Cloyes Kristin G, Reynaga Miranda, Vega Marilisa, Thomas Hebdon Megan C, Thompson Casidee, Rosenkranz Susan J, Tay Djin, Reblin Maija, Ellington Lee
School of Nursing, Oregon Health and Science University, Portland, OR, USA.
Psychology, University of Michigan College of Literature Science and the Arts, Ann Arbor, MI, USA.
Am J Hosp Palliat Care. 2024 Jan;41(1):56-62. doi: 10.1177/10499091231159089. Epub 2023 Feb 23.
LGBTQ+ people are more likely to be caregivers for family and friends with life-limiting illnesses than non-LGBTQ+ people. LGBTQ+ caregivers may also experience stigma, bias, and discrimination, in addition to caregiving stress. Yet few studies have elicited LGBTQ+ family caregivers' perspectives on their end-of-life (EOL) experiences of home hospice.
We conducted semi-structured interviews with LGBTQ+ family caregivers of home hospice patients (N = 20). Following an interpretive descriptive approach, interview data were audio recorded, transcribed, and iteratively coded, and themes were developed and synthesized.
The burden of having to wonder expressed caregivers' uncertainty and concern about whether their negative experiences were common to all EOL caregivers or stemmed from cultural stigma and provider bias. Participants described how invisibility vs. risks of disclosure, anticipatory anxiety, perceived microaggressions, and protective vigilance increased stress and complicated caregiver-provider communication. Navigating EOL universalities vs. minority realities depicted underlying tensions between commonly assumed universalities of EOL caregiving and LGBTQ+-specific experiences. Providers' discomfort, awkward communication, lack of access to culturally competent EOL support resources, and broader structural and cultural discrimination eroded their sense of connectedness and safety. Together, these themes characterized the impact of minority stress at EOL.
Our findings suggest that LGBTQ+ hospice caregivers are at risk for minority stress in addition to more common sources of EOL caregiving pressures and thus have specific support and communication needs. Providers must understand this to deliver effective EOL care for all families.
与非 LGBTQ+ 人群相比，LGBTQ+ 人群更有可能成为患有危及生命疾病的家人和朋友的照顾者。除了照顾压力外，LGBTQ+ 照顾者还可能遭受耻辱、偏见和歧视。然而，很少有研究探讨 LGBTQ+ 家庭照顾者对其居家临终关怀的临终体验的看法。
我们对居家临终关怀患者的 LGBTQ+ 家庭照顾者（N = 20）进行了半结构化访谈。采用解释性描述方法，对访谈数据进行录音、转录和反复编码，形成并综合主题。
不得不疑惑的负担表达了照顾者对其负面经历是所有临终照顾者共有的，还是源于文化耻辱和提供者偏见的不确定性和担忧。参与者描述了隐形与披露风险、预期焦虑、感知到的微侵犯以及保护性警惕如何增加压力并使照顾者与提供者之间的沟通变得复杂。应对临终普遍性与少数群体现实描绘了临终照顾普遍假设的普遍性与 LGBTQ+ 特定经历之间的潜在紧张关系。提供者的不适、尴尬的沟通、缺乏获得具有文化能力的临终支持资源的机会，以及更广泛的结构和文化歧视侵蚀了他们的联系感和安全感。这些主题共同刻画了临终时少数群体压力的影响。
我们的研究结果表明，LGBTQ+ 临终关怀照顾者除了面临更常见的临终照顾压力来源外，还面临少数群体压力的风险，因此有特定的支持和沟通需求。提供者必须了解这一点，以便为所有家庭提供有效的临终关怀。
