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

I'm confused. The questions seem relative to any person, not at all specific to being a "sexual" minority. (Someone needs to re-write the intro post. Its a bit off putting. "Sexual identity or sexual orientation?" would be the correct phrase. I'm not even sure what a "sexual minority' is.)

I started answering but only got through enough questions to feel angry. The questions don't include anything about having a hard time with medicine BECAUSE of being LGBT. Is this about stigma? The questions are not about stigma. The questions have nothing to do with being LGBTQ. Some sound more like you are questioning MY ability to understand (LGBTQ has nothing to do with our intelligence and ability to comprehend.)

The questions should have more to do with whether or not we were treated differently, did we experience poorer health care, were things explained to us more poorly AND do we feel stigma or hate are at play when we visit our dr. Hopefully anyone would leave a dr who didn't explain things. Its not an LGBTQ issue if drs don't explain...instead of "Did you understand?" What does that have to do with being LGBT??
These questions are so bizarre it makes me wonder if the study is about LGBTQ people being "dumber" medically. Kind of insulting.

What do these very simplistic questions with 3 rediculous options for answers, have to do with being a minority? Substitute "African American" for LGBT and it could be even be potentially seen as racist. Nothing pertains to being over 50, again, unless you are questioning OUR intelligence. The study should be more about how we are treated by medicine than if I understand what my dr tells me.

I will definitely call. I encourage anyone of any minority to view at least the first 5 questions then leave just to understand what I am saying.

And nothing is ever "always" or "never" or "NA" so right there it's not a proper "study" if none of the available answers are realistic. The questions have nothing to do with being LGBTQ, being seriously ill OR being over 50. Certainly nothing to do with "social and physical factors impacting the healthcare-related needs." of being a minority. Unless like I said, the "social and physical factors" are about US rather than about our treatment.

I fit the profile but I'm a nurse. My answers refer more to me being a nurse than to me being a lesbian. Who wrote these questions and what exact social part of medicine are you exploring beyond me being unable to participate in my medical care assuming its because I'm LGBTQ?

@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.

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.

@bebold, your attention to detail is really appreciated. I hope others will also chime in. I find discussions about words and their effect fascinating and extremely informative. Not everyone reacts the same to the same words.

In short, a validated questionnaire means the questionnaire has been given to many people, most of whom respond to it the same way when facing the same circumstances.

In this instance, I'm not apprised of the testing that this particular questionnaire went through. However, your point is well taken that this questionnaire is not specific to the LGBTQ community, which is the aim of the study. The flaws of the questionnaire underline the opportunity to do better. I hope you called the study coordinator as you mentioned you were thinking of doing.

I encourage others to take the questionnaire and share in the comments here how they made you feel or how you'd like to see them reframed.

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

Hi Jim, the part that felt more about the patient was when it was worded about us understanding rather than it being explained well is all. It felt like questioning the patient's capability. Perhaps I'm just very on guard about gaslighting these days esp as a long covid person, regardless of my identity affiliation. Gaslighting among the Long Covid group is real for is all.

It can be hard to say we were discriminated against as it can always be denied, which would deny our perception, tbe very definition of gaslighting. As with any minority patient, I dont know if many institutions would admit we were rigjt, or our feelings were valid.

My individual PCP would listen I think but I think its easy to end up in the "difficult" patient bin. Thanks for giving more feedback.

It might be there is a general questionnaire, with some specific multi minority questions, then ask how we identify, and compare the answers thru that lens for comparison. Definitely with LGBTQA+ helping prepare.

Thanks.

@jimhd @bebold and others who would like to weigh in, your comments have been thought provoking, insightful, and resulted in change. The researchers would like me to share this with you:

"As a research team, we are very grateful for the discussion about this survey along with the responses we’ve received so far. To our knowledge, there is limited research on the best way to learn about the healthcare-related needs and experiences of older LGBTQI+ individuals who are dealing with a serious illness.

In our efforts to better understand the needs and to improve the healthcare experiences of LGBTQI+ individuals, we have tried different ways of collecting information. We have done 1:1 interviews, received written responses to open-ended questions, and now a ‘check box’ survey (link below) using a modified version of general questions often asked of those with cancer regardless of their sexual identity or orientation.

As we learn more about the healthcare needs and experiences of this community, we hope it will also help to inform how we use different research methods in the future. We sincerely thank everyone for your engagement with this critical work."

If you haven't participated in the survey, read more about and click the link in the original post here:
https://connect.mayoclinic.org/discussion/lgbtqi-persons-with-a-serious-illness-new-mayo-research-survey/

After reading comments, I looked at questions out of curiosity. Did anyone notice they even left the word cancer in question 5.

The only way I would see researchers gaining any knowledge from this questionnaire is if a large population with similar disease took it and then compared answers from LGBTQI+ individuals to non LGBTQI+ individuals. The same way you would survey different ethnic groups races to see if their answers were significantly different.

As far as the three choices you can pick from, I doubt anyone over 50 with chronic conditions would ever answer "Never had problem" to any question. I am over 50, chronic conditions, have had excellent health care and doubt I could answer any questions with the "Never" response.

Laurie