The Burden of having to Wonder: Hospice Caregiving Experiences of LGBTQ+ Cancer Family Caregivers.
Kristin G Cloyes, Miranda Reynaga, Marilisa Vega and 6 others
PMID 36822189WHAT IT FOUND
LGBTQ+ hospice caregivers often could not tell whether rude or awkward provider interactions reflected bias, so they weighed disclosure, stayed alert to protect the patient, and many felt provider communication did not meet their needs.
Key findings
01Caregivers often could not tell whether difficult provider interactions were due to anti-LGBTQ+ bias, their own age or gender, care complications, or provider stress.
02Decisions about whether to disclose LGBTQ+ identity to unfamiliar hospice staff became a persistent risk calculation, and some caregivers avoided being open or seeking needed support.
03Caregivers worried provider bias could harm the dying patient, so they stayed present or rearranged daily life to monitor visits and protect the patient.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The sample did not fully represent the diversity of LGBTQ+ hospice caregivers, including transgender, gender nonbinary, and Black or African American or mixed-race caregivers. The study reports caregivers' perceptions and experiences, not confirmed provider bias or measured patient outcomes. Recruitment was purposive and online, and participants were unpaid caregivers of people receiving home hospice, so findings may not apply to other hospice settings or paid caregivers.
The easy way to misread this
Do not conclude that hospice providers discriminated against these caregivers. The paper reports caregivers' perceptions and uncertainty, not confirmed bias or an outcome measure.