Table 4 Qualitative Themes and Quotes

Identity on the sidelines: LGBTQI sexuality and gender pushed aside during cancer caregiving 

a. Well, at the time, I thought it wasn’t a priority for me. The focus is certainly on my partner and her wellbeing, her health. So whilst, you know, being a queer couple was out there straightaway, it also took a backseat. It was a very interesting dynamic because, regardless of whether or not the practitioner treated me in a different way, I always gotta make sure that her health and wellbeing was taken care of first and foremost. [Cameron, 38, non-binary, queer, caring for partner with breast cancer]

b. That I felt that I had to pretend to be someone else was upsetting and stressful, like it was living in a disguise. I didn’t need the extra stress. [Cody, 38, non-binary queer, caring for grandmother with bowel cancer]

Fear of being shut out: rejection and exclusion of LGBTQI cancer carers

c. I am worried about this. My partner isn’t out with all her family and there is some avoidance about saying what she really wants. I know I’m in her Will but I’m not sure what it says. I feel like I have a world of pain coming if she does die. It will be unbearable. [Survey, 38, lesbian, caring for partner with brain cancer]

d. We are a lesbian couple, not legally married. Thoughts about the legalities of not being legally married weighed on me, hoping that I never got ‘shut out’ of my partner’s care, [or prevented from] being with her, or being able to keep her in our home. [Survey, 56, lesbian, caring for partner with brain cancer]

e. I had intense trauma as the gay partner of a cancer sufferer from her biological family, who wouldn’t recognize me or my role as her partner. [Survey, 59, cared for partner with ovarian cancer]

f. My partner was closeted. She was also close to her religious family. Being her carer and navigating her family was incredibly difficult. [Survey, 59, queer, caring for partner with ovarian cancer]

g. There is always an assumption that I’m her sister. Normally the first thing the nurses ask, “Is this your sister?” It was almost every time there was a change in shift until they got to know us, that’s nearly always the question, “Who’s your sister?” [Faye, 50, lesbian, caring for partner with leukemia]

h. When they said to us, “Get your affairs in order”, we got the power of attorney stuff sorted. We may not have done that if my partner was confident that I could make the decisions for her. If we were a heterosexual couple, then that wouldn’t have been an issue for us. [Faye, 50, lesbian, caring for partner with leukemia]

i. Being married I had the legal rights. Plus we had taken care of all legal paperwork years ago. [Survey, 62, gay, cared for partner with head/ neck cancer]

j. I married my partner after she was diagnosed with a brain tumor and I believe the term wife gave me a lot more authority in a medical setting. [Survey, 61, lesbian, caring for wife with brain cancer]

“It made me feel very alone”: Lack of support for LGBTQI caregivers

k. Friends that had known us for years disappeared when he got sick. No one had the time to visit the funeral home. Not one word of encouragement. I quite frankly hate the gay community locally. They are only interested in gay pride and the bars. [Survey, 62, gay, cared for partner with head/ neck cancer]

l. It’s devastating when you find that the people you thought were your supports become unreliable because of the relentless nature of caring, or because of their own grief. [Survey, 53, lesbian, caring for partner with ovarian cancer]

m. I’ve pulled away from LGBTIQA+ specific events mostly due to being utterly exhausted still and not having the emotional energy to connect with others in this space. [Survey, 38, queer, non-binary, caring for partner with breast cancer]

n. I have less emotional energy and time for others because I and my partner have so much to deal with. [Survey, 53, lesbian, caring for partner with breast cancer]

o. Between COVID-19, working from home, my partner’s needs, my own mental health needs I am really feeling very alone and lost. [Survey, 39, queer, non-binary, cared for grandmother with brain cancer]

p. I felt more isolated from the LGBTIQ+ community while I was a carer, I did not feel supported and also stopped interacting with this part of the community. [Survey, 38, non-binary queer, caring for grandmother with bowel cancer]

q. I found a major lack of information and support for same-sex couples. [Survey, 47, lesbian, caring for partner with breast cancer]

“Closer” and “stronger” relationships due to a culture of mutual caregiving

r. It was a gift to be able to support her, provide a calm, caring environment. To take on the practical things she could focus on being with people. [Survey, 52, lesbian, caring for partner with lung cancer]

s. Of course it’s hard work, but you have to care for the person you love [Survey, 29, bisexual man, caring for mother with ovarian cancer]

t. Some of my friendships are much closer because they were excellent emotional support.” [Survey, 31, bisexual woman, caring for mother with breast cancer]