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

Abstract

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 carers’ constructions of caregiving during the COVID-19 pandemic: A study on Aotearoa- New Zealand

“…Consistently across literature, LGBTQ+ carers were found to receive low levels of support from professional cancer services (e.g. Brown, 2023;Cloyes et al, 2023;Ganon et al, 2022). LGBTQ+ cancers and people with cancer reported having to become self-advocates to ensure that healthcare professionals were providing appropriate care (Kamen et al, 2019).…”

“…For example, post-COVID-19, an increased number of cancer carers globally reported experiencing clinical levels of psychological distress and increased caregiver burden (Palacio Gonzalez et al, 2021). Furthermore, COVID-19's social distancing rules were found to be influential in carers reporting feelings of isolation and loneliness (Cloyes et al, 2023). Despite this research highlighting the impact of COVID-19 on cancer carers, there is limited to no research done in Aotearoa about how local carers were impacted by COVID-19.…”

“…LGBTQ+ people that received an inclusive approach from healthcare professionals described significantly less feelings of caregiver burden, emotional distress, stress, anxiety, and distrust towards the healthcare system as compared to the other treatment styles. LGBTQ+ people with cancer and cancer carers have reported hiding their identities from healthcare practitioners due to concerns about discrimination in care provision (Cloyes et al, 2023) and fear of healthcare professionals making care assumptions on their behalf that did not match their reality, leading to unwanted friction in the relationship (Waters et al, 2021). Within Aotearoa, a recent thesis by Brown (2023) found that there was a lack of formal guidelines for healthcare professionals to mitigate the conscious or unconscious biases that shape their interactions with the LGBTQ+ community.…”

“…Additionally, language not only shapes how individuals interpret their experiences but how they understand and respond to various issues and social phenomena (Conrad & Barker, 2010). For example, some carers may make meaning of the rules and regulations of COVID-19 as having given them the flexibility to reach a work-life balance (Cloyes et al, 2023). While, in contrast, others might associate the same rules and regulations as facilitating social isolation (Jiang et al, 2022).…”

“…Existing literature (e.g. Masa et al, 2020;Cloyes et al, 2023) found that Māori and members of the LGBTQ+ community have had increased responsibilities in the healthcare system for a notable amount of time. These responsibilities primarily revolved around advocating for culturally-informed and culturally-sensitive care for the person with cancer (Thompson et al, 2020;Dew et al, 2015).…”