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众人拾柴火焰高:造血干细胞移植后的社会支持的重要性,一项定性研究。

It Takes a Village: The Importance of Social Support after Hematopoietic Stem Cell Transplantation, a Qualitative Study.

机构信息

Department of Psychiatry, Brigham and Women's Hospital, Boston, Massachusetts; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts; Harvard Medical School, Boston, Massachusetts; Cancer Outcomes Research and Education Program, Massachusetts General Hospital Cancer Center, Boston, Massachusetts.

Department of Psychiatry, Brigham and Women's Hospital, Boston, Massachusetts.

出版信息

Transplant Cell Ther. 2022 Jul;28(7):400.e1-400.e6. doi: 10.1016/j.jtct.2022.05.007. Epub 2022 May 13.

Abstract

Social support is essential to the recovery of patients who have undergone hematopoietic stem cell transplantation (HSCT). We undertook a qualitative study to explore the specific sources and benefits of social support as experienced by HSCT recipients, as well as their unmet social support needs. We conducted semistructured interviews with 25 HSCT recipients recruited from the Dana Farber Cancer Institute's HSCT database. The interviews explored the sources of support that patients receive, the type of assistance social support networks provide to patients, and unmet needs of social support. Interviews were audio-recorded, transcribed, and coded using Dedoose software. The median age of participants was 63 years (range, 22 to 73 years), and 13 (52%) were female, 20 (80%) were white, and 9 (36%) had been diagnosed with acute myelogenous leukemia. Participants reported receiving a majority of support from immediate family and close friends, with the primary benefits of social support including help with essential daily tasks and household chores, and receipt of emotional support. Participants reported occasional support from other patients but highlighted a desire for increased connection with patients who have undergone the same treatment. Participants also communicated a desire for more guidance on how to optimize the support they do receive and the need for more educational resources for caregivers and supporters to enhance understanding of the HSCT process and lessen patient burden. Participants reported relying on support from their family, friends, and other social connections for essential aspects of their recovery and daily living following HSCT. Although there are many benefits from these relationships, patients emphasized the need for more guidance and resources to facilitate post-transplantation aid and support.

摘要

社会支持对于接受造血干细胞移植(HSCT)的患者的康复至关重要。我们进行了一项定性研究,以探讨 HSCT 受者所经历的社会支持的具体来源和益处,以及他们未满足的社会支持需求。我们从 Dana-Farber 癌症研究所的 HSCT 数据库中招募了 25 名 HSCT 受者,对他们进行了半结构化访谈。访谈探讨了患者接受的支持来源、社会支持网络为患者提供的帮助类型以及未满足的社会支持需求。访谈进行了录音、转录,并使用 Dedoose 软件进行编码。参与者的中位年龄为 63 岁(范围为 22 岁至 73 岁),其中 13 名(52%)为女性,20 名(80%)为白人,9 名(36%)被诊断为急性髓系白血病。参与者报告说,他们主要从直系亲属和亲密朋友那里获得支持,社会支持的主要好处包括帮助完成基本的日常任务和家务,以及获得情感支持。参与者偶尔会从其他患者那里获得支持,但强调希望与接受相同治疗的患者增加联系。参与者还表示希望获得更多关于如何优化他们所收到的支持的指导,以及为照顾者和支持者提供更多教育资源,以增强对 HSCT 过程的理解并减轻患者的负担。参与者报告说,他们依赖家人、朋友和其他社会关系来获得 HSCT 后康复和日常生活的基本方面的支持。尽管这些关系有很多好处,但患者强调需要更多的指导和资源,以促进移植后的援助和支持。

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