Weiss, Michelle Rajotte, Carma L Bylund
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引用次数: 0

摘要

目的:生存期护理通常指癌症治疗后的持续保健。雅各布森及其同事主张将其扩展至包括接受延长治疗和维持/预防性疗法的患者,并认为护理的连续性更为复杂。被诊断为血癌的患者的护理过渡可能很复杂。我们试图更好地了解血癌护理者在其确诊家庭成员经历整个护理过程中的 "幸存者过渡 "时的经历:我们对照顾患有血癌的父母或子女的成年人进行了半结构化访谈。根据两种过渡情况,照顾者被分为幸存者组:(1)患者过渡到新的治疗方案(积极治疗或维持治疗)时;(2)患者结束治疗时。我们对研究结果进行了主题分析和三角测量,以比较过渡时期的经历:结果:两组护理人员都表示经历了 "新常态",包括个人、关系和环境的调整。治疗过渡组(n = 23)的照护者还描述了不确定性挑战(如失去 "安全网")和预期中断(如对挑战感到 "措手不及")。而治疗末期过渡组的护理人员(n = 15)则描述了缓解与担忧并存的情况(例如,感到充满希望但又忧心忡忡):结论:照顾者的生存过渡期充满了挑战,其中包括重新适应的困难、不确定性/担忧以及未实现的期望。虽然 "幸存者过渡 "似乎有一个统一的经历,但每个过渡群体都有细微的区别:对癌症幸存者的启示:在整个幸存者过渡时期,需要为照顾者提供量身定制的支持性资源。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Survivorship transitions in blood cancer: Identifying experiences and supportive care needs for caregivers.

Purpose: Survivorship care often refers to continued healthcare after cancer treatment. Jacobsen and colleagues advocated to expand this to include patients on extended treatments and maintenance/prophylactic therapies, recognizing the care continuum as more complex. Transitions of care for individuals diagnosed with a blood cancer can be complicated. We sought to better understand blood cancer caregivers' experiences as their diagnosed family member encountered "survivorship transitions" across the continuum.

Methods: We conducted semi-structured interviews with adults caring for a parent or a child with a blood cancer. Caregivers were segmented into survivorship groups based on two transitional contexts: (1) when patients transitioned to a new line of therapy (active treatment or maintenance therapy); (2) when patients ended treatment. We conducted a thematic analysis and triangulated findings to compare transitional experiences.

Results: Caregivers in both groups reported experiencing a "new normal," which included personal, relational, and environmental adjustments. Caregivers in the treatment transitions group (n = 23) also described uncertainty challenges (e.g., losing their "safety net") and disrupted expectations (e.g., feeling "caught off guard" by challenges). Whereas caregivers in the end-of-treatment transitions group (n = 15) described relief coupled with worry (e.g., feeling hopeful yet worried).

Conclusions: Survivorship transitions for caregivers are riddled with challenges that include difficult readjustments, uncertainty/worry, and unmet expectations. While there seems to be a cohesive experience of "survivorship transitions," each transition group revealed nuanced distinctions.

Implications for cancer survivors: Tailored supportive resources are needed for caregivers throughout survivorship transitions.

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来源期刊
CiteScore
7.00
自引率
10.80%
发文量
149
审稿时长
>12 weeks
期刊介绍: Cancer survivorship is a worldwide concern. The aim of this multidisciplinary journal is to provide a global forum for new knowledge related to cancer survivorship. The journal publishes peer-reviewed papers relevant to improving the understanding, prevention, and management of the multiple areas related to cancer survivorship that can affect quality of care, access to care, longevity, and quality of life. It is a forum for research on humans (both laboratory and clinical), clinical studies, systematic and meta-analytic literature reviews, policy studies, and in rare situations case studies as long as they provide a new observation that should be followed up on to improve outcomes related to cancer survivors. Published articles represent a broad range of fields including oncology, primary care, physical medicine and rehabilitation, many other medical and nursing specialties, nursing, health services research, physical and occupational therapy, public health, behavioral medicine, psychology, social work, evidence-based policy, health economics, biobehavioral mechanisms, and qualitative analyses. The journal focuses exclusively on adult cancer survivors, young adult cancer survivors, and childhood cancer survivors who are young adults. Submissions must target those diagnosed with and treated for cancer.
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