TY - JOUR
T1 - The Burden of having to Wonder
T2 - Hospice Caregiving Experiences of LGBTQ+ Cancer Family Caregivers
AU - Cloyes, Kristin G.
AU - Reynaga, Miranda
AU - Vega, Marilisa
AU - Thomas Hebdon, Megan C.
AU - Thompson, Casidee
AU - Rosenkranz, Susan J.
AU - Tay, Djin
AU - Reblin, Maija
AU - Ellington, Lee
N1 - Publisher Copyright:
© The Author(s) 2023.
PY - 2024/1
Y1 - 2024/1
N2 - 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.
AB - 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.
KW - LGBTQ+
KW - caregiver
KW - end of life
KW - hospice
KW - minority stress
KW - sexual and gender minority
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U2 - 10.1177/10499091231159089
DO - 10.1177/10499091231159089
M3 - Article
C2 - 36822189
AN - SCOPUS:85149826136
SN - 1049-9091
VL - 41
SP - 56
EP - 62
JO - American Journal of Hospice and Palliative Medicine
JF - American Journal of Hospice and Palliative Medicine
IS - 1
ER -