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优先解决青年小儿脑肿瘤幸存者的问题并改善资源:一项在线调查的结果。

Prioritizing Solutions and Improving Resources among Young Pediatric Brain Tumor Survivors: Results of an Online Survey.

机构信息

Hematology-Oncology Department, Sainte-Justine University Hospital Center, Montreal, QC H3T 1C5, Canada.

Psycho-Oncology Center (CPO), Sainte-Justine University Hospital Research Center, Montreal, QC H3T 1C5, Canada.

出版信息

Curr Oncol. 2023 Sep 19;30(9):8586-8601. doi: 10.3390/curroncol30090623.

Abstract

Pediatric Brain Tumor Survivors (PBTS) often experience social, academic and employment difficulties during aftercare. Despite their needs, they often do not use the services available to them. Following a previous qualitative study, we formulated solutions to help support PBTS return to daily activities after treatment completion. The present study aims to confirm and prioritize these solutions with a larger sample. We used a mixed-methods survey with 68 participants (43 survivors, 25 parents, PBTS' age: 15-39 years). Firstly, we collected information about health condition, and school/work experience in aftercare. Then, we asked participants to prioritize the previously identified solutions using Likert scales and open-ended questions. We used descriptive and inferential statistics to analyze data, and qualitative information to support participants' responses. Participants prioritized the need for evaluation, counseling, and follow-up by health professionals to better understand their post-treatment needs, obtain help to access adapted services, and receive information about resources at school/work. Responses to open-ended questions highlighted major challenges regarding the implementation of professionals' recommendations at school/work and the need for timely interventions. These results will help refine solutions for PBTS and provide key elements for future implementation. Translating these priorities into action will need further work involving professionals and decision makers.

摘要

儿科脑瘤幸存者(PBTS)在接受治疗后往往会在社交、学业和就业方面遇到困难。尽管他们有需求,但他们往往不会利用现有的服务。在之前的一项定性研究之后,我们制定了一些解决方案,以帮助支持 PBTS 在治疗完成后重新参与日常活动。本研究旨在用更大的样本量来确认和优先考虑这些解决方案。我们使用了混合方法调查,共有 68 名参与者(43 名幸存者,25 名家长,PBTS 的年龄为 15-39 岁)。首先,我们收集了参与者在治疗后健康状况和学校/工作经历方面的信息。然后,我们使用李克特量表和开放式问题要求参与者对之前确定的解决方案进行优先级排序。我们使用描述性和推断性统计来分析数据,并使用定性信息来支持参与者的回答。参与者优先考虑需要健康专业人员进行评估、咨询和随访,以更好地了解他们的治疗后需求,获得帮助以获得适应服务,并获得学校/工作资源的信息。对开放式问题的回答突出了在学校/工作中实施专业人员建议的主要挑战,以及需要及时干预的问题。这些结果将有助于完善 PBTS 的解决方案,并为未来的实施提供关键要素。将这些优先事项转化为行动需要进一步的工作,涉及专业人员和决策者。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f8d7/10527929/20629fb8580e/curroncol-30-00623-g001.jpg

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