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身份认同被打乱、隐形和不稳定的支持:一项 LGBTQI 青少年和青年癌症患者的混合方法研究。

Disrupted identities, invisibility and precarious support: a mixed methods study of LGBTQI adolescents and young adults with cancer.

机构信息

Translational Health Research Institute, School of Medicine, Western Sydney University, Sydney, Australia.

出版信息

BMC Public Health. 2023 Sep 21;23(1):1837. doi: 10.1186/s12889-023-16739-9.


DOI:10.1186/s12889-023-16739-9
PMID:37735365
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10512535/
Abstract

BACKGROUND: Lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) adolescents and young adults (AYAs) with cancer report higher levels of depression and anxiety and lower health related quality of life than non-LGBTQI AYAs with cancer, and LGBTQI adults with cancer. This mixed methods study examined LGBTQI AYAs' experiences of cancer and cancer care, to understand these health disparities. METHODS: Online surveys were completed by 95 LGBTQI AYAs with cancer (age 16-39 years); 19 AYAs took part in a one-to-one semi structured interview. Reflexive thematic analysis of interviews and open-ended survey responses facilitated in-depth examination of subjective experiences; descriptive statistics performed on individual closed-ended survey items identified the percentage of AYAs reporting experiences identified in the qualitative analysis. RESULTS: 63% of AYAs reported high or very high distress on the K10. Three themes were identified in the qualitative analysis: 1) "Identities in flux", included subthemes "Cancer disrupts developing identities, and involvement with LGBTQI communities"; "Internalized prejudice impacts identities"; and "Cancer facilitates identities and embodiment". 2) "Invisibility in cancer care", included subthemes "Navigating disclosure amongst cis-heteronormative assumptions", "Discrimination and paternalistic cancer care" and " Cis-heteronormativity within cancer information". 3) "Precarious social support for LGBTQI AYAs with cancer", included subthemes " Social support during cancer is helpful for LGBTQI AYAs", "LGBTQI AYAs navigate limited support", and" Finding cancer peer support networks is difficult for LGBTQI AYAs". CONCLUSIONS: LGBTQI AYAs with cancer experience psychosocial vulnerabilities related to identity development, experiences of care, and social support networks. These factors likely contribute to their previously evidenced elevated risk of distress, relative to both non-LGBTQI AYAs and LGBTQI older adults. AYAs affected by cancer may require additional, tailored supportive care, including targeted information resources, LGBTQI AYA specific cancer support groups, or partnerships and referrals to LGBTQI community organisations. Additionally, it is evident that health care professionals and cancer services have much work to do in ensuring LGBTQI AYAs receive affirming and appropriate care across paediatric and adult clinical settings. They must move beyond assuming all patients are cisgender, heterosexual and do not have intersex variations unless otherwise stated; work to signal inclusivity and facilitate disclosure; and be able to respond appropriately with tailored information and care, which is inclusive of LGBTQI partners, chosen family, and support systems.

摘要

背景:与非 LGBTQI 癌症青少年和年轻人(AYAs)相比,患有癌症的 LGBTQI 青少年和年轻人(AYAs)报告更高水平的抑郁和焦虑,以及更低的健康相关生活质量,而 LGBTQI 癌症成年人也是如此。这项混合方法研究检查了 LGBTQI AYA 患癌症和癌症护理的经历,以了解这些健康差距。

方法:95 名 LGBTQI 癌症青少年和年轻人(16-39 岁)完成了在线调查;19 名 AYA 参加了一对一的半结构化访谈。对访谈和开放式调查回复的反思性主题分析促进了对主观经验的深入检查;对个别封闭式调查项目进行的描述性统计确定了在定性分析中报告的 AYA 体验的百分比。

结果:63%的 AYA 在 K10 上报告了高或非常高的困扰。定性分析中确定了三个主题:1)“身份变化”,包括子主题“癌症扰乱了正在发展的身份,并与 LGBTQI 社区有关联”;“内隐偏见影响身份”;和“癌症促进身份和体现”。2)“癌症护理中的隐形”,包括子主题“在顺式异性恋假设中披露”;“歧视和家长式癌症护理”;以及“癌症信息中的顺式异性恋”。3)“LGBTQI 癌症青少年和年轻人的不稳定社会支持”,包括子主题“癌症期间的社会支持对 LGBTQI AYA 有帮助”;“LGBTQI AYA 会遇到有限的支持”;“LGBTQI AYA 很难找到癌症同龄人支持网络”。

结论:患有癌症的 LGBTQI AYA 经历与身份发展、护理体验和社会支持网络相关的心理社会脆弱性。这些因素可能导致他们以前表现出的困扰风险高于非 LGBTQI AYA 和 LGBTQI 老年人。受癌症影响的 AYA 可能需要额外的、量身定制的支持性护理,包括有针对性的信息资源、LGBTQI AYA 特定的癌症支持小组,或与 LGBTQI 社区组织的合作和转介。此外,很明显,医疗保健专业人员和癌症服务机构在确保 LGBTQI AYA 在儿科和成人临床环境中获得认可和适当的护理方面还有很多工作要做。他们必须超越假设所有患者都是顺性别、异性恋且没有间性变异,除非另有说明;努力发出包容信号并促进披露;并能够通过提供量身定制的信息和护理做出适当回应,其中包括 LGBTQI 伴侣、选择的家人和支持系统。

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[1]
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引用本文的文献

[1]
Engaging Under-Represented Adolescents and Young Adults in Cancer Research: A Qualitative Exploration of Lived Experiences and Engagement Strategies.

Cancer Med. 2025-8

[2]
Bridging the Gap: Embedding Psychosocial Oncology Research into Comprehensive Cancer Care for Children and Young People.

Cancers (Basel). 2025-6-24

[3]
A Content Analysis of Cancer-Related Changes in Perceptions of Self, Relationships, and Health Among LGBTQI+ Cancer Survivors Across the Life Course: Findings From OUT: The National Cancer Survey.

Psychooncology. 2024-12

[4]
Provider preparedness to care for sexual and gender minority adolescent and young adult cancer patients: A scoping review.

PEC Innov. 2024-9-13

[5]
"A sweating moment": impact of disclosure in cancer care on LGBTQI patient satisfaction.

J Cancer Surviv. 2024-9-21

[6]
"I've had constant fears that I'll get cancer": the construction and experience of medical intervention on intersex bodies to reduce cancer risk.

Int J Qual Stud Health Well-being. 2024-12

[7]
A Needs Assessment Approach for Adolescent and Young Adult Sexual and Gender Diverse Cancer Survivors.

Int J Environ Res Public Health. 2024-3-30

[8]
"Queer people are excellent caregivers, but we're stretched so very thin": Psychosocial wellbeing and impacts of caregiving among LGBTQI cancer carers.

BMC Cancer. 2024-1-5

[9]
Editorial: Cancer prevention, treatment and survivorship in the LGBTQIA community.

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本文引用的文献

[1]
"I've had constant fears that I'll get cancer": the construction and experience of medical intervention on intersex bodies to reduce cancer risk.

Int J Qual Stud Health Well-being. 2024-12

[2]
"Queer Insights": Considerations and Challenges for Assessing Sex, Gender Identity, and Sexual Orientation in Oncofertility Research.

Ann LGBTQ Public Popul Health. 2022-6

[3]
Almost invisible: A review of inclusion of LGBTQI people with cancer in online patient information resources.

Patient Educ Couns. 2023-9

[4]
"What if I die and no one had ever romantically loved me?": sexual well-being in a sample of YA cancer survivors.

J Cancer Surviv. 2024-2

[5]
Reinforcing or Disrupting Gender Affirmation: The Impact of Cancer on Transgender Embodiment and Identity.

Arch Sex Behav. 2023-4

[6]
LGBTQI cancer patients' quality of life and distress: A comparison by gender, sexuality, age, cancer type and geographical remoteness.

Front Oncol. 2022-9-20

[7]
Knowing to Ask and Feeling Safe to Tell - Understanding the Influences of HCP-Patient Interactions in Cancer Care for LGBTQ+ Children and Young People.

Front Oncol. 2022-6-24

[8]
"Surviving Discrimination by Pulling Together": LGBTQI Cancer Patient and Carer Experiences of Minority Stress and Social Support.

Front Oncol. 2022-6-24

[9]
Financial Burden and Mental Health Among LGBTQIA+ Adolescent and Young Adult Cancer Survivors During the COVID-19 Pandemic.

Front Oncol. 2022-6-16

[10]
"No one size fits all" A Multi-Method Survey of Oncology Allied Health Professionals Experiences with Lesbian, Gay, Bisexual, Transgender/Queer Questioning Adolescent, and Young Adult Patients with Cancer and Reproductive and Sexual Health".

J Adolesc Young Adult Oncol. 2023-4

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