Developing an Advance Care Planning Resource for Transgender and Gender-Diverse Adults

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management Pub Date : 2025-04-10 DOI:10.1016/j.jpainsymman.2025.02.035

Lauren Catlett MSN RN CNL

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SATISFICING DEATH: Ageing and end-of-life preparation among transgender older Americans. Sociology of Health & Illness. n/a(n/a). doi:10.1111/1467-9566.13741 (2) Catlett L, Acquaviva KD, Campbell L, et al. End-of-Life Care for Transgender Older Adults. Glob Qual Nurs Res. 2023;10:23333936231161128. doi:10.1177/23333936231161128 (3) Rosa WE, Roberts KE, Braybrook D, et al. Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review. Palliat Med. Published online December 7, 2022:2692163221124426. doi:10.1177/02692163221124426 (4) Sandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334-340. doi:10.1002/1098-240X(200008)23:4 < 334::AID-NUR9>3.0.CO;2-G (5) Leary M, Cacchione PZ, Demiris G, Carthon JMB, Bauermeister JA. An integrative review of human-centered design and design thinking for the creation of health interventions. 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引用次数: 0

Outcomes

1. After participating in this session, attendees should be able to identify at least two ways that advance care planning can help transgender and gender-diverse adults prepare for care in later life or during a serious illness.

2. After participating in this session, attendees should be able to implement at least one strategy to facilitate advance care planning among transgender and gender-diverse adults.

Key Message

A participatory approach was used to develop an advance care planning resource for transgender and gender-diverse (TGD) adults. The resource was designed to support TGD adults in making informed healthcare decisions and communicating with health professionals about their wishes for care in later life or during a serious illness.

Abstract

Transgender and gender-diverse (TGD) adults may face barriers like discrimination and marginalization within the U.S. healthcare system, compromising their access to competent and compassionate care (1). Moreover, few resources directly address issues central to the care of TGD adults in later life or during a serious illness (2). Further study is needed to develop advance care planning (ACP) resources that promote the agency of TGD adults within the healthcare system while centering their knowledge and lived experiences (3).

Objectives

The purpose of this study was to develop an ACP resource for TGD adults using a participatory approach.

Methods

This study was conducted between October 2023 and October 2024 and used qualitative descriptive methodology (4) informed by human-centered design principles (5). During semi-structured interviews, TGD adults aged 50 years old and older generated ideas for ACP resources to address challenges they may face in later life or during a serious illness. Subsequently, participants engaged in virtual group sessions focused on developing an ACP resource. Prototypes of the resource were reviewed iteratively by individuals with relevant professional and lived experience. Data were analyzed using thematic analysis.

Results

Twenty TGD adults from diverse racial and ethnic backgrounds participated in this study. Four themes and 16 ACP resource ideas were identified. One resource idea was developed into a user-friendly electronic healthcare decisions resource for TGD adults designed to facilitate shared decision-making with health professionals involved in their care. Participants envisioned the resource as part of a package of resources to help TGD adults prepare for their healthcare in later life or during a serious illness.

Conclusion

An ACP resource was co-developed by researchers and TGD adults to fill a gap in healthcare resources for this population. Using an innovative approach, this study foregrounds continued development of ACP resources in future community-engaged research.

References

(1) Lampe NM. SATISFICING DEATH: Ageing and end-of-life preparation among transgender older Americans. Sociology of Health & Illness. n/a(n/a). doi:10.1111/1467-9566.13741 (2) Catlett L, Acquaviva KD, Campbell L, et al. End-of-Life Care for Transgender Older Adults. Glob Qual Nurs Res. 2023;10:23333936231161128. doi:10.1177/23333936231161128 (3) Rosa WE, Roberts KE, Braybrook D, et al. Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review. Palliat Med. Published online December 7, 2022:2692163221124426. doi:10.1177/02692163221124426 (4) Sandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334-340. doi:10.1002/1098-240X(200008)23:4 < 334::AID-NUR9>3.0.CO;2-G (5) Leary M, Cacchione PZ, Demiris G, Carthon JMB, Bauermeister JA. An integrative review of human-centered design and design thinking for the creation of health interventions. Nursing Forum. 2022;57(6):1137-1152. doi:10.1111/nuf.12805

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为跨性别和性别多样化的成年人开发一个预先护理计划资源

Outcomes1。参加本课程后，与会者应能够确定至少两种预先护理计划的方法，以帮助跨性别者和性别多样化的成年人为晚年生活或严重疾病期间的护理做好准备。参加本课程后，与会者应能够实施至少一项策略，以促进跨性别和性别多样化的成年人的提前护理计划。主要信息采用参与式方法开发跨性别和性别多样化（TGD）成人的预先护理计划资源。该资源旨在支持TGD成人做出明智的医疗保健决定，并与卫生专业人员沟通他们在晚年或严重疾病期间的护理愿望。摘要跨性别和性别多样化（TGD）的成年人在美国医疗保健系统中可能面临歧视和边缘化等障碍，从而影响他们获得称职和富有同情心的护理(1)。很少有资源直接解决老年或严重疾病期间TGD成人护理的核心问题(2)。需要进一步研究开发advance care planning （ACP）资源，以促进TGD成人在医疗保健系统中的作用，同时以他们的知识和生活经验为中心(3)。目的本研究的目的是使用参与式方法为TGD成人开发ACP资源。本研究于2023年10月至2024年10月进行，采用以人为中心的设计原则(5)，采用定性描述方法(4)。在半结构化访谈中，50岁及以上的TGD成年人对ACP资源产生了想法，以应对他们在晚年生活或严重疾病期间可能面临的挑战。随后，参与者参加了虚拟小组会议，重点是开发ACP资源。资源的原型由具有相关专业和生活经验的个人反复审查。数据采用专题分析进行分析。结果20名不同种族和民族背景的TGD成人参与了本研究。确定了四个主题和16个非加太资源构想。一种资源理念被开发成面向TGD成人的用户友好型电子医疗保健决策资源，旨在促进与参与其护理的卫生专业人员共享决策。与会者设想的资源，作为一揽子资源的一部分，以帮助TGD成人准备他们的医疗保健在以后的生活或在一个严重的疾病。结论研究人员与TGD成人共同开发了ACP资源，填补了TGD人群医疗资源的空白。本研究采用创新的方法，展望了未来社区参与研究中ACP资源的持续开发。参考文献(1)满足死亡：变性美国老年人的老龄化和临终准备。健康社会学；疾病。n / a (n / a)。[2]张建军，张建军，张建军，等。跨性别老年人的临终关怀。《全球护理质量报告》2023；10:23 33936231161128。[3]张建军，张建军，张建军，等。患有严重疾病的LGBTQ+个体的姑息和临终关怀需求、经历和偏好：一项系统的混合方法综述Palliat Med.在线出版，2012年12月7日：2692163221124426。doi:10.1177/02692163221124426护理保健，2000;23(4):334-340。doi: 10.1002 / 1098 - 240 x(200008)一直& lt;[3]李建军，张建军，张建军，等。[3]- 2-G。以人为本的设计和健康干预措施设计思维的综合回顾。护理论坛，2022;57(6):1137-1152。doi: 10.1111 / nuf.12805

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来源期刊

Journal of pain and symptom management 医学-临床神经学

CiteScore

8.90

自引率

6.40%

发文量

821

审稿时长

26 days

期刊介绍： The Journal of Pain and Symptom Management is an internationally respected, peer-reviewed journal and serves an interdisciplinary audience of professionals by providing a forum for the publication of the latest clinical research and best practices related to the relief of illness burden among patients afflicted with serious or life-threatening illness.