The Burden of having to Wonder: Hospice Caregiving Experiences of LGBTQ+ Cancer Family Caregivers.

BACKGROUND AND OBJECTIVES: 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. RESEARCH DESIGN AND METHODS: 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. RESULTS: 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. DISCUSSION AND IMPLICATIONS: 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.

Cancer Hospice Caregivers' Self-care Behaviors: The Role of Caregiving Tasks, Burden, and Mental Health.

Cancer hospice family caregivers provide intensive support for patients at the end of life, sometimes at the expense of self-care. This secondary analysis examined the role of caregiving burden, activities of daily living, and mental health on self-care behaviors among cancer hospice family caregivers. Logistic regression models were adjusted for sociodemographic and caregiver characteristics, and model fit was evaluated with Hosmer-Lemeshow tests. Participants (N = 86) were mostly women (n = 62, 72.09%), White (n = 76, 88.37%), and spousal caregivers (n = 44, 51.16%). Almost half reported not getting enough rest (47.67%), time to exercise (47.67%), or time to slow down and rest when feeling ill (46.51%). Caregivers with better mental health reported being more likely to have enough time to exercise (adjusted odds ratio [OR adj ], 1.15, [1.05, 1.26]; P = .004), rest (OR adj , 1.11, [1.01, 1.22]; P = .031), and slow down when ill (OR adj , 1.16, [1.04, 1.30]; P = .010). Controlling for sociodemographic and caregiver characteristics, men caregivers had 88% lower odds of being able to rest when ill (OR adj , 0.12, [0.03, 0.52]; P = .005) compared with women. Number of care tasks, not caregiving burden, was associated with self-care behaviors. Findings provide a preliminary understanding of factors related to caregiver self-care and have implications for increased assessment of caregiver mental health and self-care needs to better support family-oriented hospice care.

"We Treat Everyone Equally": Hospice Care Team Members' Language Use Regarding Sexual and Gender Minority Patients and Caregivers.

PURPOSE: The way Hospice Care Team (HCT) members talk about patients and caregivers reflects personal attitudes and experiences, training, and broader social and cultural discourse. This secondary analysis examined the framing language professional hospice care providers used when discussing end-of-life care for LGBTQ+ patients and caregivers. METHODS: Discourse analysis and frame theory informed a secondary, qualitative analysis of focus group data collected with hospice providers (N = 48) in 3 U.S. states regarding their knowledge, experience, and opinions about end-of-life care for LGBTQ+ patients and caregivers. RESULTS: The following four (often overlapping) frames were identified (1) A normalizing frame which dismissed differences between LGBTQ+ patients/caregivers and non-LGBTQ+ individuals in general, and especially at end-of-life (2) A homogenizing frame which cast being LGBTQ+ as an intrinsic, universal characteristic and did not differentiate between different groups, specifically conflating orientation and gender identity (3) A pathologizing frame in which providers related being LGBTQ+ to disease conditions or illegal behaviors (4) An individualizing frame which focused on between-group differences, acknowledged variation, and emphasized the importance of historical context for personalized care. CONCLUSION: Examination of discursive frames used by providers enhances understanding of how social and cultural influences, along with training and experience, shape how HCT members approach working with LGBTQ+ patients and families, and illuminates areas where additional education and training are needed. Our findings support the need for ongoing efforts to improve HCT members' knowledge and skill regarding the needs of LGBTQ+ patients and families within the context of hospice and end-of-life care.