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“癌症改变了一切,但它让人不禁思考——我还足够好吗?”针对青少年和青年癌症患者开展系列焦点小组讨论,以了解他们在癌症以及性与生殖健康方面的经历。

"Cancer changes everything, but it makes you wonder-am I still enough?" serial focus groups with adolescent and young adult cancer patients to understand experiences with cancer and sexual and reproductive health.

作者信息

Oveisi Niki, Cheng Vicki, Taylor Dani, Kang Preet, Brotto Lori A, Peacock Stuart, McTaggart-Cowan Helen, Hanley Gillian E, Gill Sharlene, Rayar Meera, Srikanthan Amirrtha, Barnes Mikaela, Bechthold Haydn, Jansen Norman, De Vera Mary A

机构信息

Faculty of Pharmaceutical Sciences, University of British Columbia, 2405 Wesbrook Mall, Vancouver, BC, V6T 1Z3, Canada.

Collaboration for Outcomes Research and Evaluation, Vancouver, BC, Canada.

出版信息

BMC Cancer. 2025 Aug 1;25(1):1253. doi: 10.1186/s12885-025-14561-7.

DOI:10.1186/s12885-025-14561-7
PMID:40751145
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12315403/
Abstract

BACKGROUND

The impacts of cancer and its treatment on sexual and reproductive health among adolescents and young adults (AYA, ages 15–39) are not understood. We conducted a patient-oriented, novel serial focus group study to explore the sexual and reproductive health experiences of AYA cancer patients during and beyond treatment.

METHODS

Participants (≥ 18 years) who were diagnosed with cancer between 15 and 39 years and reside in Canada were assigned to respective focus group cohorts based on shared characteristics (e.g., gender, cancer stage). Each cohort participated in three serial focus groups that emulated support groups, fostering a sense of community. Focus groups were co-facilitated with a patient research partner (PRP) and guided by a topic guide co-created with PRPs. Framework analysis involving steps of familiarizing with transcripts, identifying thematic framework, indexing data sections by theme, extracting and organizing data into charts, and analyzing charts, were applied to transcripts.

RESULTS

Altogether, 48 AYA cancer patients, divided into 8 cohorts, participated in a total of 24 focus groups. Cohorts included: cis-gender women ( = 10), 2SLGBTQIA+ ( = 7), Black, Indigenous, and People of Colour (BIPOC;  = 7), cis-gender men ( = 6), breast cancer ( = 6), pelvic cancer ( = 6), diagnosed during adolescence (ages 15 to 19;  = 4), and stage 4 ( = 3) (one individual participated in two cohorts). Cohorts had representation of nonbinary and gender fluid participants ( = 4), non-heterosexual sexual orientation ( = 14), and racial diversity ( = 12). The final framework encompassed two thematic areas broadly categorized as patients’ experiences (“what is happening to them”) and their responses (“how they are reacting or acting”). The first thematic area (three themes), focused on the direct effects of cancer and its treatment on patients’ sexual and reproductive health. The second thematic area (three themes), looks at the external impacts, capturing how cancer affects aspects of patients’ sexual and reproductive health, including relationships, societal expectations, and community support.

CONCLUSION

Uncovering the profound and complex personal and interpersonal impacts of AYA cancer on sexual and reproductive health, our study has important implications for informing appropriate and affirming support.

SUPPLEMENTARY INFORMATION

The online version contains supplementary material available at 10.1186/s12885-025-14561-7.

摘要

背景

癌症及其治疗对青少年和青年成人(AYA,年龄在15至39岁之间)性健康和生殖健康的影响尚不清楚。我们开展了一项以患者为导向的新型系列焦点小组研究,以探索AYA癌症患者在治疗期间及治疗后的性健康和生殖健康经历。

方法

年龄在15至39岁之间被诊断患有癌症且居住在加拿大的参与者(≥18岁)根据共同特征(如性别、癌症分期)被分配到各自的焦点小组队列。每个队列参加三个模拟支持小组的系列焦点小组,营造一种社区感。焦点小组由一名患者研究伙伴(PRP)共同主持,并由与PRP共同制定的主题指南指导。对转录本应用框架分析,包括熟悉转录本、确定主题框架、按主题为数据部分编索引、提取数据并整理成图表以及分析图表等步骤。

结果

共有48名AYA癌症患者,分为8个队列,共参加了24个焦点小组。队列包括:顺性别女性(=10)、2SLGBTQIA+(=7)、黑人、原住民和有色人种(BIPOC;=7)、顺性别男性(=6)、乳腺癌(=6)、盆腔癌(=6)、青春期(15至19岁)确诊(=4)以及IV期(=3)(有一人参加了两个队列)。队列中有非二元性别和性别流动参与者(=4)、非异性恋性取向(=14)以及种族多样性(=12)的代表。最终框架涵盖两个主题领域,大致分为患者的经历(“他们身上发生了什么”)和他们的反应(“他们如何反应或行动”)。第一个主题领域(三个主题)关注癌症及其治疗对患者性健康和生殖健康的直接影响。第二个主题领域(三个主题)着眼于外部影响,捕捉癌症如何影响患者性健康和生殖健康的各个方面,包括人际关系、社会期望和社区支持。

结论

我们的研究揭示了AYA癌症对性健康和生殖健康深刻而复杂的个人及人际影响,对提供适当和肯定性的支持具有重要意义。

补充信息

在线版本包含可在10.1186/s12885-025-14561-7获取的补充材料。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a0d8/12315403/cef82611b18b/12885_2025_14561_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a0d8/12315403/658f1aa27b77/12885_2025_14561_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a0d8/12315403/cef82611b18b/12885_2025_14561_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a0d8/12315403/658f1aa27b77/12885_2025_14561_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a0d8/12315403/cef82611b18b/12885_2025_14561_Fig2_HTML.jpg

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