Cancer survivors who identify as LGBTQ reported a lack of access to tailored resources and support groups and fear of discrimination.
The National LGBT Cancer Network recently released the largest-ever survey reporting on the experiences of the LGBTQ cancer survivor community, finding that many of the surveyed participants experienced more difficulties in finding welcoming care compared with their straight and cisgender counterparts. In addition, many described difficulties in finding a social support community and tailored resources.
“One of the things that is important to us, and a lot of this is that we need to make sure that when we go through cancer care – it's devastating enough to get a diagnosis of cancer – that you do not additionally have more challenges, specifically because you're queer,” said Scout, Executive Director of the National LGBT Cancer Network, in an interview with CURE®.
The report, “Out: The National Cancer Survey,” was based on findings from 2,728 survey respondents across the U.S. The voluntary and anonymous web-based survey was promoted across social media outlets and administered over the course of seven months. Participants were age 18 or older, identified as LGBTQ, lived in the U.S. and were previously diagnosed with cancer.
Among the participants, 3% felt that the environment in which they received treatment was unwelcoming to them. However, 5% expressed that after disclosing their LGBTQ identity, their environment was more unwelcoming.
Notably, 88% of the participants reported that there were not any environmental indications of welcoming care for the LGBTQ community at the location where they received cancer treatment.
“While we're delighted that people can get to welcoming care, you shouldn't need to take a long journey to get there, and it should be a more equitable across all the different populations within the queer community,” Scout said. He added that those belonging to an underserved population in the queer community – such as people who are transgender, gender non-conforming and/or Black, Indigenous and people of color (BIPOC) – had more difficulty finding a provider with welcoming and culturally competent care.
Indicators of a welcoming health care provider could include environmental indicators such as rainbow flags, affirming posters, flyers or leaflets, according to the survey. Scout added that it’s also important for health care providers to check their implicit biases when delivering care, offer clear and easy-to-find resources for the LGBTQ community, ensure that staff members will provide respectful interactions with patients and consider additional cancer risks that members of the LGBTQ community may have.
Another large takeaway from the surveys was that many LGBTQ cancer survivors emphasized the importance of having a supportive social network. While many of those surveyed reported feeling supported by their loved ones, 71% reported that they had never received social support specific to LGBTQ cancer survivors – whether it be from peer-to-peer direct connection, a professional or a peer group.
“Oftentimes, we've had to form (social support) differently than the general population, because we're not always accepted by our families of birth,” Scout said. “As we create those families around us, that can be a great source of strength for us. But we are still struggling to get them acknowledged and accepted in the cancer world, when it's so important to bring those social support people with you.”
Some survey participants did not bring their partners with them to medical appointments out of fear of received discriminatory treatment, he added. “Imagine the idea of going through chemo and leaving your life partner at home, because you're afraid of how the people will treat you. That's a horrific situation.”
A large part of survivorship that goes hand-in-hand with social support is access to adequate survivorship resources. While 83% of participants reported that they were able to find helpful resources about their cancer, only 13% reported finding access to helpful information about being an LGBTQ individual with cancer. Additionally, 86% of patients reported that they did not receive any guidance from their health care providers on tailored resources. Scout added that some participants also feared they would not be welcome at mainstream support groups.
“That's also something that can really be fixed really easily,” he explained. “…You don't need to create the million versions of these tailored resources. It really is something where one set of them can exist nationally, and then as long as the providers know how to access them, that is a solution to this whole issue.”
If more health care providers collected data on LGBTQ patients, it could help in a number of ways, Scout explained. For one thing, it gives providers the opportunity to share LGBTQ-tailored resources with their patients – resources for support groups and information on life post-cancer, like the ones provided by the National LGBT Cancer Network. Secondly, it will help progress knowledge on cancer rates in the LGBTQ community, which can lead to proposals for research funding on disparities and other issues.
The National LGBT Cancer Network plans to use more of the surveyed information to inform follow-up reports on the BIPOC LGBTQ survivor community, gender expansive survivors, mental health, social support and access to screenings.
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