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Exploration of motivation to participate in a study of cancer-related cognitive impairment among patients with newly diagnosed aggressive lymphoma: a qualitative sub-study.
Supportive Care in Cancer ( IF 3.1 ) Pub Date : 2021-09-08 , DOI: 10.1007/s00520-021-06527-9
Priscilla Gates 1, 2 , Haryana Dhillon 3 , Karla Gough 2, 4 , Carlene Wilson 5, 6 , Eliza Hawkes 1, 7 , Lindsay Scudder 1 , Tania Cushion 1 , Meinir Krishnasamy 8, 9, 10
Affiliation  

PURPOSE Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. This qualitative sub-study was undertaken as part of a larger prospective longitudinal study in which recruitment and retention were very high. The aim was to gain an understanding of participants reasons for ongoing participation, at a time of heightened stress related to a new diagnosis of aggressive lymphoma and the rapid commencement of treatment. METHODS This qualitative descriptive sub-study included semi-structured interviews with twenty-seven participants. Interviews were recorded and transcribed, and a thematic descriptive approach was used to analyse the data. RESULTS Twenty-seven interviews were completed. Four themes described participants' motivation to consent and continue with the study. These included ease of participation, personal values, self-help and valued additional support. Participants understood the requirements of the study, and data collection occurring during hospital visits was perceived to be convenient. Interviewees confirmed that the study fulfilled desire to "help others". Although testing was intense and challenging, it provided feedback on current functioning and was described by some as a "welcome distraction" and enjoyable. Finally, interaction with the study nurse was perceived as an additional beneficial oversight and support. CONCLUSION Achieving sustained participation in a prospective study with patients undergoing treatment is facilitated where the logistical demands of data collection are minimised; a clinician from the service is included; the tasks are seen as inherently interesting; and care is taken to provide empathic support throughout. TRIAL REGISTRATION Australian New Zealand Clinical Trials Registry ACTRN12619001649101.

中文翻译:

探索新诊断侵袭性淋巴瘤患者参与癌症相关认知障碍研究的动机:一项定性子研究。

目的 癌症相关认知障碍 (CRCI) 是公认的癌症及其治疗的不良后果。这项定性子研究是作为一项更大的前瞻性纵向研究的一部分进行的,其中招募和保留率非常高。目的是在与侵袭性淋巴瘤的新诊断和快速开始治疗相关的压力加剧之际,了解参与者持续参与的原因。方法 这项定性描述性子研究包括对 27 名参与者的半结构化访谈。采访被记录和转录,并使用主题描述性方法来分析数据。结果 完成了 27 次访谈。四个主题描述了参与者同意并继续研究的动机。这些包括易于参与、个人价值观、自助和有价值的额外支持。参与者了解研究的要求,并且在医院就诊期间进行的数据收集被认为是方便的。受访者证实,这项研究实现了“帮助他人”的愿望。尽管测试是激烈且具有挑战性的,但它提供了有关当前功能的反馈,并被一些人描述为“受欢迎的分心”和令人愉快的。最后,与研究护士的互动被认为是额外的有益监督和支持。结论 在将数据收集的后勤需求降至最低的情况下,有助于实现对正在接受治疗的患者进行的前瞻性研究的持续参与;包括该服务的临床医生;这些任务被认为是天生有趣的;并注意在整个过程中提供移情支持。试验注册澳大利亚新西兰临床试验注册 ACTRN12619001649101。
更新日期:2021-09-08
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