Is Someone Else Going to Tell Him He Is A Boy? Relatives’ Views on Swedish Transgender Healthcare

Is Someone Else Going to Tell Him He Is A Boy? 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Relatives’ Views on Swedish Transgender Healthcare Kaberi Mitra, Fotios C Papadopoulos, Caisa Öster, Sara Sylvén This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-3948738/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 10 You are reading this latest preprint version Abstract Background The increasing incidence of the medical diagnosis Gender Dysphoria has led to public debates in Sweden, questioning an already vulnerable group. This study explores relatives’ views on the Swedish transgender health system, in order to identify factors that can be improved. Methods An interview guide was created together with the Swedish Federation for Lesbian, Gay, Bisexual, Transgender, Queer and Intersex rights. Care seekers with gender dysphoria included in the Swedish Gender Dysphoria Study were asked to give consent for an interview with a relative of their own choice. Eleven interviews were conducted. The material was examined using thematic analysis. Results The waiting times are long without clear information and lacking coordination. This compels the relative to substitute the deficiencies in the system, especially as an emotional shelter and a coordinating function. Stereotypic questions are being asked without motivation and geographical distances hinder participation in family support groups. Conclusions A coordinating function in the transgender healthcare system would be beneficial for both the care seekers and their relatives. The system flaws have negative impact on the mental health of both the care seeker and the relative. It is important that care givers are transparent about the waiting times and motivate all parts of the process. gender dysphoria gender incongruence transgender healthcare gender-affirming healthcare relatives Figures Figure 1 Introduction During the last two decades there has been a notable increase in the number of individuals with gender dysphoria (GD) symptoms seeking gender-affirming healthcare ( 1 ). This has increased the interest in medical studies within the transgender healthcare, as well as making the transgender healthcare an object for criticism from the public eye in Sweden. GD is currently a psychiatric diagnosis ( 2 ), hence in order to get access to gender affirming treatment the care seeker needs to undergo clinical evaluation ( 3 ). Studies conducted in a Swedish context have problematized the fact that the caregivers assume a gatekeeping function; the problem being the evaluation itself as well as the healthcare structure (4). Close relatives of individuals with GD symptoms are part of an important support system, and previous studies implicate that adequate support from family members can improve both emotional well-being, treatment outcomes, and integration into society ( 5 ). According to a recent study of transgender and gender diverse people with a story of detransition, the vast majority reported that their detransition was driven by external pressures including lack of family support ( 6 ). Previous studies on relatives of individuals with GD are mostly focused on parents, since the underage care seeker is dependent on its legal guardian ( 7 ). A few studies have involved partners or children of gender-affirming care seekers ( 8 ). Studies focusing on the relative’s own view of the process, and in particular the transgender healthcare system, are lacking in the Swedish context. The aim of the current study was to explore relatives’ views on the Swedish transgender healthcare system to further develop and enhance transgender healthcare in Sweden. Methods Data Collection This study is a sub-study of the Swedish Gender Dysphoria Study (SGDS), a prospective multi-centre study ( 9 ). SGDS began in 2016 and has since then recruited participants from the six specialized transgender healthcare clinics in Sweden, to date approximately 500 patients. All care seeking individuals with ongoing contact with one of the recruiting sites, who were 15 years old or older and fluent in written and spoken Swedish have been eligible to be invited to participate. All participants were asked to give a consent to contact a close relative of their own choice for a separate interview. Recruitment of the relatives took place in April through June of 2020. The relatives were contacted by SS separately via consecutive selection. The relatives were given verbal and written information about the study, and informed written consent was obtained. No information on the care-seeker (such as gender identity or the transgender person’s status in the treatment process) was available at this stage. Approximately 80% of the relatives who were contacted gave consent to participate, and the interviews were conducted shortly after consent was obtained. The recruitment period ended when the last interviews appeared to not give any new information. After consenting to participate, participants were interviewed individually via telephone by SS. The interview was conducted based on a semi-structured interview guide developed in collaboration with the Swedish Federation for Lesbian, Gay, Bisexual, Transgender, Queer and Intersex right (Appendix A). The participants were invited to freely speak about their experiences concerning relations, emotions, stigma, and the healthcare system. The interviews were recorded and saved on a secure server at Uppsala University Hospital. Interviews were 30 to 120 minutes long. For the current study, only the parts of the interviews focusing on the transgender healthcare were analysed. Analytical approach The recorded interviews were transcribed, anonymized, and analysed based on thematic analysis ( 10 ). The analyses began while listening to and transcribing the interviews (KM and SS). Thereafter, initial understanding appeared by reading through each transcribed interview multiple times. Initial codes were identified by manually cutting important quotes into paper strips and grouping them into themes. The codes were re-grouped several times by KM and SS, and thematic maps were created. All codes and themes were re-organized several times, until all authors agreed on the overarching theme and sub-themes of the study. Information power was deemed to be adequate when the last interviews confirmed previous results and appeared to not give any new information ( 11 ), leading to in total eleven participants. Participants All eleven participants were adults, with different relations to the care-seeking individuals with GD symptoms; eight were parents, one spouse, one ex-spouse and one an adult child of the transgender person. Eight identified as women and three as men. The care seeking individuals with GD symptoms were all in different stages of the evaluation process; five with ongoing gender-affirming treatment, two had finished the process and were waiting for the approval of a new legal sex, and the final two had not yet started any gender-affirming treatment. Ethical Considerations The study protocol and interview guide were approved by the Swedish Research Ethics Review Board (Dnr 2019–03435). Results The overarching theme is “Balancing personal emotions and project management – the role of relatives in transgender care” ; the participants taking a role in a sphere together with the care seeker in the health system (Fig. 1 ). The theme consists of two main themes: “Juggling emotions” and “Formal reception” . Subthemes were identified within each theme. Juggling Emotions The theme describes the participants coping with the care process. The following sub themes are identified: “Excruciating Waiting”, “Being An Emotional Shelter” and “Being A Health Care Coordinator.”. Excruciating Waiting This subtheme represents periods of waiting associated with the transgender process, both before seeking medical care and within the transgender healthcare system. It is such a long long time to wait, first waiting for the diagnosis and then... First you have to wait to come there and for the diagnostic process to be completed, then you must wait for referral and to be put on that waiting list. Then for the mastectomy, he was called in for a first examination and (….) of course then the waiting time for the operation was at least one year so we got news about long new waiting periods all the time. P9 There is waiting both for the first appointment and in between the visits during the process, whereas several relatives emphasize that the care seekers have already waited a large part of their lives to openly come out, and to gather the strength to seek medical care. You are already there waiting, and then you get told there is even more waiting. Okey, but I’m sitting here waiting already? Besides, there are quite a few that have... If you consider adults or young adults or kids, it is not like they just came up with this from one day to the other, they have waited a long time within themselves before even telling anyone. P9 The relatives perceive the waiting times as unspecific, with long periods of time without any contact with the caregiver, resulting in an excruciating sensation. Because... it has almost become a joke between the two of us about a typical three months-thing, ‘cause everything... the standard answer was always “in three months” regardless of what you were asking, and... I would say it was extremely frustrating, both to N and for me (…) you never knew if the three months might be three months to get another notification about an additional three months, so... P1 Some of the participants mention the fact that the long waiting times can be caused by lack of resources, while others point out that they have been given no explanation at all. One evident consequence of the silence from the health care system and the long waiting times are feelings of hopelessness, frustration, and the sense that life is put on hold. We have talked quite a bit about, N and I, that life is kind of paused somehow. It is a lot like a pause because with some things you cannot move forward, some things, just like identity-wise there is a feeling of starting your adult life when you are waiting for really radical things like operations and, yeah... P9 Isolated voices mention that some degree of delay in the assessment period may serve a purpose, to exclude reasons other than gender dysphoria. However, even these participants emphasize that the long waiting times are problematic. Among other things, some participants describe helping the care seeker pay for the top surgery out of their own pocket to pass in everyday life – at least partly. Some participants have even revealed that the care seeker self-medicates with hormone substitution to start the transition. Being An Emotional Shelter. It is evident that the relatives are in a sphere together with the care seeking individual and their mental ill-health during the prolonged process. Various participants raise the need of an external emotional harbouring function for the care seeking person’s psychiatric ill-health during the process. Lack of this leads to vulnerability and dependence on the person’s own supportive social network. There are two separate harbouring processes going on at the same time, firstly the participant’s own feelings and secondly the well-being of the care seeking individual. And on one level I wish there could be a team around these patients so that it doesn’t have to be as it has so far. (…) seven very lonely years with a health care system that has not been very understanding, just sending N home, once every six months contact with a doctor that just sends N home or writes a new prescription. P6 Participants raise how the process has focused on logistics concerning referrals and time plans instead of concentrating on the care seeker’s mental illness, such as suicidal ideation. There were also participants problematizing the scenario in which the care seeker had no supporting family or other relatives, and that the mental illness in those cases most probably would have been aggravated to an extent where psychiatric inpatient care would be necessary. Because now there is such a focus on that, and every time she sees her psychologist there has been so much focus on schedules and plans, yeah what will happen next and what is really decided. But her mental illbeing, … that she is suicidal, no one has been able to work on that. P3 Frustration was expressed over deficiencies in the system, especially around things they feel should just work. Furthermore, there is a worry about referrals not reaching the right person and lack of information about things happening (or not) during the process. The lack of information is amplified by the fact that multiple healthcare instances are involved in the transgender healthcare system. Being A Health Care Coordinator . Taking on a coordinating function regarding referrals and applications during the consuming wait is described, especially when the care seeker experiences a deteriorated mental wellbeing as part of the process. Some relatives adopt a driving role, handling multiple contacts with several different clinics, a very complex situation. The loss of access to information and the right to represent one’s next of kin after the care seeker becomes of age – even though the care seeker wishes the relative to do so – is also problematized here. It is evident that the participants feel responsible for the process going smoothly through their own knowledge and ability to drive the process on, which becomes consuming. Some even feel it can be crucial for the outcome of the process that the close relatives are able to acquaint themselves with the process and push it forward. And there is so much around the referrals and where to seek care and where do you find out about that and it is constantly changing, there is a lot to deal with. Obviously for the transgender person themselves but I think they are so involved in their own process that they need it to work through support from their relatives and then I have to try to keep track on, I don’t even... Yeah it’s difficult. P9 One positive effect in the relatives’ role as healthcare coordinator is a feeling of participation in the process, and thereby a deepening of the relationship with the transgender individual. Some express a positive effect on the care seeker as they are forced to take responsibility in contact with authorities, something that has previously been difficult in many cases. The participants are, however, agreed on the fact that a better coordinating role in the health care team would have been of great importance. ... it might not be the right word, but if you can use that word a “project manager” that holds everything together and that you could actually turn to. Partly the whole process but also someone you can rely on, who knows the steps of the process and all people involved and so on. Instead of this having to chase a new person to find the next right step... P1 Another returning subject is the feeling that the care seeker knows more about the process than some of the care givers and is forced to fight for their rights because of this. “... and then she has put so much time and energy on all this as well, just to... just to get what she is entitled to” P3 Formal Reception The theme Formal Reception describes experiences of the various formal aspects of the transgender healthcare process. The following themes are identified: “Personal Treatment”, “Support from The Healthcare System”, “Stereotypic Gender Roles” and “Alternative Ways of Communication” . Personal treatment The participants are unanimous in describing the reception of their transgender relative as excellent – once you can finally get an appointment – apart from isolated staff members. I believe, I believe that you in that care need to separate the process from the reception (…) I would say throughout positive, definitely positive when it comes to the reception (…) the criticism we would like to bring forward that I see as the weakness, that is that when you finally get to meet people, when things finally happen, then the process works really well. What malfunctions to a great extent in the process is actually the time in between these active periods. P1 Participants who have attended meetings with the transgender healthcare system, or heard about these meetings from their transgender relative, state that the personal reception is perceptive, with adequate knowledge on transgender experiences. This care has not been adequately prioritized but the people who actually work there are, in my perspective, good at what they do and treat the patients well. P10 Support from The Healthcare System. How the relatives relate to support from the healthcare system differs. Some feel no need to get education or support asides from their own personal network, while others express strong wishes for more support and knowledge. A few of the participants mention that the only person available for questions about gender dysphoria was the care seeking individual, and that this puts too much responsibility on the transgender person. And to be able to say, because I cannot tell N that, to say things you are contemplating on, some things... (…) because I think otherwise there might be a risk that you put that on your child, and keep asking, one time too many... P2 Several participants mention that support has been available but that there are logistical or geographical difficulties in reaching that support. No support at all! Because then I got, then I know that there is some kind of group there in [town], but that is like 1,5 hours away for me, to drive there, one of these parent-groups, that I feel I should, when I think about it I feel I should really have been there, it can be so incredibly lonely... P2 The feelings raised by the relatives who want more support is above all loneliness and vulnerability, and the feeling that the healthcare system fails to accommodate their needs. Stereotypic Gender Roles. A recurrent feeling is that there is an expectation from the transgender care to act a certain way regarding gender roles or expressions. The word “stereotype” is re-emerging through the interviews, and there is a feeling that the questions posed during the evaluation are not motivated which leaves the care seeker wondering why those questions are even asked. Because then you are in the position that like what will happen if I say that in this situation, what kind of image do they want to create about... N, I mean. Why is it important for them to know these things? P2 This leads to a feeling of the healthcare system having a perception on how to “make” a certain gender, and to get through the assessment period and through to the gender-affirmation treatments the transgender person – and their relatives – need to adapt their own gender socialization into a predesigned template. Alternative Ways of Communication. In this theme, a wish for continuity and other ways of communicating is evident. Suggestions are mentioned, such as the opportunity to chat. That is also a detail that will probably differ from individual to individual, but... when N felt that contact with the rest of the world was the hardest, when it burdened him the most psychologically, it would definitely have made everything a lot easier if there would have been other ways than just calling on the phone, to contact the healthcare system... the messenger service did not work, at least not at first during his process... I mean the possibility to chat, to just send an email would have done a lot for the situation N was in at that time. P1 Difficulties to make new social contacts is an aspect, another that is mentioned is the overall risk to be wrongly gendered by new healthcare professionals. Discussion Relatives of transgender care seekers experience evident flaws in the structure of the transgender healthcare system; firstly, elongated waiting times without information, lack of coordination and the feeling of needing to have high levels of competence yourself to instigate the process. These flaws lead to a strain on the relatives, who are required to substitute the emotional and coordinating function that the health care system should have provided. The long waiting times and the evident lack of coordination in the health care system is a recurring theme in Swedish literature. A report from the Swedish National board of health and welfare ( 12 ) has demonstrated evident regional differences in waiting times, assessment times and praxis regarding the contents of the transgender care, as well as a lack in national care programs. After the said report, National guidelines for the care of people with GD were developed in 2015 ( 5 ), to standardize the transgender care. In the following national investigation about the application of these national guidelines, the assessment was that prerequisites for implementing the recommendations were not possible due to lack of resources, and hence the national guidelines were criticized for shortage of bearing with reality. In 2017, transgender healthcare teams were interview by the National board of health and welfare to evaluate how the recommendations were implemented into daily care. It was apparent that the recommendations were well known among these teams, but that further distribution to the rest of the (non-transgender) healthcare was desirable ( 13 ). Furthermore, the report made it apparent that the number of care seekers had increased markedly, but that the resources were continuously low. The participants describe how life is put on hold for the care seeking individual, and that this is even more evident for the transgender individuals who are on the verge of entering adult life, or in other ways at a changing point in their lives that involves a new social context, such as starting a new job or a university education. For the participants defraying the top surgery out of their own pocket, to let their partner or child pass in public situations, this is even more explicit. Self-medicating with sex hormones bought online before getting access to the assessment and treatment from the transgender care is not uncommon, due to the psychological suffering of untreated gender dysphoria ( 14 ). To problematize the impact of waiting times for relatives of transgender care seeking individuals, we must first consider the waiting times in the perspective of the caregiver as well as the care seeking individual. Waiting for gender affirmative care/treatment has previously been described as abidance in an interstice, where life has no movement, waiting to start the real, active life. This wait can be perceived as more strenuous than the actual transgender experience. The transgender person’s wait for care is different from waiting for other healthcare contacts and treatments since referrals, assessments and treatments for the transgender person are closely connected with the correction of anatomical parts of the body, and through this passing in life and in relation to one’s own identity. The commencement of passing is therefore perceived as acute, and self-medication as well as privately paying for top surgery becomes an important means to escape more waiting ( 15 ). It is evident that the excruciating waiting impairs the psychological well-being of the transgender care seeking individual, which has been illustrated in previous Swedish studies on transgender experiences. In a study by Linander from 2018, the participants describe a deterioration in mental wellbeing during the process that is not taken care of by the health care system, but the responsibility is shifted to the transgender care seeking individual and his/her relatives ( 16 ). The same study suggests an external therapeutic party, not involved in the actual transgender assessment, and points out that it is the long waiting times as well as the lack of coordination and competence that causes the worsening in mental status. In our study, the results distinctly point to the need for the relatives to assume contact with the healthcare system and function as an emotional shelter, when the transgender care fails to do so. This can, in combination with the relative’s own emotional process, in many cases lead to an impairment of the relative's own mental wellbeing. The social support of the transgender care seeking individual is an important part of the process, evaluated by the counselor in one of the first visits. Despite this, wellbeing of the relatives is often neglected. We believe that the wellbeing of both the care seeking individual and the relatives needs to be addressed by the transgender healthcare system, while at the same time expanding and distinctly offering targeted support for relatives. The fragmentation of the process and the interpretation that the care seeking individual sometimes knows more than the care givers has been described previously in Swedish qualitative studies on transgender experiences. Linander has described how the participants are forced to become their own project leader with a driving role and extensive knowledge on the process, in line with the information from our participants ( 16 ). The emerging of doubt regarding the caregiver’s knowledge/professionalism on transgender care is brought up by one of the participants in Linander’s study, where suspicion about the fact that you need to put pressure on the caregivers to emphasize that you are in dire need of gender affirming treatments is raised. Hence, the need to persuade or press the caregiver is well known, and if/when the transgender care seeking individual is experiencing a degradation in mental status due to the elongated process, the relatives must take on that pushing role. One component in the lack of coordination is the demand for the relative to know in essence everything about the transgender care system, to act as a project leader. This is very much depending on the individual’s own resources and contributes to inequality in the health care system. If the care seeking individual is over 18 years old, information is not available to the relative due to confidentiality laws, which are interpreted differently in different parts of Sweden. Another aspect of healthcare coordination is the transmission of information. It is crucial that information is easily transferred between units in this type of complex care, both between child/adolescent psychiatry and adult psychiatry, different clinics collaborating in the transgender care, and between the highly specialized care and the general practices in smaller cities. Some participants in our material have stated that they need to make sure the medical history is correct and that the referrals are sent and received, among other things. Hence, it might be that part of the perceived lack in knowledge is in fact lack of communication between different care facilities. The participants unanimously stated that they would wish for a specific caregiver functioning as a coordinator for information and referrals, to relieve the relative of this burden. Here it is also important to stress that the lack of communication and information creates a sense of the healthcare system exercising power over the care seeker; the relationship dynamics where the care seeker is dependent on the doctor, while the doctor acts as a gate keeper for further gender affirming treatments and legal gender assignment. This, in turn, can undermine the autonomy of transgender individuals. Yet one more important component regarding communication and knowledge has to do with information about transgender experiences and gender dysphoria to the relatives. Some of our participants feel they need to turn to their transgender relative to establish understanding, hence putting a strain both on the transgender person and on their relationship. As of today, the Swedish transgender care is centralized, with six national units, with a plan to reduce these to only three units. This is part of a larger national effort to concentrate all highly specialized care in Sweden, to enhance knowledge, quality and patient safety, and to reduce inequality of care between regions. This has been discussed and problematized in Swedish media by caregivers within the transgender care system, among others ( 17 ). Some participants in our study have pointed out that geographical distance can be a hinder to participate in family groups, as well as the possibility for extra support for the care seeking individual, if he/she/they experiences a deteriorated mood during the process. The process is long, with several different visits, and travelling when not fully transitioned can be psychologically stressful, leading to an increased burden on the relatives, especially if no alternative ways of communication are available. The participants in our study suggest options such as video visits or chat functions as a supplement to standard care, suggestions that seem more than reasonable in light of the recent pandemic and the leap forward in distance communication we have seen as a consequence. The participants describe questions during the process that are perceived as stereotypical and old-fashioned and accompanied by the feeling that you should answer in a certain way. This had been described previously, often in relation to earlier diagnostic criteria such as “aversion to one’s own genitals” ( 15 ). The participants in the current study feel the questions lack meaning and are not motivated by the caregivers. Considering the current situation with power asymmetries between doctor and care seeker communication, understanding about gender expression and cis normativity as well as motivating different parts of the process are all the more important. Limitations The study population emanates from the care seeking individuals themselves. This will result in a selected group of relatives with a positive view on gender dysphoria issues, wanting a better transgender care. In our material it is also evident that the participants have a strong social support network in general, and/or their own emotional or material resources to be able to support their transgender family member. The usage of thematic analysis is dependent on the researchers’ own competence and ability to going beyond a description of the data to analysis and a valid interpretation. However, the thematic analysis builds on the fact that the researchers use themselves as instrument for the analysis. A strength in this respect is that two of the researchers are psychiatrists, one (the interviewer) without any relation to the transgender care. Two of the writers have experience in qualitative studies and literature/gender studies. However, all writers are cisgender, thus possibly – although not intentionally – incorporating cisnormativity into the analysis. All writers are clinically active, which may have caused a view from the healthcare perspective instead of focusing on embodied experiences. Selection-wise it would have been beneficial to involve perspectives from relatives of non-binary individuals, since the health care system has a long history of excluding this group. Conclusion Long periods of waiting with in-between silence and lack of healthcare coordination leads to the care seeking individuals and their relatives having to substitute deficiencies in the transgender care system. Thus, much of the process is depending on the care seeking individuals’ social support system and their own ability to drive the process forward. Besides from a strain on the relatives, this leads to unequal care. We clearly see the need for a coordinating function within the health care system, to function as a “project leader” during this complex process, but also as a supporting function for both the care seeker and the relatives. The psychological wellbeing of the care seeking individual as well as the relatives needs to be addressed. Hence, good knowledge on gender dysphoria is crucial both in general psychiatry and in general practice healthcare. Since the healthcare strives to be patient-centred and to cherish autonomy, more discussion on power asymmetries and one’s own position is needed. One simple measure to enable a more equal meeting between doctor and patient would be to always inform about waiting times, the reason behind these and to motivate all steps of the process. Declarations Ethics approval and consent to participate All participants have received oral and written information about the study, and have given informed written consent to participate. The study protocol and interview guide were approved by the Swedish Research Ethics Review Board (Dnr 2019-03435). Consent for publication Not applicable. Availability of data and materials The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request. Competing interests The authors declare that they have no competing interests. Funding Not applicable. Authors’ contributions All authors have read and approved the final manuscript. SS and FC designed the study protocol. KM, CO and SS performed the initial analyses and KM and SS wrote the first draft of the manuscript. All authors contributed to the finalization of the analyses. Acknowledgements Not applicable. References Arcelus J, Bouman WP, Noortgate WVD, Claes L, Witcomb G, Fernandez-Aranda F. Systematic Review and Meta-Analysis of Prevalence Studies in Transsexualism. European Psychiatry 2015. American Psychiatric Association. 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Body lines: Gender, transsexualism and body in stories about gender affirming treatments (Swedish: Kroppslinjer: Kön, transsexualism och kropp i berättelser om könskorrigering). Makadam 2011. Linander I. It was like I had to fit into a category People with trans experiences navigating access to trans-specific healthcare and health. Umeå University 2018. Swedish public service television company (SVT). (2021) Debate on centralizing transgender care SVT. https://www.svt.se/nyheter/lokalt/vasterbotten/forslaget-ingen-konsindentitetsmottagning-norr-om-stockholm . Additional Declarations No competing interests reported. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-3948738","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":273705797,"identity":"b04b0d11-fdf4-434a-8e78-387674e3cc0d","order_by":0,"name":"Kaberi Mitra","email":"","orcid":"","institution":"Uppsala University","correspondingAuthor":false,"prefix":"","firstName":"Kaberi","middleName":"","lastName":"Mitra","suffix":""},{"id":273705798,"identity":"e78caf15-7224-4e24-aa12-680e8ad95329","order_by":1,"name":"Fotios C Papadopoulos","email":"","orcid":"","institution":"Uppsala University","correspondingAuthor":false,"prefix":"","firstName":"Fotios","middleName":"C","lastName":"Papadopoulos","suffix":""},{"id":273705799,"identity":"6dc31801-c2bd-4032-b610-188b1d279b48","order_by":2,"name":"Caisa Öster","email":"","orcid":"","institution":"Uppsala University","correspondingAuthor":false,"prefix":"","firstName":"Caisa","middleName":"","lastName":"Öster","suffix":""},{"id":273705800,"identity":"aff2ceac-a300-496d-ab9f-24edfb000eda","order_by":3,"name":"Sara Sylvén","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA60lEQVRIiWNgGAWjYBADGSBmfECSFh4gZjYgWQubBFFK5dvPPvzA8Ocwj8Hx3mPVBRWH8/kZeMwkGP7Y4NRicCbdWIKxDajlzLm02zPOHLac2QDUwtiWhlsLQxqDBGPDYR7JGTlmt3nbDhsYHABpaTiM22H9z5h/gBwmOf+NWTHvP6gWhj//cXvmRhrQ12yHefgleMyYeRtgWtgO4HbYjWdsFolt6Tz8PDnG0jzH0g0km9mKgSLJeByWxnzjwx9rOTb2M4afeWqsDfjZmzcCRexwOwwEEhiakXjMYBGCoI6wklEwCkbBKBi5AAA3YEerM95L4wAAAABJRU5ErkJggg==","orcid":"","institution":"Uppsala University","correspondingAuthor":true,"prefix":"","firstName":"Sara","middleName":"","lastName":"Sylvén","suffix":""}],"badges":[],"createdAt":"2024-02-11 15:16:44","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-3948738/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-3948738/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":51412963,"identity":"ed164545-0600-4afc-b498-31af41d6bd65","added_by":"auto","created_at":"2024-02-21 05:54:24","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":17779,"visible":true,"origin":"","legend":"\u003cp\u003eOverarching theme with themes and subthemes identified in the thematical analysis.\u003c/p\u003e","description":"","filename":"Onlinedrawingimage1.png","url":"https://assets-eu.researchsquare.com/files/rs-3948738/v1/fa98047b7bf6954f023742b2.png"},{"id":51413337,"identity":"01c4b32d-c293-46eb-89f9-a509ae7afb2a","added_by":"auto","created_at":"2024-02-21 06:02:25","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1194682,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-3948738/v1/17960cf0-6398-4837-87b0-90a6559977c6.pdf"},{"id":51412962,"identity":"90c248f3-5974-4a5a-ab58-1b0be7154a23","added_by":"auto","created_at":"2024-02-21 05:54:24","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":12953,"visible":true,"origin":"","legend":"","description":"","filename":"AppendixBMC.docx","url":"https://assets-eu.researchsquare.com/files/rs-3948738/v1/f6970300d2fc0a38ac0386c4.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Is Someone Else Going to Tell Him He Is A Boy? Relatives’ Views on Swedish Transgender Healthcare","fulltext":[{"header":"Introduction","content":"\u003cp\u003eDuring the last two decades there has been a notable increase in the number of individuals with gender dysphoria (GD) symptoms seeking gender-affirming healthcare (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). This has increased the interest in medical studies within the transgender healthcare, as well as making the transgender healthcare an object for criticism from the public eye in Sweden. GD is currently a psychiatric diagnosis (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e), hence in order to get access to gender affirming treatment the care seeker needs to undergo clinical evaluation (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). Studies conducted in a Swedish context have problematized the fact that the caregivers assume a gatekeeping function; the problem being the evaluation itself as well as the healthcare structure (4).\u003c/p\u003e \u003cp\u003eClose relatives of individuals with GD symptoms are part of an important support system, and previous studies implicate that adequate support from family members can improve both emotional well-being, treatment outcomes, and integration into society (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). According to a recent study of transgender and gender diverse people with a story of detransition, the vast majority reported that their detransition was driven by external pressures including lack of family support (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). Previous studies on relatives of individuals with GD are mostly focused on parents, since the underage care seeker is dependent on its legal guardian (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). A few studies have involved partners or children of gender-affirming care seekers (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Studies focusing on the relative\u0026rsquo;s own view of the process, and in particular the transgender healthcare system, are lacking in the Swedish context.\u003c/p\u003e \u003cp\u003eThe aim of the current study was to explore relatives\u0026rsquo; views on the Swedish transgender healthcare system to further develop and enhance transgender healthcare in Sweden.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eData Collection\u003c/h2\u003e \u003cp\u003eThis study is a sub-study of the Swedish Gender Dysphoria Study (SGDS), a prospective multi-centre study (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). SGDS began in 2016 and has since then recruited participants from the six specialized transgender healthcare clinics in Sweden, to date approximately 500 patients. All care seeking individuals with ongoing contact with one of the recruiting sites, who were 15 years old or older and fluent in written and spoken Swedish have been eligible to be invited to participate. All participants were asked to give a consent to contact a close relative of their own choice for a separate interview. Recruitment of the relatives took place in April through June of 2020. The relatives were contacted by SS separately via consecutive selection. The relatives were given verbal and written information about the study, and informed written consent was obtained. No information on the care-seeker (such as gender identity or the transgender person\u0026rsquo;s status in the treatment process) was available at this stage. Approximately 80% of the relatives who were contacted gave consent to participate, and the interviews were conducted shortly after consent was obtained. The recruitment period ended when the last interviews appeared to not give any new information.\u003c/p\u003e \u003cp\u003e After consenting to participate, participants were interviewed individually via telephone by SS. The interview was conducted based on a semi-structured interview guide developed in collaboration with the Swedish Federation for Lesbian, Gay, Bisexual, Transgender, Queer and Intersex right (Appendix A). The participants were invited to freely speak about their experiences concerning relations, emotions, stigma, and the healthcare system. The interviews were recorded and saved on a secure server at Uppsala University Hospital. Interviews were 30 to 120 minutes long. For the current study, only the parts of the interviews focusing on the transgender healthcare were analysed.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eAnalytical approach\u003c/h2\u003e \u003cp\u003eThe recorded interviews were transcribed, anonymized, and analysed based on thematic analysis (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). The analyses began while listening to and transcribing the interviews (KM and SS). Thereafter, initial understanding appeared by reading through each transcribed interview multiple times. Initial codes were identified by manually cutting important quotes into paper strips and grouping them into themes. The codes were re-grouped several times by KM and SS, and thematic maps were created. All codes and themes were re-organized several times, until all authors agreed on the overarching theme and sub-themes of the study. Information power was deemed to be adequate when the last interviews confirmed previous results and appeared to not give any new information (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e), leading to in total eleven participants.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eAll eleven participants were adults, with different relations to the care-seeking individuals with GD symptoms; eight were parents, one spouse, one ex-spouse and one an adult child of the transgender person. Eight identified as women and three as men. The care seeking individuals with GD symptoms were all in different stages of the evaluation process; five with ongoing gender-affirming treatment, two had finished the process and were waiting for the approval of a new legal sex, and the final two had not yet started any gender-affirming treatment.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eEthical Considerations\u003c/h2\u003e \u003cp\u003eThe study protocol and interview guide were approved by the Swedish Research Ethics Review Board (Dnr 2019\u0026ndash;03435).\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eThe overarching theme is \u003cem\u003e\u0026ldquo;Balancing personal emotions and project management \u0026ndash; the role of relatives in transgender care\u0026rdquo;\u003c/em\u003e; the participants taking a role in a sphere together with the care seeker in the health system (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). The theme consists of two main themes: \u003cem\u003e\u0026ldquo;Juggling emotions\u0026rdquo;\u003c/em\u003e and \u003cem\u003e\u0026ldquo;Formal reception\u0026rdquo;\u003c/em\u003e. Subthemes were identified within each theme.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eJuggling Emotions\u003c/h2\u003e \u003cp\u003eThe theme describes the participants coping with the care process. The following sub themes are identified: \u003cem\u003e\u0026ldquo;Excruciating Waiting\u0026rdquo;, \u0026ldquo;Being An Emotional Shelter\u0026rdquo; and \u0026ldquo;Being A Health Care Coordinator.\u0026rdquo;.\u003c/em\u003e\u003c/p\u003e \u003cdiv id=\"Sec9\" class=\"Section3\"\u003e \u003ch2\u003eExcruciating Waiting\u003c/h2\u003e \u003cp\u003eThis subtheme represents periods of waiting associated with the transgender process, both before seeking medical care and within the transgender healthcare system.\u003c/p\u003e \u003cp\u003e \u003cb\u003eIt is such a long long time to wait, first waiting for the diagnosis and then... First you have to wait to come there and for the diagnostic process to be completed, then you must wait for referral and to be put on that waiting list. Then for the mastectomy, he was called in for a first examination and (\u0026hellip;.) of course then the waiting time for the operation was at least one year so we got news about long new waiting periods all the time. P9\u003c/b\u003e \u003c/p\u003e \u003cp\u003eThere is waiting both for the first appointment and in between the visits during the process, whereas several relatives emphasize that the care seekers have already waited a large part of their lives to openly come out, and to gather the strength to seek medical care.\u003c/p\u003e \u003cp\u003e \u003cb\u003eYou are already there waiting, and then you get told there is even more waiting. Okey, but I\u0026rsquo;m sitting here waiting already? Besides, there are quite a few that have... If you consider adults or young adults or kids, it is not like they just came up with this from one day to the other, they have waited a long time within themselves before even telling anyone. P9\u003c/b\u003e \u003c/p\u003e \u003cp\u003eThe relatives perceive the waiting times as unspecific, with long periods of time without any contact with the caregiver, resulting in an excruciating sensation.\u003c/p\u003e \u003cp\u003e \u003cb\u003eBecause... it has almost become a joke between the two of us about a typical three months-thing, \u0026lsquo;cause everything... the standard answer was always \u0026ldquo;in three months\u0026rdquo; regardless of what you were asking, and... I would say it was extremely frustrating, both to N and for me (\u0026hellip;) you never knew if the three months might be three months to get another notification about an additional three months, so... P1\u003c/b\u003e \u003c/p\u003e \u003cp\u003eSome of the participants mention the fact that the long waiting times can be caused by lack of resources, while others point out that they have been given no explanation at all. One evident consequence of the silence from the health care system and the long waiting times are feelings of hopelessness, frustration, and the sense that life is put on hold.\u003c/p\u003e \u003cp\u003e \u003cb\u003eWe have talked quite a bit about, N and I, that life is kind of paused somehow. It is a lot like a pause because with some things you cannot move forward, some things, just like identity-wise there is a feeling of starting your adult life when you are waiting for really radical things like operations and, yeah... P9\u003c/b\u003e \u003c/p\u003e \u003cp\u003eIsolated voices mention that some degree of delay in the assessment period may serve a purpose, to exclude reasons other than gender dysphoria. However, even these participants emphasize that the long waiting times are problematic. Among other things, some participants describe helping the care seeker pay for the top surgery out of their own pocket to pass in everyday life \u0026ndash; at least partly. Some participants have even revealed that the care seeker self-medicates with hormone substitution to start the transition.\u003c/p\u003e \u003cp\u003e \u003cb\u003eBeing An Emotional Shelter.\u003c/b\u003e \u003c/p\u003e \u003cp\u003eIt is evident that the relatives are in a sphere together with the care seeking individual and their mental ill-health during the prolonged process. Various participants raise the need of an external emotional harbouring function for the care seeking person\u0026rsquo;s psychiatric ill-health during the process. Lack of this leads to vulnerability and dependence on the person\u0026rsquo;s own supportive social network. There are two separate harbouring processes going on at the same time, firstly the participant\u0026rsquo;s own feelings and secondly the well-being of the care seeking individual.\u003c/p\u003e \u003cp\u003e \u003cb\u003eAnd on one level I wish there could be a team around these patients so that it doesn\u0026rsquo;t have to be as it has so far. (\u0026hellip;) seven very lonely years with a health care system that has not been very understanding, just sending N home, once every six months contact with a doctor that just sends N home or writes a new prescription. P6\u003c/b\u003e \u003c/p\u003e \u003cp\u003eParticipants raise how the process has focused on logistics concerning referrals and time plans instead of concentrating on the care seeker\u0026rsquo;s mental illness, such as suicidal ideation. There were also participants problematizing the scenario in which the care seeker had no supporting family or other relatives, and that the mental illness in those cases most probably would have been aggravated to an extent where psychiatric inpatient care would be necessary.\u003c/p\u003e \u003cp\u003e \u003cb\u003eBecause now there is such a focus on that, and every time she sees her psychologist there has been so much focus on schedules and plans, yeah what will happen next and what is really decided. But her mental illbeing, \u0026hellip; that she is suicidal, no one has been able to work on that. P3\u003c/b\u003e \u003c/p\u003e \u003cp\u003eFrustration was expressed over deficiencies in the system, especially around things they feel should just work. Furthermore, there is a worry about referrals not reaching the right person and lack of information about things happening (or not) during the process. The lack of information is amplified by the fact that multiple healthcare instances are involved in the transgender healthcare system.\u003c/p\u003e \u003cp\u003e \u003cb\u003eBeing A Health Care Coordinator\u003c/b\u003e.\u003c/p\u003e \u003cp\u003eTaking on a coordinating function regarding referrals and applications during the consuming wait is described, especially when the care seeker experiences a deteriorated mental wellbeing as part of the process. Some relatives adopt a driving role, handling multiple contacts with several different clinics, a very complex situation. The loss of access to information and the right to represent one\u0026rsquo;s next of kin after the care seeker becomes of age \u0026ndash; even though the care seeker wishes the relative to do so \u0026ndash; is also problematized here.\u003c/p\u003e \u003cp\u003eIt is evident that the participants feel responsible for the process going smoothly through their own knowledge and ability to drive the process on, which becomes consuming. Some even feel it can be crucial for the outcome of the process that the close relatives are able to acquaint themselves with the process and push it forward.\u003c/p\u003e \u003cp\u003e \u003cb\u003eAnd there is so much around the referrals and where to seek care and where do you find out about that and it is constantly changing, there is a lot to deal with. Obviously for the transgender person themselves but I think they are so involved in their own process that they need it to work through support from their relatives and then I have to try to keep track on, I don\u0026rsquo;t even... Yeah it\u0026rsquo;s difficult. P9\u003c/b\u003e \u003c/p\u003e \u003cp\u003eOne positive effect in the relatives\u0026rsquo; role as healthcare coordinator is a feeling of participation in the process, and thereby a deepening of the relationship with the transgender individual. Some express a positive effect on the care seeker as they are forced to take responsibility in contact with authorities, something that has previously been difficult in many cases. The participants are, however, agreed on the fact that a better coordinating role in the health care team would have been of great importance.\u003c/p\u003e \u003cp\u003e... \u003cb\u003eit might not be the right word, but if you can use that word a \u0026ldquo;project manager\u0026rdquo; that holds everything together and that you could actually turn to. Partly the whole process but also someone you can rely on, who knows the steps of the process and all people involved and so on. Instead of this having to chase a new person to find the next right step... P1\u003c/b\u003e\u003c/p\u003e \u003cp\u003eAnother returning subject is the feeling that the care seeker knows more about the process than some of the care givers and is forced to fight for their rights because of this.\u003c/p\u003e \u003cp\u003e \u003cb\u003e\u0026ldquo;... and then she has put so much time and energy on all this as well, just to... just to get what she is entitled to\u0026rdquo; P3\u003c/b\u003e \u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eFormal Reception\u003c/h2\u003e \u003cp\u003eThe theme Formal Reception describes experiences of the various formal aspects of the transgender healthcare process. The following themes are identified: \u003cem\u003e\u0026ldquo;Personal Treatment\u0026rdquo;, \u0026ldquo;Support from The Healthcare System\u0026rdquo;, \u0026ldquo;Stereotypic Gender Roles\u0026rdquo; and \u0026ldquo;Alternative Ways of Communication\u0026rdquo;\u003c/em\u003e.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003ePersonal treatment\u003c/h2\u003e \u003cp\u003eThe participants are unanimous in describing the reception of their transgender relative as excellent \u0026ndash; once you can finally get an appointment \u0026ndash; apart from isolated staff members.\u003c/p\u003e \u003cp\u003e\u003cb\u003e I believe, I believe that you in that care need to separate the process from the reception (\u0026hellip;) I would say throughout positive, definitely positive when it comes to the reception (\u0026hellip;) the criticism we would like to bring forward that I see as the weakness, that is that when you finally get to meet people, when things finally happen, then the process works really well. What malfunctions to a great extent in the process is actually the time in between these active periods. P1\u003c/b\u003e\u003c/p\u003e \u003cp\u003e Participants who have attended meetings with the transgender healthcare system, or heard about these meetings from their transgender relative, state that the personal reception is perceptive, with adequate knowledge on transgender experiences.\u003c/p\u003e \u003cp\u003e \u003cb\u003eThis care has not been adequately prioritized but the people who actually work there are, in my perspective, good at what they do and treat the patients well. P10\u003c/b\u003e \u003c/p\u003e \u003cp\u003e \u003cb\u003eSupport from The Healthcare System.\u003c/b\u003e \u003c/p\u003e \u003cp\u003eHow the relatives relate to support from the healthcare system differs. Some feel no need to get education or support asides from their own personal network, while others express strong wishes for more support and knowledge. A few of the participants mention that the only person available for questions about gender dysphoria was the care seeking individual, and that this puts too much responsibility on the transgender person.\u003c/p\u003e \u003cp\u003e \u003cb\u003eAnd to be able to say, because I cannot tell N that, to say things you are contemplating on, some things... (\u0026hellip;) because I think otherwise there might be a risk that you put that on your child, and keep asking, one time too many... P2\u003c/b\u003e \u003c/p\u003e \u003cp\u003eSeveral participants mention that support has been available but that there are logistical or geographical difficulties in reaching that support.\u003c/p\u003e \u003cp\u003e \u003cb\u003eNo support at all! Because then I got, then I know that there is some kind of group there in [town], but that is like 1,5 hours away for me, to drive there, one of these parent-groups, that I feel I should, when I think about it I feel I should really have been there, it can be so incredibly lonely... P2\u003c/b\u003e \u003c/p\u003e \u003cp\u003eThe feelings raised by the relatives who want more support is above all loneliness and vulnerability, and the feeling that the healthcare system fails to accommodate their needs.\u003c/p\u003e \u003cp\u003e \u003cb\u003eStereotypic Gender Roles.\u003c/b\u003e \u003c/p\u003e \u003cp\u003eA recurrent feeling is that there is an expectation from the transgender care to act a certain way regarding gender roles or expressions.\u003c/p\u003e \u003cp\u003eThe word \u0026ldquo;stereotype\u0026rdquo; is re-emerging through the interviews, and there is a feeling that the questions posed during the evaluation are not motivated which leaves the care seeker wondering why those questions are even asked.\u003c/p\u003e \u003cp\u003e \u003cb\u003eBecause then you are in the position that like what will happen if I say that in this situation, what kind of image do they want to create about... N, I mean. Why is it important for them to know these things? P2\u003c/b\u003e \u003c/p\u003e \u003cp\u003eThis leads to a feeling of the healthcare system having a perception on how to \u0026ldquo;make\u0026rdquo; a certain gender, and to get through the assessment period and through to the gender-affirmation treatments the transgender person \u0026ndash; and their relatives \u0026ndash; need to adapt their own gender socialization into a predesigned template.\u003c/p\u003e \u003cp\u003e \u003cb\u003eAlternative Ways of Communication.\u003c/b\u003e \u003c/p\u003e \u003cp\u003eIn this theme, a wish for continuity and other ways of communicating is evident. Suggestions are mentioned, such as the opportunity to chat.\u003c/p\u003e \u003cp\u003e \u003cb\u003eThat is also a detail that will probably differ from individual to individual, but... when N felt that contact with the rest of the world was the hardest, when it burdened him the most psychologically, it would definitely have made everything a lot easier if there would have been other ways than just calling on the phone, to contact the healthcare system... the messenger service did not work, at least not at first during his process... I mean the possibility to chat, to just send an email would have done a lot for the situation N was in at that time. P1\u003c/b\u003e \u003c/p\u003e \u003cp\u003eDifficulties to make new social contacts is an aspect, another that is mentioned is the overall risk to be wrongly gendered by new healthcare professionals.\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eRelatives of transgender care seekers experience evident flaws in the structure of the transgender healthcare system; firstly, elongated waiting times without information, lack of coordination and the feeling of needing to have high levels of competence yourself to instigate the process. These flaws lead to a strain on the relatives, who are required to substitute the emotional and coordinating function that the health care system should have provided.\u003c/p\u003e \u003cp\u003eThe long waiting times and the evident lack of coordination in the health care system is a recurring theme in Swedish literature. A report from the Swedish National board of health and welfare (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e) has demonstrated evident regional differences in waiting times, assessment times and praxis regarding the contents of the transgender care, as well as a lack in national care programs. After the said report, National guidelines for the care of people with GD were developed in 2015 (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e), to standardize the transgender care. In the following national investigation about the application of these national guidelines, the assessment was that prerequisites for implementing the recommendations were not possible due to lack of resources, and hence the national guidelines were criticized for shortage of bearing with reality. In 2017, transgender healthcare teams were interview by the National board of health and welfare to evaluate how the recommendations were implemented into daily care. It was apparent that the recommendations were well known among these teams, but that further distribution to the rest of the (non-transgender) healthcare was desirable (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). Furthermore, the report made it apparent that the number of care seekers had increased markedly, but that the resources were continuously low.\u003c/p\u003e \u003cp\u003eThe participants describe how life is put on hold for the care seeking individual, and that this is even more evident for the transgender individuals who are on the verge of entering adult life, or in other ways at a changing point in their lives that involves a new social context, such as starting a new job or a university education. For the participants defraying the top surgery out of their own pocket, to let their partner or child pass in public situations, this is even more explicit. Self-medicating with sex hormones bought online before getting access to the assessment and treatment from the transgender care is not uncommon, due to the psychological suffering of untreated gender dysphoria (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eTo problematize the impact of waiting times for relatives of transgender care seeking individuals, we must first consider the waiting times in the perspective of the caregiver as well as the care seeking individual. Waiting for gender affirmative care/treatment has previously been described as abidance in an interstice, where life has no movement, waiting to start the real, active life. This wait can be perceived as more strenuous than the actual transgender experience. The transgender person\u0026rsquo;s wait for care is different from waiting for other healthcare contacts and treatments since referrals, assessments and treatments for the transgender person are closely connected with the correction of anatomical parts of the body, and through this passing in life and in relation to one\u0026rsquo;s own identity. The commencement of passing is therefore perceived as acute, and self-medication as well as privately paying for top surgery becomes an important means to escape more waiting (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIt is evident that the excruciating waiting impairs the psychological well-being of the transgender care seeking individual, which has been illustrated in previous Swedish studies on transgender experiences. In a study by Linander from 2018, the participants describe a deterioration in mental wellbeing during the process that is not taken care of by the health care system, but the responsibility is shifted to the transgender care seeking individual and his/her relatives (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). The same study suggests an external therapeutic party, not involved in the actual transgender assessment, and points out that it is the long waiting times as well as the lack of coordination and competence that causes the worsening in mental status. In our study, the results distinctly point to the need for the relatives to assume contact with the healthcare system and function as an emotional shelter, when the transgender care fails to do so. This can, in combination with the relative\u0026rsquo;s own emotional process, in many cases lead to an impairment of the relative's own mental wellbeing. The social support of the transgender care seeking individual is an important part of the process, evaluated by the counselor in one of the first visits. Despite this, wellbeing of the relatives is often neglected. We believe that the wellbeing of both the care seeking individual and the relatives needs to be addressed by the transgender healthcare system, while at the same time expanding and distinctly offering targeted support for relatives.\u003c/p\u003e \u003cp\u003eThe fragmentation of the process and the interpretation that the care seeking individual sometimes knows more than the care givers has been described previously in Swedish qualitative studies on transgender experiences. Linander has described how the participants are forced to become their own project leader with a driving role and extensive knowledge on the process, in line with the information from our participants (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). The emerging of doubt regarding the caregiver\u0026rsquo;s knowledge/professionalism on transgender care is brought up by one of the participants in Linander\u0026rsquo;s study, where suspicion about the fact that you need to put pressure on the caregivers to emphasize that you are in dire need of gender affirming treatments is raised. Hence, the need to persuade or press the caregiver is well known, and if/when the transgender care seeking individual is experiencing a degradation in mental status due to the elongated process, the relatives must take on that pushing role.\u003c/p\u003e \u003cp\u003eOne component in the lack of coordination is the demand for the relative to know in essence everything about the transgender care system, to act as a project leader. This is very much depending on the individual\u0026rsquo;s own resources and contributes to inequality in the health care system. If the care seeking individual is over 18 years old, information is not available to the relative due to confidentiality laws, which are interpreted differently in different parts of Sweden.\u003c/p\u003e \u003cp\u003eAnother aspect of healthcare coordination is the transmission of information. It is crucial that information is easily transferred between units in this type of complex care, both between child/adolescent psychiatry and adult psychiatry, different clinics collaborating in the transgender care, and between the highly specialized care and the general practices in smaller cities. Some participants in our material have stated that they need to make sure the medical history is correct and that the referrals are sent and received, among other things. Hence, it might be that part of the perceived lack in knowledge is in fact lack of communication between different care facilities.\u003c/p\u003e \u003cp\u003e The participants unanimously stated that they would wish for a specific caregiver functioning as a coordinator for information and referrals, to relieve the relative of this burden. Here it is also important to stress that the lack of communication and information creates a sense of the healthcare system exercising power over the care seeker; the relationship dynamics where the care seeker is dependent on the doctor, while the doctor acts as a gate keeper for further gender affirming treatments and legal gender assignment. This, in turn, can undermine the autonomy of transgender individuals.\u003c/p\u003e \u003cp\u003eYet one more important component regarding communication and knowledge has to do with information about transgender experiences and gender dysphoria to the relatives. Some of our participants feel they need to turn to their transgender relative to establish understanding, hence putting a strain both on the transgender person and on their relationship.\u003c/p\u003e \u003cp\u003eAs of today, the Swedish transgender care is centralized, with six national units, with a plan to reduce these to only three units. This is part of a larger national effort to concentrate all highly specialized care in Sweden, to enhance knowledge, quality and patient safety, and to reduce inequality of care between regions. This has been discussed and problematized in Swedish media by caregivers within the transgender care system, among others (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). Some participants in our study have pointed out that geographical distance can be a hinder to participate in family groups, as well as the possibility for extra support for the care seeking individual, if he/she/they experiences a deteriorated mood during the process. The process is long, with several different visits, and travelling when not fully transitioned can be psychologically stressful, leading to an increased burden on the relatives, especially if no alternative ways of communication are available. The participants in our study suggest options such as video visits or chat functions as a supplement to standard care, suggestions that seem more than reasonable in light of the recent pandemic and the leap forward in distance communication we have seen as a consequence.\u003c/p\u003e \u003cp\u003e The participants describe questions during the process that are perceived as stereotypical and old-fashioned and accompanied by the feeling that you should answer in a certain way. This had been described previously, often in relation to earlier diagnostic criteria such as \u0026ldquo;aversion to one\u0026rsquo;s own genitals\u0026rdquo; (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). The participants in the current study feel the questions lack meaning and are not motivated by the caregivers. Considering the current situation with power asymmetries between doctor and care seeker communication, understanding about gender expression and cis normativity as well as motivating different parts of the process are all the more important.\u003c/p\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003eThe study population emanates from the care seeking individuals themselves. This will result in a selected group of relatives with a positive view on gender dysphoria issues, wanting a better transgender care. In our material it is also evident that the participants have a strong social support network in general, and/or their own emotional or material resources to be able to support their transgender family member.\u003c/p\u003e \u003cp\u003eThe usage of thematic analysis is dependent on the researchers\u0026rsquo; own competence and ability to going beyond a description of the data to analysis and a valid interpretation. However, the thematic analysis builds on the fact that the researchers use themselves as instrument for the analysis. A strength in this respect is that two of the researchers are psychiatrists, one (the interviewer) without any relation to the transgender care. Two of the writers have experience in qualitative studies and literature/gender studies. However, all writers are cisgender, thus possibly \u0026ndash; although not intentionally \u0026ndash; incorporating cisnormativity into the analysis. All writers are clinically active, which may have caused a view from the healthcare perspective instead of focusing on embodied experiences. Selection-wise it would have been beneficial to involve perspectives from relatives of non-binary individuals, since the health care system has a long history of excluding this group.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eLong periods of waiting with in-between silence and lack of healthcare coordination leads to the care seeking individuals and their relatives having to substitute deficiencies in the transgender care system. Thus, much of the process is depending on the care seeking individuals\u0026rsquo; social support system and their own ability to drive the process forward. Besides from a strain on the relatives, this leads to unequal care. We clearly see the need for a coordinating function within the health care system, to function as a \u0026ldquo;project leader\u0026rdquo; during this complex process, but also as a supporting function for both the care seeker and the relatives. The psychological wellbeing of the care seeking individual as well as the relatives needs to be addressed. Hence, good knowledge on gender dysphoria is crucial both in general psychiatry and in general practice healthcare.\u003c/p\u003e \u003cp\u003eSince the healthcare strives to be patient-centred and to cherish autonomy, more discussion on power asymmetries and one\u0026rsquo;s own position is needed. One simple measure to enable a more equal meeting between doctor and patient would be to always inform about waiting times, the reason behind these and to motivate all steps of the process.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cem\u003eEthics approval and consent to participate\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAll participants have received oral and written information about the study, and have given informed written consent to participate. The study protocol and interview guide were approved by the Swedish Research Ethics Review Board (Dnr\u0026nbsp;2019-03435).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConsent for publication\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAvailability of data and materials\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eCompeting interests\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFunding\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eNot applicable.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAuthors\u0026rsquo; contributions\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAll authors have read and approved the final manuscript. SS and FC designed the study protocol. KM, CO and SS performed the initial analyses and KM and SS wrote the first draft of the manuscript. All authors contributed to the finalization of the analyses. \u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAcknowledgements\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eNot applicable.\u003c/em\u003e\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eArcelus J, Bouman WP, Noortgate WVD, Claes L, Witcomb G, Fernandez-Aranda F. \u003cem\u003eSystematic Review and Meta-Analysis of Prevalence Studies in Transsexualism.\u003c/em\u003e European Psychiatry 2015.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAmerican Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorder. (5th edn, Vol. 2013).\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSwedish government. \u003cem\u003eKnowledge based and equal care. Conditions for a learning health care system (Swedish: Kunskapsbaserad och j\u0026auml;mlik v\u0026aring;rd. F\u0026ouml;ruts\u0026auml;ttningar f\u0026ouml;r en l\u0026auml;rande h\u0026auml;lso- och sjukv\u0026aring;rd.)\u003c/em\u003e SOU 2017:48.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLinander I, Lauri M, Alm E, Goicolea I. Two Steps Forward, One Step Back: A Policy Analysis of the Swedish Guidelines for Trans-Specific Healthcare. Sexuality Research and Social Policy; 2021.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ethe Swedish National Board of Health and Welfare (Swedish: Socialstyrelsen). Good care of adults with gender dysphoria. National clinical practise guidelines (Swedish: God v\u0026aring;rd av vuxna med k\u0026ouml;nsdysfori. Nationellt kunskapsst\u0026ouml;d). (Vol. 2015). Socialstyrelsen.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTurban JL, Loo SS, Almazan AN, Keuroghlian AS. \u003cem\u003eFactors Leading to Detransition Among Transgender and Gender Diverse People in the United States: A Mixed-Methods Analysis.\u003c/em\u003e (8 (4), 273\u0026ndash;280.) LGBT Health 2021.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHill DB, Menvielle E. You Have to Give Them a Place Where They Feel Protected and Safe and Loved: The Views of Parents Who Have Gender-Variant Children and Adolescents. Journal of LGBT Youth; 2009.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHarvey K. The other side of metamorphosis: An exploratory study of how partners of transsexuals experience transition. Illinois State University; 2008.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e\u0026Ouml;zel F, Indremo M, Karamanis G, Elofsson U, Beckman U, Fazekas A. \u003cem\u003eExploring gender dysphoria and related outcomes in a prospective cohort study: protocol for the Swedish Gender Dysphoria Study (SKDS).\u003c/em\u003e BMJ Open 2023.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBraun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology; 2006.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMalterud K, Siersma VD, Guassora AD. \u003cem\u003eSample Size in Qualitative Interview Studies: Guided by Information Power\u003c/em\u003e. (26 (13), 1753\u0026ndash;1760.) Qualitative Health Research 2016.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ethe Swedish National Board of Health and Welfare (Swedish. Transsexuals and other persons with gender identity disorders: Legal conditions for determination of gender indentity as well as the right to care and support (Swedish: Transsexuella och \u0026ouml;vriga personer med k\u0026ouml;nsidentitetsst\u0026ouml;rningar: R\u0026auml;ttsliga villkor f\u0026ouml;r fastst\u0026auml;llelse av k\u0026ouml;nstillh\u0026ouml;righet samt v\u0026aring;rd och st\u0026ouml;d. Socialstyrelsen). Socialstyrelsen; 2010.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ethe Swedish National Board of Health and Welfare (Swedish: Socialstyrelsen). Transgender individuals in Sweden. Suggestions for a better position in society as well as better living standards (Swedish: Transpersoner i Sverige. F\u0026ouml;rslag f\u0026ouml;r st\u0026auml;rkt st\u0026auml;llning och b\u0026auml;ttre levnadsvillkor). (2017:92). Statens offentliga utredningar.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAshley F. \u003cem\u003eGatekeeping hormone replacement therapy for transgender patients is dehumanising.\u003c/em\u003e (45(7), 480\u0026ndash;482.) Journal of Medical Ethics 2019.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBremer S.. \u003cem\u003eBody lines: Gender, transsexualism and body in stories about gender affirming treatments (Swedish: Kroppslinjer: K\u0026ouml;n, transsexualism och kropp i ber\u0026auml;ttelser om k\u0026ouml;nskorrigering).\u003c/em\u003e Makadam 2011.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLinander I. \u003cem\u003eIt was like I had to fit into a category People with trans experiences navigating access to trans-specific healthcare and health.\u003c/em\u003e Ume\u0026aring; University 2018.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSwedish public service television company (SVT). (2021) \u003cem\u003eDebate on centralizing transgender care\u003c/em\u003e SVT. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.svt.se/nyheter/lokalt/vasterbotten/forslaget-ingen-konsindentitetsmottagning-norr-om-stockholm\u003c/span\u003e\u003cspan address=\"https://www.svt.se/nyheter/lokalt/vasterbotten/forslaget-ingen-konsindentitetsmottagning-norr-om-stockholm\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-public-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pubh","sideBox":"Learn more about [BMC Public Health](http://bmcpublichealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pubh/default.aspx","title":"BMC Public Health","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"gender dysphoria, gender incongruence, transgender healthcare, gender-affirming healthcare, relatives","lastPublishedDoi":"10.21203/rs.3.rs-3948738/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-3948738/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eThe increasing incidence of the medical diagnosis Gender Dysphoria has led to public debates in Sweden, questioning an already vulnerable group. This study explores relatives\u0026rsquo; views on the Swedish transgender health system, in order to identify factors that can be improved.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eAn interview guide was created together with the Swedish Federation for Lesbian, Gay, Bisexual, Transgender, Queer and Intersex rights. Care seekers with gender dysphoria included in the Swedish Gender Dysphoria Study were asked to give consent for an interview with a relative of their own choice. Eleven interviews were conducted. The material was examined using thematic analysis.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eThe waiting times are long without clear information and lacking coordination. This compels the relative to substitute the deficiencies in the system, especially as an emotional shelter and a coordinating function. Stereotypic questions are being asked without motivation and geographical distances hinder participation in family support groups.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eA coordinating function in the transgender healthcare system would be beneficial for both the care seekers and their relatives. The system flaws have negative impact on the mental health of both the care seeker and the relative. It is important that care givers are transparent about the waiting times and motivate all parts of the process.\u003c/p\u003e","manuscriptTitle":"Is Someone Else Going to Tell Him He Is A Boy? Relatives’ Views on Swedish Transgender Healthcare","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-02-21 05:54:20","doi":"10.21203/rs.3.rs-3948738/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-12-05T13:59:50+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-09-04T08:11:01+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"183254887982077520496136287985059869632","date":"2024-08-18T04:40:36+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-07-24T03:53:38+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"169924605263096006705439772042331852982","date":"2024-07-04T10:02:19+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-03-01T15:32:51+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-02-29T12:55:10+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2024-02-19T15:27:19+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-02-19T15:13:02+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Public Health","date":"2024-02-11T15:09:14+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-public-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pubh","sideBox":"Learn more about [BMC Public Health](http://bmcpublichealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pubh/default.aspx","title":"BMC Public Health","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"c375e1bb-4e77-4419-86c2-7cc3b96ab16f","owner":[],"postedDate":"February 21st, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-03-11T13:55:21+00:00","versionOfRecord":[],"versionCreatedAt":"2024-02-21 05:54:20","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-3948738","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-3948738","identity":"rs-3948738","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}