Research in LGBT patients’ experiences of cancer care We are a partnership of two hospitals and a university who want to promote LGBT equality in cancer care. Because there is very little research, a community pilot study of 17 LGB cancer patients was conducted in 2015 which highlighted both positive and negative experiences. These are some examples of the experiences they talked with us about:
“the first thought was I was going to tell them I’m gay, and then the second was …is it going to affect the treatment and what I’m going to get” (Nathan). Karl (during the pre-assessment): “I said it’s my partner, my male partner. Male nurse: Yes your wife. Karl: I said no, my male partner”. “One of the things that did strike me, I found complete acceptance, I was very open about my sexuality but that’s because that’s me anyway.” (Linda). “I think that’s one of the things that we [sexual minorities] do quite well, you fill the gap somewhere else don’t you because you don’t rely on it anywhere” (Miranda).
Both men and women talked about good and bad experiences. Building on these findings, we want to do the first study (of any condition apart from HIV/AIDS) in hospitals involving LGBT patients. We have asked a number of cancer service users for their views including through a small Trans patients’ forum. You may have similar or different experiences. A Department of Health survey suggested that LGB people report worse experiences than heterosexual patients in 16 areas relating to dignity and respect.
This proposed hospital study will talk to 40 LGBT patients and 40 cancer professionals. We want to ask patients the question ‘what does good care look like for LGBT people with cancer?’ Our aim is to develop an information resource to help LGBT cancer patients to get the most from the initial consultation and raise awareness of what good care looks like. We also want to develop vignettes or case studies for group discussion with cancer professionals which will feature what we think are some of the key issues: facilitating coming out, involving LGBT patients’ partners or carers in hospital consultations, addressing LGBT patients’ fears of poor care or giving an unembarrassed response to their disclosure. The output for professionals might be a tool-kit for trainers to use or a video of a good
Please return to Julie Fish, De Montfort University, Leicester, LE1 9BH
jfish@dmu.ac.uk
consultation. We have conducted a freedom to operate search which found no similar resources in any country worldwide. We would welcome your thoughts on the following questions:
1. What do you think are the most important issues for LGBT cancer patients?
2. Are there any questions you think this proposed study should ask?
3. What output or resource would be useful for patients?
4. What output or resource would be useful for professionals?
5. Is there anything you would like to say here?
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