Voices from a Multidisciplinary Healthcare Center: Understanding Barriers in Gender-Affirming Care—A Qualitative Exploration
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Procedure
2.2. Study Setting
2.3. Participants and Recruitment
2.4. Data Collection
2.5. Data Extraction and Analysis
2.6. Reflexivity Statements
3. Results
3.1. Participant Characteristics
3.2. Extracted Codes and Resulting Themes
3.3. Theme 1: Lack of Continuity: Organizational and Institutional Factors
“Because for them it’s ‘Oh you just have to wait a year, you know it’s really a thing that you really have to put a lot of thought into.’ For me, it’s just…I was ready the day that I found out and I started preparing everything… by the end of the month, I was already living as a man at work, at school, and in my private life, and then having to go a year and a half without hormones. It’s so humiliating… Humiliating. It is so bad.” (Participant 01, male/trans male, HRT, chest surgery (mastectomy), genital surgery (hysterectomy, bilateral salpingo-oophorectomy, colpectomy)
“I think that I would like to see such an organization where they are not trying to put you in a certain box of you are this, but that there is actually a kind of openness in every step. Also, in the order in which you want to do things. For example, I know a couple of pioneers at the VU because they first had chest surgery and now, they go to the hormones. That is a pretty special order of things and I think that it is very important that those things can be done.”(Participant 19, gender queer/GNC/non-binary, age 27, none)
“I had to have an echo and I had previously agreed with my doctor that we would do this via my stomach. Once I got to the echo place they refused to do it via my stomach, so I left. Where is the communication then? Where is the connection between the departments?” (Participant 08, female, age 56, HRT, genital surgery (vaginoplasty))
3.4. Theme 2: Patient–Staff Dynamics
“…the psychologist didn’t take me serious at all. They were like okay, this is a thing…a fetish or something, you know? And I felt like I was totally not taken seriously then…” (Participant 11, female, age 23, puberty inhibitors, HRT)
“The surgeon came to me afterward, and totally didn’t have any understanding of it all. They said: Now you have to watch out with tampons. I think: Do you really think I put a tampon in there?” (Participant 06, male, HRT, chest surgery, genital surgery (hysterectomy, bilateral salpingo-oophorectomy, metoidioplasty with urethral lengthening, phalloplasty with urethral lengthening, erectile prosthetic, testicle implants))
“They are helpful and everyone tries to empathize, but it is as if you are trying to explain to someone who has never been in love what being in love is. Everyone hears you and everyone is polite to you, but nobody really gets it.” (Participant 17, female, age 36, HRT)
“I think that a lot of people who have worked for years for [organization], that they still look through the glasses of the 80s or 90s. And continue to use the same procedures and thought processes. I don’t know if that is still appropriate.” (Participant 17, female, age 36, HRT)
“I had to check in at the obstetrics and gynecology ward. And you could just hear this record scratch when I arrived. I had to be there a day before the procedure and I just felt so small, I felt humiliated and I felt like everything I had achieved up until that point was gone in an instant. I know it’s their specialty, but I just wish I had had a bed on the traumatology ward or something.” (Participant 16, male, HRT, chest surgery (mastectomy), genital surgery (hysterectomy, bilateral salpingo-oophorectomy))
“I just think that it is important that all kinds of different professionals in that area around that gender team are also aware of all those different identities. I do not mean knowing 100 million gender identities and pronouns that exist or something like that, but more, for example, that it is important to know the difference between, people who identify themselves as agender or people who identify themselves as gender fluids because it can simply have different kinds of consequences.” (Participant 19, gender queer/GNC/non-binary, age 27, none)
3.5. Theme 3: Inadequate Information and Support
“[Fully transitioning] was the only thing they could help me with, they said: ‘Yes, you can go through that process now.’ But at that time, I didn’t dare. Because back then I knew that if I had to do that, I had to tell my school everything, I had to tell my family everything, I hadn’t told my family at all, I hadn’t told anyone at school, not even my friends. So, I didn’t like that at all. I thought it was way too scary… way too big of a step for me. And then they actually said at the VUmc, ‘Well, if you don’t get the gender-affirming treatment, then don’t.’ It was either do it or don’t. So, then I didn’t and then I was gone. And then I thought, well, that was the only place I could go for my problem. And they couldn’t help me.” (Participant 14, female, age 28, HRT).
“Yes, you’re guided relatively intensely psychologically and medically before you transition, but during the transition there’s relatively little guidance. The surgeries had a lot of impact for me and I had some good guidance throughout, but because I sought it out myself. It isn’t standard practice, and it should be. Medically, you’re sent home, but without proper explanation. You don’t really know what to expect. That could be improved upon.” (Participant 01, male/trans male, HRT, chest surgery (mastectomy), genital surgery (hysterectomy, bilateral salpingo-oophorectomy, colpectomy))
“There is no explanation like… ‘You are going to look more masculine. Remember that you look more threatening to people, keep that in mind.’ There is no guidance for transgender women… ‘Remember if a gentleman offers something to drink then he wants something from you. You look different.’ There is no guidance in there.” (Participant 15, male, age 41, HRT, chest surgery, genital surgery (hysterectomy, bilateral salpingo-oophorectomy, colpectomy, metoidioplasty))
“Every time I would come from one of those particularly heavy appointments I would just come back and just tell my friends I have no idea what she told me and this bad thing could happen or maybe I am not even able to get the surgeries for this or vague reasons that she didn’t know how to explain and it’s not true when I actually get there. I get that they are trying to manage your expectations but it is HARSH…and it is weird because it’s not…it is health care…so to exaggerate the negative consequences so much…why? Its… it just felt really…there were some dark days there where I really had to think well I have to do this because the alternative I can’t bear…so I have to keep going, even if it’s terrible…but now that I am actually there…and it has been okay.” (Participant 09, male/trans man, age 26, HRT, chest surgery)
“Like I would have wanted to hear more clearly: now we’re going to do hormones for a year and then you can be prepared for the laser treatment, but then you have to apply for it in time. If they had said that all a little more clearly, and also about what was expected of me, it would have been easier for me.” (Participant 14, female, age 28, HRT).
“I really missed hearing other people’s experiences. What I did need was their opinions on the changes; which surgeries they had, and especially about how they felt about the results.” (Participant 06, male, HRT, chest surgery, genital surgery (hysterectomy, bilateral salpingo-oophorectomy, metoidioplasty with urethral lengthening, phalloplasty with urethral lengthening, erectile prosthetic, testicle implants))
“To move around in the world after a transition is sometimes more than just the physical change and possible speech and voice corrections. Sometimes movement therapy and/or behavioral lessons are needed to make someone more feminine. Also, dos and dont’s around the use of makeup hair, and how to dress (at least that is if you want to blend in in today’s women’s world, there are of course always exceptions). It is good to point out things to prospective women that they should pay attention to because many of them do not see it for themselves and nobody points out them. Like moving and presentation of them/themselves.” (Participant 18, female, HRT, chest surgery (breast augmentation), FFS, chondrolaryngoplasty, genital surgery (vaginoplasty), voice surgery (glottoplasty))
3.6. Theme 4: Lack of Autonomy in Decision Making
“Yea, it is [the gender team’s] choice…and it isn’t even the choice of the psychologist you talk to—it is the choice of the whole gender team. They have never even seen me.” (Participant 11, female, age 23, puberty inhibitors, HRT)
“But I did feel like … I would say they [mental health care professionals] have this just black and white thing that you have to be transgender enough to get the care and that…that felt really bad as well.” (Participant 09, male/trans man, 26, HRT, chest surgery)
“There is nothing wrong with me. But she kept hammering a bit on it…so then I felt I had to agree in order to get the care I needed.” (Participant 20, male, age 27, HRT, chest surgery)
“…the fact that someone decides what your identity should be because it’s technically easier is pretty insane. So, I think it’s important that they know what kind of impact that can have. They didn’t really talk about that; it was more indirect than that.” (Participant 01, male/trans male, HRT, chest surgery (mastectomy), genital surgery (hysterectomy, bilateral salpingo-oophorectomy, colpectomy))
“I have had a lot of discussions directing me towards the colpectomy and I felt like the plastic surgeon was trying to guide me towards certain care pathways. There are still standard forms of care and I know that some things are surgically easier to perform and result in fewer complications, but I think it can be very important for someone to choose an operation with more complications if the results suit their wishes more.” (Participant 01, male/trans male, HRT, chest surgery (mastectomy), genital surgery (hysterectomy, bilateral salpingo-oophorectomy, colpectomy))
4. Discussion
4.1. Centralization of Care and Subsequent Waiting Times
4.2. Power (im)Balance in Decision Making: The Relationship between Provider and Care Seeker
4.3. Role of Cis and Heteronormative Frameworks in Difficulties in Changing Approaches to Gender-Affirming Care
4.4. Strengths and Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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ID | Age | Gender Identity | Sex Assigned at Birth | Gender-Affirming Procedures | Further Procedure Wishes |
---|---|---|---|---|---|
1 | 27 | Male/Trans male | AFAB | HRT, chest surgery (mastectomy), genital surgery (hysterectomy, bilateral salpingo-oophorectomy, colpectomy) | Genital surgery (phalloplasty) |
2 | 52 | Female | AMAB | HRT, genital surgery (vaginoplasty), chondrolaryngoplasty | Chest surgery (breast augmentation) |
3 | 62 | Male/Trans man | AFAB | HRT, chest surgery (mastectomy), genital surgery (hysterectomy, bilateral salpingo-oophorectomy, metoidioplasty) | |
4 | 18 | Male/Trans man | AFAB | HRT | Chest surgery (mastectomy), genital surgery (hysterectomy, colpectomy, phalloplasty, testicle implants, prosthetic) |
5 | 40 | Male | AFAB | HRT, chest surgery (mastectomy), genital surgery (hysterectomy) | |
6 | 60 | Male | AFAB | HRT, chest surgery (mastectomy), genital surgery (hysterectomy, bilateral salpingo-oophorectomy, metoidioplasty with urethral lengthening, phalloplasty with urethral lengthening, erectile prosthetic, testicle implants) | Genital surgery revisions (correct prosthetic) |
7 | 37 | Male | AFAB | HRT, chest surgery (mastectomy), genital surgery (hysterectomy, colpectomy, bilateral salpingo-oophorectomy) | Genital surgery (phalloplasty) |
8 | 56 | Female | AMAB | HRT, genital surgery (vaginoplasty) | Genital surgery (vaginoplasty corrections) |
9 | 26 | Male/Trans man | AFAB | HRT, chest surgery (mastectomy) | Genital surgery (hysterectomy, phalloplasty) |
10 | 58 | Transgender | AMAB | HRT | Chest surgery (breast augmentation) |
11 | 23 | Female | AMAB | HRT, puberty inhibitors | Genital surgery (vaginoplasty) |
12 | 21 | Female | AMAB | HRT, puberty inhibitors, genital surgery (orchidectomy) | Genital surgery (intestinal vaginoplasty) |
13 | 52 | Male | AFAB | HRT | Chest surgery (mastectomy), genital surgery (hysterectomy) |
14 | 28 | Female | AMAB | HRT | Genital surgery (vaginoplasty) |
15 | 41 | Male | AFAB | HRT, chest surgery (mastectomy), genital surgery (hysterectomy, bilateral salpingo-oophorectomy, colpectomy, metoidioplasty) | |
16 | 22 | Male | AFAB | HRT, chest surgery (mastectomy), genital surgery (hysterectomy, bilateral salpingo-oophorectomy) | Genital surgery (colpectomy, phalloplasty) |
17 | 36 | Female | AMAB | HRT | Genital surgery (vaginoplasty), chest surgery (breast augmentation), FFS |
18 | 61 | Female | AMAB | HRT, chest surgery (breast augmentation), FFS, chondrolaryngoplasty, genital surgery (vaginoplasty), voice surgery (glottoplasty) | |
19 | 27 | Gender queer/GNC/non-binary | AFAB | None | Chest surgery (mastectomy) |
20 | 27 | Male | AFAB | HRT, chest surgery (mastectomy) | Genital surgery (hysterectomy) |
21 | 26 | Male/Trans male | AFAB | HRT, chest surgery (mastectomy) | Genital surgery (hysterectomy, phalloplasty) |
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Ross, M.B.; Jahouh, H.; Mullender, M.G.; Kreukels, B.P.C.; van de Grift, T.C. Voices from a Multidisciplinary Healthcare Center: Understanding Barriers in Gender-Affirming Care—A Qualitative Exploration. Int. J. Environ. Res. Public Health 2023, 20, 6367. https://doi.org/10.3390/ijerph20146367
Ross MB, Jahouh H, Mullender MG, Kreukels BPC, van de Grift TC. Voices from a Multidisciplinary Healthcare Center: Understanding Barriers in Gender-Affirming Care—A Qualitative Exploration. International Journal of Environmental Research and Public Health. 2023; 20(14):6367. https://doi.org/10.3390/ijerph20146367
Chicago/Turabian StyleRoss, Maeghan B., Hiba Jahouh, Margriet G. Mullender, Baudewijntje P. C. Kreukels, and Tim C. van de Grift. 2023. "Voices from a Multidisciplinary Healthcare Center: Understanding Barriers in Gender-Affirming Care—A Qualitative Exploration" International Journal of Environmental Research and Public Health 20, no. 14: 6367. https://doi.org/10.3390/ijerph20146367