PDF(Pubmed)
Abstract：
BACKGROUND: People living with cancer, or carers who are from lesbian, gay, bisexual, transgender, queer, intersex or asexual (LGBTQIA+) communities experience unique information and support needs. Accessible technology-based resources providing tailored support are required to promote wellbeing, however this is a growing area of research requiring further investigation. The purpose of this study was to explore the experiences of healthcare services among people living with cancer, and their carers, who belong to sexual or gender diverse communities (LGBTQIA+), and identify how smartphone applications (apps) could support people from LGBTQIA + communities.
METHODS: This was a qualitative descriptive study where people living with cancer or carers from LGBTQIA + communities participated in phone interviews. Participants were recruited across Australia via social media advertisements, LGBTQIA + medical practices, and cancer advocacy groups. Participants were asked questions about their experiences, and were provided with screenshots of an existing app and asked to provide feedback on content and inclusiveness. Transcripts were coded and codes grouped together to form similar and concepts. Inductive and deductive analyses were used to create themes.
RESULTS: 13 patients (mean age 56 (SD:13)), and three carers (mean age 64 (SD:19)) completed phone interviews. The majority of participants identified their gender as female (patients n = 9, carers 3), and their sexuality as gay or lesbian (patients n = 10, carers n = 3). Four themes were created: (1) navigating disclosure in healthcare, described emotional challenges surrounding disclosure; (2) the power of positive experiences with clinicians, described positive interactions and gaps in care from clinicians; (3) impact of gender and sexuality on informal support, outlined support received from informal network and gaps in support, and; (4) opportunities to increase inclusivity in smartphone apps, generated ideas on how apps can be tailored to meet needs identified.
CONCLUSIONS: Disclosure of gender or sexuality, and interactions with clinicians had the potential to impact participants\' experience of cancer care. Gaps in informal networks pointed at how to better support LGBTQIA + communities, and identified opportunities for inclusion in an app that will be tailored and trialled for this community. Future work should focus on addressing systems-level processes in acknowledging and supporting priority groups affected by cancer.
METHODS: This was a qualitative descriptive study where people living with cancer or carers from LGBTQIA + communities participated in phone interviews. Participants were recruited across Australia via social media advertisements, LGBTQIA + medical practices, and cancer advocacy groups. Participants were asked questions about their experiences, and were provided with screenshots of an existing app and asked to provide feedback on content and inclusiveness. Transcripts were coded and codes grouped together to form similar and concepts. Inductive and deductive analyses were used to create themes.
RESULTS: 13 patients (mean age 56 (SD:13)), and three carers (mean age 64 (SD:19)) completed phone interviews. The majority of participants identified their gender as female (patients n = 9, carers 3), and their sexuality as gay or lesbian (patients n = 10, carers n = 3). Four themes were created: (1) navigating disclosure in healthcare, described emotional challenges surrounding disclosure; (2) the power of positive experiences with clinicians, described positive interactions and gaps in care from clinicians; (3) impact of gender and sexuality on informal support, outlined support received from informal network and gaps in support, and; (4) opportunities to increase inclusivity in smartphone apps, generated ideas on how apps can be tailored to meet needs identified.
CONCLUSIONS: Disclosure of gender or sexuality, and interactions with clinicians had the potential to impact participants\' experience of cancer care. Gaps in informal networks pointed at how to better support LGBTQIA + communities, and identified opportunities for inclusion in an app that will be tailored and trialled for this community. Future work should focus on addressing systems-level processes in acknowledging and supporting priority groups affected by cancer.
摘要：
背景：癌症患者，或来自女同性恋的照顾者，同性恋,双性恋,变性人,酷儿,双性或无性（LGBTQIA+）社区体验独特的信息和支持需求。需要提供定制支持的无障碍技术资源，以促进福祉，然而，这是一个越来越多的研究领域，需要进一步调查。这项研究的目的是探索癌症患者的医疗保健服务经验，和他们的照顾者，属于性或性别多样化社区(LGBTQIA+)的人，并确定智能手机应用程序（应用程序）如何支持来自LGBTQIA+社区的人们。
方法：这是一项定性的描述性研究，来自LGBTQIA+社区的癌症患者或照顾者参与了电话访谈。参与者是通过社交媒体广告在澳大利亚招募的，LGBTQIA+医疗实践，和癌症倡导团体。参与者被问及他们的经历，并提供了现有应用程序的屏幕截图，并要求提供有关内容和包容性的反馈。成绩单被编码，代码被分组在一起形成相似的概念。使用归纳和演绎分析来创建主题。
结果：13例患者（平均年龄56（SD：13）），三名看护者（平均年龄64岁（SD：19））完成了电话采访。大多数参与者确定自己的性别为女性（患者n=9，护理人员3），以及他们作为同性恋或女同性恋的性取向(患者n=10，看护者n=3)。创建了四个主题：(1)导航医疗保健领域的披露，描述了围绕披露的情绪挑战；(2)与临床医生的积极经验的力量，描述了临床医生在护理方面的积极互动和差距；(3)性别和性对非正式支持的影响，概述了从非正式网络获得的支持和支持方面的差距，(4)增加智能手机应用程序包容性的机会，产生了关于如何定制应用程序以满足确定的需求的想法。
结论：披露性别或性行为，与临床医生的互动有可能影响参与者的癌症治疗经验。非正式网络的差距指向如何更好地支持LGBTQIA+社区，并确定了将为该社区量身定制和试用的应用程序中包含的机会。未来的工作应侧重于解决承认和支持受癌症影响的优先群体的系统级过程。
方法：这是一项定性的描述性研究，来自LGBTQIA+社区的癌症患者或照顾者参与了电话访谈。参与者是通过社交媒体广告在澳大利亚招募的，LGBTQIA+医疗实践，和癌症倡导团体。参与者被问及他们的经历，并提供了现有应用程序的屏幕截图，并要求提供有关内容和包容性的反馈。成绩单被编码，代码被分组在一起形成相似的概念。使用归纳和演绎分析来创建主题。
结果：13例患者（平均年龄56（SD：13）），三名看护者（平均年龄64岁（SD：19））完成了电话采访。大多数参与者确定自己的性别为女性（患者n=9，护理人员3），以及他们作为同性恋或女同性恋的性取向(患者n=10，看护者n=3)。创建了四个主题：(1)导航医疗保健领域的披露，描述了围绕披露的情绪挑战；(2)与临床医生的积极经验的力量，描述了临床医生在护理方面的积极互动和差距；(3)性别和性对非正式支持的影响，概述了从非正式网络获得的支持和支持方面的差距，(4)增加智能手机应用程序包容性的机会，产生了关于如何定制应用程序以满足确定的需求的想法。
结论：披露性别或性行为，与临床医生的互动有可能影响参与者的癌症治疗经验。非正式网络的差距指向如何更好地支持LGBTQIA+社区，并确定了将为该社区量身定制和试用的应用程序中包含的机会。未来的工作应侧重于解决承认和支持受癌症影响的优先群体的系统级过程。
