Study context: Gender-affirming care in Sweden

In Sweden, the need for gender-affirming care among children and adolescents is evaluated by teams including psychiatrists, psychologists, and counselors based at psychiatric or sexological clinics. The teams clinically evaluate the gender dysphoria, and screen the patient for other psychiatric conditions if this has not already been done. Referrals for further gender-affirming treatments, for example to pediatric endocrinological clinics, are then made based on the patients’ needs [23].

Study design

This was a qualitative interview study among healthcare professionals. The inclusion criterion was being a healthcare provider who had worked clinically with gender-affirming care of minors after December 2022, when the new knowledge support was published. No exclusion criteria were applied.

Recruitment and participants

Participants were recruited via purposive sampling. People in Sweden working with evaluation of gender dysphoria, gender-affirming medical care (e.g., handling hormonal treatment) or with referrals to gender identity clinics were contacted via email and given information about the study. Additional participants were found via snowball recruitment. Individuals who answered the email to express interest and who fulfilled the inclusion criteria were sent an information sheet about the study. The time and place of the interview were decided by the participants. Interviews were conducted between February and December 2024 by both authors. Data collection was finalized when themes were recurring in relation to the research aim [24].

The 11 participants worked in or with four of the six Swedish gender evaluation teams, and were based in five different regions. They represented different healthcare occupations such as child psychiatrist, psychologist, counselor and child endocrinologist. They had worked within care for gender dysphoria for 3–12 years.

Of the total number of potential participants approached (n ~ 23–26), around 12–15 did not reply (of which quite many probably only worked with adults), while five responded that they either did not have time, did not wish to participate or only worked with adults.

The interviews

A semi-structured interview guide, constructed by the authors based on previous studies of the authors and research experiences, was used, with open-ended questions followed by more focused supplementary questions. The questions were divided into three areas: 1) perceptions of how the new knowledge support impacted healthcare, 2) perceptions of how the new knowledge support impacted youth with gender dysphoria, and 3) need for change and improvements. Adjustments were made to the questions on the basis of both the participant’s answers and their profession and in subsequent interviews based on insights from earlier participants.

Ten of the interviews were held via video call and one was held face-to-face. Only the participant and interviewer were present. Each interview took between 30 and 50 minutes. Notes were taken to remember follow-up questions but were not used for analysis. The interviews were transcribed verbatim by an AI software (noScribe) and then corrected by one of the authors. The transcripts were not sent back to the participants. The interviews and the analysis were performed in parallel, to validate when themes were recurrent.

Data analysis

The material was analyzed with reflexive thematic analysis according to Braun and Clarke [25], with an interpretative approach [24]. First, the interviews were transcribed, and the transcripts were read many times in order to become familiar with the material; notes were taken during this process. Next, the material was coded by the authors, and then the codes were divided into themes and sub-themes. Following this, the themes were reviewed to find new relations between the themes and codes, and definitions and names were given to each theme and subtheme. Finally, the findings were written.

Ethics

The project was approved by the Swedish Ethical Review Authority (ref: 2020−00929).

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed (recorded) consent was obtained from all individual participants included in the study.

Participation of healthcare workers in the study could be sensitive, since this subject might be experienced as controversial and has been highly debated in the past few years. This was handled by ensuring confidentiality. Personal data were kept separately from the interview files, and we present only limited information about each participant to avoid traceability. No patients can be identified in the interview material, as only general case examples were given by the participants.

Geographical differences as both background and result

A recurrent subject mentioned by the participants was differences in care practices between gender evaluation teams across the country. The teams seemed to have worked with different approaches not only before the knowledge support was published, but also after. P11 summarized the situation: “One of the ambitions of the knowledge support is that it would create more uniformity. If I jumped forward in time, I don’t think that’s how it turned out.” P3 reflected: “My perception is that maybe the new… that the new knowledge support has affected the different evaluation teams a little bit differently.” The differences both before and after the publication of the knowledge support were stated to be problematic, since they meant that the healthcare was not geographically equitable. Some wished for more similarity between the healthcare practices of the teams. P4 expressed the presence of regional differences by saying: “I believe it is consensus that is needed.”

The new knowledge support seemed to have affected different teams differently. Several participants felt that the knowledge support could be interpreted in more than one way, which could be the reason for the differences in its impact between the different teams and hence geographical places. Regarding this vagueness, P4 said:

If possible, clarify the exemption criteria further, particularly regarding the demand to avoid excessive complicating factors. This aspect has been the most open to interpretation, and is likely one reason for the significant variation in healthcare practices across the country.

Other participants pointed to the criteria of childhood debut when reflecting on what might create differences between teams; for example, P11 said: “The criteria around this with gender incongruity in childhood, how to assess it, on what grounds. What is gender incongruence in childhood?” As the criteria did not state any specific age or how this incongruence should be expressed, there was room for differences in the interpretation and evaluation.

Representatives of some teams thought that the increased restrictions on treatment in the new knowledge support were a positive development, for example P3 said:

So I would still say that it [new knowledge support] has had a positive impact, in that… in that you see the individual child or adolescent as a whole, where the gender incongruence or gender dysphoria is one part of them. But, there are also other aspects to the child’s or adolescent’s overall constitution.

Participants from other teams were more negative and mentioned the lack of flexibility when it comes to treatment as problematic. P2 explained that for patients who had both gender dysphoria and mental illness, and who needed gender-affirming treatment, “it gets a bit disqualifying because the guidelines are a bit too tight there.” P4 felt that the knowledge support’s “focus was almost just put on tighten, tighten on all fronts/…/ I would have wished for a little more trust in the evaluation teams’ evaluations.” P11 said that many things still worked the same as before, but that before the new guidelines they “wouldn’t have waited for the 18th birthday”, noting that “the guidelines are rigid”. These results illustrate both how different teams seems to hold quite different perspectives, and the inherent tension in prescriptive guidelines: on the one hand, they can help to reduce geographical differences, but on the other hand, they may restrict care providers to make their professional context-specific assessments. This was illustrated by P9:

I think it’s difficult to have such clear guidelines so that you get away from [differences between teams]. And I think that you may not want to get away from having that room for action either. For professionals to actually make their judgments. And use their experience and expertise. The guidelines would risk becoming very blunt./…/ But I think we’d need to have more routines and forums for the teams to work together. To make joint judgments. In order not to drift apart [more].

In sum, while the new knowledge support was partly intended to reduce geographical differences, it seemed that different teams had interpreted and implemented the new guidelines differently, which can contribute to geographical inequitable care.

Navigating a complex evaluation and problematic criteria

While the aim of the evaluation was perceived to be the same as before, some new criteria and different possibilities for hormonal treatment seemed to have partly changed the conditions for the evaluation.

Changing conditions for an explorative evaluation

Several participants thought that the evaluation process was similar to how it was before, as exemplified by P2: “We do what we had done previously.” The participants highlighted that the aim was to have an exploratory, individualized evaluation in which the young person could reflect on their own identity, life, and future in counseling with healthcare providers for a longer time, around 2 years. Some felt that the knowledge support had increased “the understanding between pediatric endocrine and the evaluation teams at child psychiatry” (P8). P3 and P6 explained that even before the new guidelines, in their clinic they had already worked in the way suggested by the new knowledge support, trying to follow the so-called Dutch Protocol (which is referred to frequently in the knowledge support). P3 stated:

Our children’s team have since before the new guidelines seen a need to work in the way that the new guidelines prescribe and allow for/…/ From the beginning, this has been the only thing we can hold on to. So there I think that we’ve tried to, like, offer this treatment based on the conditions that the Dutch Protocol prescribes.

Although P3 argued that her team worked in a very similar way to before, she also said: “now when the Swedish National Board of Health points more clearly to that [the Dutch Protocol]”, indicating that they might not have strictly followed the old guidelines.

The participants stated that the new guidelines could make it both easier and more difficult to conduct the evaluation. Now, in some cases, puberty blockers were off the table from the start, as it would not be possible for the care seeker to fulfill the criteria. Some participants explained that this situation, paradoxically, left more room for the evaluation itself: without the time-sensitive pressure to decide on blockers before puberty advanced, they could focus more on exploring overall needs. However, the stricter criteria for access to care might mean that the care seekers did not share all their thoughts, experiences and feelings:

I think the description in the international guidelines is much more helpful. That you need to be able to explore gender identity development over time. This [the knowledge support] also leads to a difficulty or obstacle for us in working with these things. We should explore things together with the patients. But when there is such a clear box that they must fit into to be considered for treatment, then there are many who could, and are, adapting their descriptions based on the fact that they know about this. This is a well-read patient group (...) Our opportunities for free exploration are much more limited. (P9)

Relatedly, before the new guidelines, puberty blockers were used not only as a step in the transition, but also in some cases to buy time to decrease gender dysphoria and get a more productive evaluation. P2 explained: “We used puberty blockers as a part of the evaluation, not maybe like a part of the evaluation per se, but as a way to decrease gender dysphoria and give space and time to explore who you are.” Now, the stress about not getting puberty blockers affected not only the patient, but also the evaluation itself. P2 continued: “It can be hard to achieve calmness in the exploration, because there is worry and stress.”

Autism is blurring the picture

A central difference between the new guidelines and the international ones is the formulations around “neuropsychiatric disability”. P1 was critical towards these formulations in the knowledge support, which she referred to as saying that “nothing should blur the evaluation” regarding neuropsychiatric disability. P9 was also critical, saying that if the guidelines resulted in a whole patient group being excluded, this would be “highly discriminatory”.

Some participants believed it was hard to separate autism and gender dysphoria in the evaluation. P7 asked: “Does it have more to do with autism symptoms, for example, than with gender dysphoria and gender incongruence?” P2 thought that autism might in some cases be “instead of gender dysphoria, an explanation for what you’re seeing”. P3 said: “It’s hard to disregard that this plays a part,” meaning that the neuropsychiatric disability affects gender dysphoria. P5 felt that some patients did not see their autism as the source of some issues, but rather thought it was gender dysphoria: “‘Yes but if I only got these hormones, if I could only remove my breasts, then I would have done so much in life, and I would have gone to university. I wouldn’t be home.’”

Other participants clearly stated that having autism did not mean that a person could not get treatment. P4 noted that gender dysphoria and autism could be present at the same time, and said that it was “unfortunate when people want to explain that one thing is because of the other. We believe that both can exist.” P1 did not think that neuropsychiatric or intellectual disability should be an exclusion criterion, and believed that the teams were competent enough to evaluate gender dysphoria despite these diagnoses: “If care is needed, then neuropsychiatric variation or intellectual disability diagnosis, for that matter, is not in the way, of course.”

Assessing the young person’s maturity was both a part of the evaluation and a criterion for having treatment. The participants felt that a neuropsychiatric disability might impact maturity; for example, P7 stated: “A healthy 16–17-year-old without diagnoses has in general, in terms of maturity, gotten further than one with autism.” In a similar vein, P2 said:

Patients who have several diagnoses like intellectual disability and autism, but who have been clearly gender dysphoric since they were little, then the gender dysphoria is nothing hard [to diagnose], but sometimes I can think that it is not right maturity-wise to give treatment before age 18.

In a similar way, P9 felt that neuropsychiatric diagnoses could prolong the evaluation in some cases, but in other cases “it does not blur the picture”. Hence, some participants pointed to the importance of individualized evaluations and assessments, which the strictness and rigidity of the new guidelines might make more difficult.

Changing criteria and difficult decisions

Childhood debut of gender dysphoria, which is a criterion for access to medical care in the new guidelines, was another aspect of the evaluation that our participants mentioned as being difficult. As P9 said, not all young people might have the “possibilities, preconditions, the language to understand what it has been about, or to have felt safe enough to talk about it.” The criteria around this are now stricter than in the old guidelines, and the requirement to document the childhood debut affected the content of the evaluation. Some meant that this might favor “stereotypical gendered expectations and norms” (P9), meaning that such issues might be the only way to assess this childhood debut among children who had not expressed it verbally.

Even though the knowledge support gave criteria for providing treatment, a few participants thought it was hard to decide who should get gender-affirming treatment; they expressed the view that gender dysphoria was subjective, and so no test could help in the decision-making. P6 said: “But that’s probably the hardest thing, how are we supposed to know? How are we ever supposed to know what’s right?” Similarly, P2 said: “Sometimes it can be easy to give a diagnosis of gender dysphoria, but the treatment decision can be something totally different.” This was still mentioned as an issue, despite the new knowledge support.

Balancing treatment access, timing, and alternative support

Access to puberty blockers and hormonal treatment for the care seekers seemed to be what had changed the most with the new knowledge support. Some participants argued for a larger shift towards psychosocial and alternative support, while others highlighted the tension between the care seekers’ needs and the opportunities to help within the new guidelines.

Restrictive criteria for hormonal treatment and (missed) opportunities for alternative support

According to the participants, it was the use of puberty blockers and hormonal treatment that has changed the most for the teams, although some said that their teams had already been more restrictive even before the new knowledge support. These treatments could still be given in exceptional cases, but it was now rarer because the criteria in the new guidelines were stricter. Medical interventions were “simply becoming less relevant in the children’s team” (P5). However, some said that even before the new guidelines, medical care was provided only in “exceptional cases” (P9).

The timing and age limits in the new guidelines meant that most young people would not be able to fulfill the criteria for access to puberty blockers. P7 said:

Some patients have had to get off puberty blockers because it isn’t possible to get cross-gender hormones before 16 anymore. It’s only in exceptional cases./…/ Then you’re also going to have puberty blockers for 2 years, maximum. If you can start cross-gender hormones by 16 you shouldn’t start [puberty blockers] before 14 years of age either./…/ Not many would benefit from puberty blockers [at 14] because they’ve already gone into puberty.

This had also led to a situation where “more people with assigned female gender do not get puberty blockers” (P2) because their puberty started earlier. However, another perspective highlighted was that people who were assigned male at birth might have a harder time reversing the physical masculinizing changes during puberty, which might affect the possibility of their being perceived in accordance with their gender identity. Other participants explained that the length of the evaluation often meant that it could not be completed in the time available between a care seeker first being seen by the team and the beginning of puberty.

Even though some participants felt that the possibility of getting gender-affirming healthcare had now changed, they perceived the care seekers’ need and desire for gender-affirming medical care as being the same as before the new knowledge support. P7 said: “I think the expectations are the same.” The care seekers still hoped to get puberty blockers, hormonal treatment, and mastectomy, although many knew that the possibility had narrowed. Participants such as P5 described cases when adolescents had expressed anger because of the new knowledge support: “What you can see is that the adolescents who are very convinced about getting hormonal treatment, they are very upset that it has become harder, of course.” Even the adolescents who fulfilled the criteria of being an exceptional case were worried because “they feel that their opportunities have shrunk” (P2).

Since specific gender-affirming care could not be given in many cases, other medical procedures could be provided to help the patient. The new knowledge support attaches great importance to psychosocial support, and this was something provided by all the teams. However, despite the knowledge support, the teams did not seem to have put extra focus on psychosocial support. Some participants explained that they did not have the resources for this, pointing to how the evaluation had become even more extensive. However, P7 said: “We try referring out a little bit more,” arguing that the patient might benefit from support from an independent counselor or psychologist who was not involved in the evaluation. P1, who worked with sending referrals to the evaluation teams, said: “We have no treatment, but supportive counseling … many find it a positive experience to talk to people with trans-specific competence.” An answer to a question about what was needed for this patient group in the future was “social support” (P8). Hormones that were not gender-affirming could be used to stop menstruation and thereby decrease gender dysphoria linked to menstruation. P2 said that they “recommend progestogen to regulate menstruation.” Moreover, the new guidelines allowed for an earlier referral to speech and language therapy, which could be helpful for some patients.

Postponed or denied treatment

The new knowledge support meant that more of the patient group had a longer time before getting treatment. Several participants said that the longer wait had led to an increased level of stress among the care seekers. P2 said: “Then it means great stress for many adolescents.” P1 agreed: “Many [care seekers] are worried.” The effects for the care seekers were also described as “frustrating” and “painful”, with the possibility that the young people might isolate themselves while waiting for treatment (P10).

However, some care providers emphasized that waiting was a much larger problem, not solely related to the new guidelines. As the number of care seekers had increased but the available resources had not, waiting times had increased substantially. A combination of long waiting until first contact with the team and the guidelines’ requirement to follow care seekers for at least 2 years meant that in many cases the care seekers would be over 18 years old before treatment was an option. P9 said: “Most are around 18 or over when they’ve come that far [in the evaluation]/…/ which means that we miss opportunities to help as well.” The different guidelines for minors and adults could also contribute to the incorrect belief that “something magic happens around the 18^th birthday” (P10), meaning that some care seekers believed that if they just turned 18 years old they would receive hormonal treatment, which was not always the case.

Several participants explained that their patients were affected by uncertainty about how long they would have to wait to get treatment and worrying about not being able to get treatment. P2 said:

And when there is possible treatment, treatment as you see as the light at the end of the tunnel, that you can have this help, and then someone comes and just, it feels like, turns off the light/…/ So, it becomes a huge stress and worry.

When the new knowledge support was introduced, some 16-year-olds who had thought they would soon start hormonal treatment were told that they had to wait until the age of 18 because of the new guidelines. P4 said that this “created a little bit of adventure for some of them, with everything from inpatient hospitalization to just more difficult contacts/…/ when the news became really hard for them.”

The increased amount of time before treatment was seen as positive by some care providers, in some respects. P4 said that the new knowledge support “makes it easier for me to follow them [the patients] for a longer time.” This longer time for evaluation was “a big victory in their own… in their process with themselves” (P4). The principle of being careful was mentioned. When P6 talked about the evaluation taking a long time, she described this as “something good”, since the treatment was about “very big things”.

Several participants talked about how the knowledge support could be used as an argument for withholding or postponing treatment, and mentioned the guidelines as clear in these cases and something to lean on. P4 explained:

It was harder to get … to ask some people to wait before these guidelines. Now, on the other hand, it’s pretty easy, because we can say that these are the rules … so that part has helped us, in a way, in some cases.

In a similar vein, P10 said that the knowledge support could be something “to point to” when telling a patient that hormones were not relevant in their case, reflecting that making this reference might be less damaging to the patient–provider relationship. Longer waiting time was also said be a “relief” (P10) for some parents, since treatment after age 18 would no longer be their decision. According to the participants, some parents were “very, very scared of this, of the treatments and how it will be for their kids” (P6). It could be hard for parents to accept treatment because of fear and worry. P4 said: “Many of them are a bit relieved, because it’s often up to 18 now, because then it isn’t a decision that must be made by the guardian.” P7 said that some parents were “happy” because of the new knowledge support.

However, as already mentioned, some care providers wished for more flexibility, and the “possibility to help more” (P10). This lack of flexibility could in some cases lead to patients waiting longer for treatment than the healthcare provider thought was necessary. P4 said: “Some patients have actually been with us since they were children, and this last wait is only a formality.”

Opinions and debates affecting care guidelines and care providers

The participants described a range of perceptions of how people outside gender-affirming healthcare influenced not only the knowledge support, but also their work and experiences of it.

The power of the public debate

According to the participants, there had been a lively public debate on this topic for the past few years. During 2019–2021, Swedish television broadcast documentaries by Uppdrag Granskning on gender-affirming care of children, called the “Trans train”. These were mentioned by several participants. P4 said: “Before Uppdrag Granskning you didn’t talk about this./…/ Then it came up for discussion”.

The participants expressed frustration about gender-affirming care being discussed as a political question more than a question about medical healthcare. P4 expressed:

Still some frustration that it feels like a lot of this work [with new guidelines] has been driven like almost a political question, maybe more than a patient question, because of how Uppdrag Granskning and the public debate have gone the way they have.

The care seekers were not recognized, as P5 said: “In some way they get to be the bat in an ideological debate, where you don’t see these individuals on the first hand, instead it’s about politics.” In connection to this, the participants emphasized that both the debate and the guidelines reflected a simplified picture that failed to account for these being “very complex issues. But now there’s a lot of pie-throwing and smearing, it’s such a polarized and politicized discussion” (P9). P9 mentioned several things that are not always considered in the debate or in the production of the guidelines; the hierarchical relationship between healthcare provider and care seeker, issues of patient autonomy and responsibility, and that fact that the evaluation would never be able to be a “fortune teller” and provide 100% certainty in relation to future gender identity.

Several participants thought that the public debate had affected the production and content of the knowledge support. When asked why they thought that the knowledge support had been written in the way that it was, P1 answered: “I think those kinds of winds of fear based on various political decisions or influences, and so on.” P9 argued that “For some reason, there was a very sharp change in the guidelines regarding hormonal treatment, right at the end of the process.” Conversely, some thought that the content might not have been affected by the public debate. P4 said the debate made the production of the knowledge support go faster: “I felt that the attention from society speeded up the process, but it was already under investigation before Uppdrag Granskning covered it, for example.”

Taxing work and a questioned profession

Every participant mentioned their work as being challenging to various extents. The updated knowledge support made it emotionally hard for some participants, as they could not help the patients in the way they wanted to be helped; that is, through gender-affirming treatment. P3 said: “And you want to help them as well, and as both an adult and as a healthcare provider, it’s… it’s really hard to make a child disappointed.” Moreover, working in a questioned area of care was perceived as difficult by some, who felt they needed to take extra precautions to be on the safe side. However, it could also contribute to “welding together” the team (P10).

The lack of research on the effects of gender-affirming treatment and the changing characteristics of the patient group were mentioned as a background to the new guidelines and issues that made the job harder. P3 said:

When the patient and parents have a clear picture of what they need and would make them feel good, and then the healthcare sits on the other side and has very bad… knowledge about/…/ long-time effects, it gets hard for everyone.

The participants argued that research is needed not only to avoid people being given treatment that they do not need, but also to treat those who are in need. P7 said: “And that’s for both [situations], so we won’t give the wrong treatment in any way.”

Some of the participants believed that there is “a lot of proven experience, a lot” (P1) which had been ignored in the production of the knowledge support. P2 described the same thing, saying: “The experience me and my colleagues have built up through seeing these adolescents for many years, it weighed lightly in the end.” P4 said, in a similar vein: “Some frustration that we experience, many [providers] in healthcare, that the decision was partly made based on this [opinions of people with little knowledge].” This was contrasted to how the production of the international guidelines, SOC 8, was characterized by “listening to people who have a lot of experience working in this field” (P9).

P1 stated that not all the experts who took part in the production of the knowledge support were listened to: “[NBHW] chose to listen to/…/ one out of seven, and the others were very critical.” The members of the expert group involved in producing the knowledge support were reported to be unhappy with the result, as P1 said: “We were at a conference where several from the expert group who were part of this production [of the knowledge support] were very critical and open with their critique.” In connection to this, P2 spoke about how the decisions were not made by those working in the field, and mentioned the decision about more restrictive care from Karolinska University Hospital: “When they took this decision about a stop in Stockholm, then it felt like the ones taking this decision stood far away from the gender-affirming care.” With regard to the knowledge support, P2 felt that people who did not work in the healthcare of children with gender dysphoria had “influenced the final result quite a lot.” P1 thought that the selection of sources used in the SBU report was questionable: “Unfortunately there is a low trust for these different source references.” P9 highlighted how the international guidelines were built on other studies due to different “grading of trustworthiness of the studies”, but also emphasized that “there is agreement that more research is needed, and more long-term studies are needed. That’s not under debate.”

On the other hand, some participants accepted the knowledge support and its sources. When comparing the new knowledge support to the old one, P5 said: “There is a clearer relation to research.”

Methodological strengths and limitations

The participants in this study had different professions and were recruited from different regions, which enabled us to explore more aspects of the evaluation process and treatment. The open questions in the interview guide allowed the participants to reflect freely, creating extensive material from their discussion of the challenges and facilitators of their work and gender-affirming healthcare for minors in general.

Trustworthiness was improved through using open questions, through discussing the coding, thematization and emergent findings between the authors, and through using many quotations to illustrate the findings. The participants worked in teams and clinics from four of the six Swedish regions that have evaluation teams (and in one additional region), as despite several emails to all teams we did not manage to recruit professionals from the other regions. This means that the findings might not be equally applicable to all teams of Swedish gender-affirming healthcare.

Both authors conducted interviews, coded and analysed the interviews and wrote parts of the paper. Both are trained as medical doctors, but they have different previous experiences of the research topic, different academic experiences, as well as different experiences of gender non-conformity providing both an insider and outsider position in relation to the research topic and facilitating both curious naïve explorations as well as a rigorous knowledge about the research field. No personal relationship existed between the participants and interviewers on beforehand.