← Return to LGBTQI+ persons with a serious illness: New Mayo Research Survey

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@colleenyoung

@bebold, this is useful feedback. I brought your comment to the study team and they asked me to share this with you.

"Thank you for bringing your concerns forward about this post and the survey questions. As the study team, we will re-review the survey questions. For background, the questions were developed from a large scale, pre-existing, validated questionnaire assessing cancer needs because to our knowledge, there is no similar validated questionnaire for the LGBTQ community.
Receiving feedback from study participants is an important part of any research study and we value your engagement and response to this post."

So, it turns out that you are right. The validated questionnaire is not specific to the LGBTQ community. This study is a step forward to developing a validated questionnaire with more accurate specificity. Your feedback helps contribute to this improvement. While I regret that the questions made you angry, I'm grateful that you took the time to provide this feedback. Words matter.

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Replies to "@bebold, this is useful feedback. I brought your comment to the study team and they asked..."

Hi Colleen,
First, thank you so much for reading my post and taking it seriously. I appreciate that. I didn't know if by responding I was just wasting more time. I guessi would reword my feelings as annoyed.

2nd, I appreciate very much that YOU took the time to send in my thoughts and that they responded and you shared part of their response.

3rd. I'm going to stick with my thpughts and substitute "cancer survivor" and the questions still seem to question the intelligence of the survivor. Words do matter. "Did you understand your doctors instructions/whatever" is very different than "did your doctor take the time to explain to your satisfaction..." As the paying customer, the provider doesn't get to walk away after having used all medical lingo and its the paying customers fault for not understanding. These questions shouldn't even exist for if an oncologist isn't ABLE to explain to a cancer patient their course of treatment, in this life or death situation, I would hope the seriously ill person wouldn't feel so threatened that they wouldnt just go find a better doctor. (tho too many patients do continue with bad doctors for insurance or intimidation reasons.)
I'd be equally annoyed if I had cancer answering these same questions. The onus is on the doctor to explain well not for us to understand better. This feels like it was actually written by doctors and has a gaslighting quality to it.

Very weird questionnaire. I font see how any answers can result in any understanding except it all being the gay persons, the black persons, the cancer patients responsibility to understand doctor speak rather than the medical persons responsibility to be better at educating.

What does "validated questionnaire" mean? Who validated it? And again, I read just the beginning questions so perhaps I'm not being 100% fair as maybe it got better, I doubt it tho.

I will never understand how always and never choices provide valid answers to anything. Both answers are automatically a lie or at minimum an exaggeration? Nothing in this world is always or never. The choice of NA seemed "always" inappropriate as the questions wete vague enough to "always" be answerable. I chose NA for a few not because the question was not applicable but because the choice of answers didn't apply.

For me, its kind of like someone seeming to offer an apology that contains the word "you". If I apologize for an error I made, Its never about the other person. Its only about me. "I'm sorry you misunderstood" is me calling them dumb, not an apology. It needs to be me saying I am sorry for my actions.

This study feels so much more like "I'm sorry ypu misunderstood." Bit it did make me look at and think aboit how much I can blame myself when it was my physician's bad for not caring enough to make sure I understand esp my cancer diagnosis and treatment right?

That is good for all of us to look at if we ever hope to reduce physician gaslighting. The onus is on them.

This might be a great discussion here for all of us to read these questions and talk about their implications, how ww felt reading them, rather then hide it in the lgbt section? Id love to hear many reactions. Esp those unlike mine. Then see if other nurse-patients understand the demeaning quality of the questions. Or not. It could be all me.

Thanks Colleen.

I previewed the whole 4 page study to understand the response to it. What I got was more a sense of assessing the care, the care giver, and care team, rather than questioning the survey taker's intelligence. I agree that it was hard to have to choose from only 3 options as the questions could address a limitless variety of situations.

I didn't really see any clear link to the LGBTQ... person in the survey. It seems quite generic, or if anything, is directed to cancer patients. I wondered if anyone representative of the gay community was involved in creating the survey, or if there should be consultation having to do with the framing of the questions and perhaps the types of appropriate responses to check as opposed to the 3 that are used here.

I don't remember if the word "minority" was used in the document. @bebold has a valid point in pointing out the ill advised choice of word.

As I said, rather than getting the sense that the patient was being judged, my take is that the care team is under scrutiny. I might wish that caring professionals I've dealt with would be able to read how I would rate their various attitudes and behaviors. Perhaps they would take a different approach to their patient care.

IMHO

Jim