Advance Care Planning Experiences Among Sexual and Gender Minority People.
Advance Care Planning Experiences Among Sexual and Gender Minority People.
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DOI：
10.1001/jamanetworkopen.2022.22993
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发表时间：
2022-07-01
影响因子：
13.8
通讯作者：
Candrian, Carey
中科院分区：
文献类型：
--
作者：
Reich, Amanda Jane;Perez, Stephen;Fleming, Julia;Gazarian, Priscilla;Manful, Adoma;Ladin, Keren;Tjia, Jennifer;Semco, Robert;Prigerson, Holly;Weissman, Joel S.;Candrian, Carey
推进性和性别少数（SGM）人群护理规划讨论的障碍和促进因素是什么？在这项对201名SGM人和402名非SGM人的定性研究中，调查参与者报告了医疗保健方面的歧视经历，访谈参与者描述了他们的偏好是否会得到支持的担忧。研究结果表明，在医疗保健系统中的歧视是一个重要的障碍，以推进护理计划的SGM人。这项定性研究的目的是增加性和性别少数的个人之间的提前护理规划的障碍和促进因素的理解。提前护理计划（ACP）可以促进以患者为中心的临终（EOL）护理，旨在确保医疗与患者的价值观保持一致。与异性恋、顺性别者相比，性和性别少数群体（SGM）在卫生保健环境中面临更大的歧视，但尚不清楚这种歧视是否发生在ACP中，以及它如何影响SGM人的ACP经历。增加对SGM个体面临的ACP障碍和促进因素的理解。这项混合方法的ACP国家研究包括对自我确定的SGM和非SGM参与者进行电话调查，这些参与者是从SSRS的一个更大的综合国家小组中抽取的具有全国代表性的样本。定性访谈进行了一个子集的调查参与者谁确定为SGM。数据收集时间为2020年10月至2021年3月。自称SGM。该调查包括经验证的ACP参与调查中的4个项目，经过调整以记录歧视经历。访谈询问了参与者对ACP的经验，包括任命医疗决策者，分享偏好，以及更广泛的医疗保健系统内的经验。共有603名成年人参与了调查，其中201名SGM个体（平均[SD]年龄，45.7 [18.7]岁; 101 [50.2%]女性; 22 [10.9%]黑人、37 [18.4%]西班牙裔和140 [69.7%]白色个体）和402名非SGM个体（平均[SD]年龄，53.7 [19.2]岁; 199 [49.5%]例女性; 35 [8.7%]例黑人，41 [10.2%]例西班牙裔和324 [80.6%]例白色个体）。至于没有完成ACP的原因，与非SGM受访者相比，SGM受访者更可能说“我不认为有必要”（72 [73.5%]对131 [57.2%]，P = 0.006）和“我觉得受到他人歧视”（12 [12.2%]对6 [2.6%]，P <0.001）。在SGM参与者中完成的25次访谈中，确定了3个主要主题：歧视的恐惧和经历如何影响临床医生的选择以及是否披露SGM身份;对EOL偏好和医疗决策者是否会得到支持的担忧;以及在临床环境之外讨论EOL决策和价值观的偏好。这项研究发现，害怕透露性取向或性别认同信息和歧视是ACP在临床环境中进行SGM的重要障碍，但许多SGM人和医疗决策者之间仍然存在偏好和价值观的讨论。更多的SGM特定的以患者为中心的护理可能会更好地支持医疗保健系统内的这些讨论。此外，卫生系统可以通过支持临床医生敏感性培训，包括关于文件和要求的指导，促进更好的参与。
What are the barriers and facilitators to advance care planning discussions for sexual and gender minority (SGM) people? In this qualitative study of 201 SGM people and 402 non-SGM people, survey participants reported experiences of discrimination in health care, and interview participants described concerns regarding whether their preferences would be supported. The findings suggest that discrimination in the health care system is an important barrier to advance care planning for SGM people. This qualitative study aims to increase understanding of barriers and facilitators of advance care planning among sexual and gender minority individuals. Advance care planning (ACP) can promote patient-centered end-of-life (EOL) care and is intended to ensure that medical treatments are aligned with patient’s values. Sexual and gender minority (SGM) people face greater discrimination in health care settings compared with heterosexual, cisgender people, but it is unknown whether such discrimination occurs in ACP and how it might affect the ACP experiences of SGM people. To increase understanding of barriers and facilitators of ACP facing SGM individuals. This mixed-methods national study of ACP included a telephone survey of self-identified SGM and non-SGM participants in a nationally representative sample drawn from a larger omnibus national panel by SSRS. Qualitative interviews were conducted with a subset of survey participants who identified as SGM. Data were collected from October 2020 to March 2021. Self-identified SGM. The survey included 4 items from the validated ACP Engagement Survey, adapted to capture experiences of discrimination. Interviews asked about participants’ experiences with ACP, including the appointment of medical decision-makers, sharing preferences, and experiences within the health care system more broadly. A total of 603 adults participated in the survey, with 201 SGM individuals (mean [SD] age, 45.7 [18.7] years; 101 [50.2%] female; 22 [10.9%] Black, 37 [18.4%] Hispanic, and 140 [69.7%] White individuals) and 402 non-SGM individuals (mean [SD] age, 53.7 [19.2] years; 199 [49.5%] female; 35 [8.7%] Black, 41 [10.2%] Hispanic, and 324 [80.6%] White individuals). Regarding reasons for not completing ACP, SGM respondents, compared with non-SGM respondents, were more likely to say “I don’t see the need” (72 [73.5%] vs 131 [57.2%], P = .006) and “I feel discriminated against by others” (12 [12.2%] vs 6 [2.6%], P < .001). Of 25 completed interviews among SGM participants, 3 main themes were identified: how fear and experiences of discrimination affect selection of clinicians and whether to disclose SGM identity; concerns about whether EOL preferences and medical decision-makers would be supported; and a preference to discuss EOL decisions and values outside of clinical settings. This study found that fear of disclosing sexual orientation or gender identity information and discrimination are important barriers to ACP for SGM in clinical settings, but discussions of preferences and values still occur between many SGM people and medical decision-makers. More SGM-specific patient-centered care might better support these discussions within the health care system. Furthermore, health systems can facilitate improved engagement by supporting clinician sensitivity training, including guidance on documentation and requirements.
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影响因子：
4.7
作者：
Kiger, Michelle E.;Varpio, Lara
通讯作者：
Varpio, Lara
影响因子：
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作者：
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DOI：
10.1001/jama.2021.16430
发表时间：
2021-10-26
期刊：
JAMA
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作者：
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通讯作者：
Cartwright, Colleen
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作者：
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通讯作者：
Chamberland, Line