Transgender people in Swedish healthcare: The experience of being met with ignorance

Introduction

Transgender is an umbrella term used to describe people whose gender identity and/or expression differs from the gender assigned to them at birth.^1–4 In Sweden, a person who wishes to change gender will be diagnosed as transsexual, which is regarded as a psychiatric diagnosis. ⁵ Löfgren-Mårtensson ⁶ considered this to be a pathologisation of transgender people, which, according to the American Psychiatric Association, may cause distress and problems in coping with everyday life. ⁷

An increased number of people choose to be open about their gender identity, resulting in transgender people becoming more visible in society.^8–9 Proper estimates of the number of transgender people in Sweden are difficult to obtain since not all forms are registered. ¹⁰ Between 1992 and 2009, over 540 people in Sweden applied to correct their legal gender and the number of applications has been increasing every year. ⁵ Despite this development, transgender people continue to be a vulnerable group in society. ⁸ Several studies report experiences of exclusion, loneliness, and abandonment from early childhood among some transgender people. Some transgender people experience discrimination from their parents and some have been ejected from their homes as young adolescents.^{4–6,9,11–12} Several reports conclude that those who choose to be open about their gender identity often risk discrimination in parental relationships, family life, employment, the workplace environment, as well as violence and loss of relationships.^5,9,11–12 As a consequence, the general health of transgender people is below the level of that of the general population.^13–14 Similar observations have been reported, for example, in the USA, where transgender people suffer from mental disorders (e.g. depression and anxiety) more often than the general population. ¹⁵ Substance abuse problems are also common, which increases the risk for other diseases^4,15 and may lead to frequent contact with healthcare services. ⁴

Healthcare professionals working with transgender people may find that social security numbers and names do not match the patient’s gender identity, which may cause confusion. ¹⁶ Confirmation of the patient’s gender identity is important, as the opposite may cause the person to avoid healthcare contact in the future. ¹⁷ According to Darj and Nathorst-Böös, ¹⁸ transgender people are often treated with ignorance in their contacts with the health services, especially when they seek care that is unrelated to gender correction. The contacts tend to focus primarily on the person’s gender identity, rather than the actual cause of the contact. It can be considered offensive when questions about gender, genitalia, and treatments are irrelevant to the visit and steal focus from the person’s current problem. ¹⁷

According to the Swedish legislation, discrimination based on gender identity or expression is illegal. ²⁰ This law protects against harassment, indignity and disadvantageous treatment. The law also states that discrimination within the healthcare system is prohibited. ²⁰ Despite this law, transgender people are a group of patients at risk of being subjected to discrimination. ¹⁹

Research questions

Although previous studies have reported that transgender people are a vulnerable group in society,^9,11–12 the outcome of visits within the healthcare system has been scantily studied. Therefore, the aim of the study was to describe transgender people’s experiences in their meetings with healthcare professionals.

Method

Data analysis and rigour

All interviews were recorded on audiotape and thereafter transcribed verbatim. Each typed transcript was coded and checked for comparison with its corresponding audio file. Data were analysed using qualitative inductive content analysis. ²³ In the first step, meaning units, e.g. a word, sentence, or a whole paragraph with the same meaning, were identified. In the second step, meaning units were condensed into a description of their content. Next, all of the data, including meaning units and condensed meaning units, were read through by the authors separately, as important insights can emerge from the different ways in which several people look at the same data. ²⁴ Thereafter, the authors co-ordinated their separate analyses to obtain an understanding of the entire data, based on the aim of the study. Subsequently, the condensed meaning units were analysed and organised into categories based on similarities and differences. The main theme, as an expression of the latent content of the text, was understood to be a common core through the categories (Table 1). ²³ An example of the analytical process is shown in Table 2. Lastly, all authors, aiming at reaching a consensus on the findings regarding categories and themes reflecting the participants’ experiences of meetings with healthcare personnel, reviewed the analysis. When disagreements emerged, they were discussed until a consensus was reached, as a way of achieving trustworthiness.

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Table 1.

Content analysis of written reflections of transgender people on their experiences of treatment in connection with healthcare contacts.

Categories	Themes	Main theme
Feeling anxious before meetings with healthcare professionals Consequences of expectations	Expectations of meeting with healthcare professionals	Knowledge gap about transgender people among healthcare professionals
To be treated like anyone else To be confronted with ignorance	Experience of treatment by healthcare professionals
Avoiding seeking healthcare services Feelings of being exposed and being questioned by healthcare professionals	Consequences of meetings with healthcare professionals

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Table 2.

Example of the condensing and analysis process.

Meaning unit	Condensed meaning unit	Categories	Themes	Main theme
… then we have all those healthcare professionals that you have to educate by yourself, the midwife, for example, who asked me so many questions, if she had been told this in her schooling, yes, but by someone trained… then she might not have had to ask me all of those questions.	You have to educate them yourself. She would not have had to ask so many questions if she had received training on transgender matters.	To be confronted with ignorance	Experience of treatment by healthcare professionals	Knowledge gap about transgender people among healthcare professionals

Results

Discussion

The study revealed that attitudes towards transgender people among Swedish healthcare professionals vary between different types of care. For example, in gender reassignment clinics, the healthcare professionals were perceived as being predominantly negative, nonchalant and having a lack of compassion. In primary care, the experience was the opposite; the informants were often met with kindness, respect and dignity. The participants considered it important that healthcare professionals’ attitudes should always be characterised by openness. Polly and Nicole ¹⁹ highlighted the importance of patients always being treated with dignity, respect and compassion, and outlined that a basic principle to facilitate the first meeting is to ask the patient what pronoun and name is preferred, which is supported by other research.^10,16–17 When the healthcare professional validates the patient in such a way, a trusting relationship can be created between them, which is consistent with other studies highlighting that a sign of respect is to use an person’s name and the correct pronouns^10,16–17 and this is important for how the healthcare encounter will proceed. ²⁶

The findings indicated that most of the healthcare professionals that the participants had encountered have not always possessed adequate knowledge about transgender people. Consistent with previous studies, ¹⁸ the informants in this study stated that they often encountered ignorance when they sought treatment. A lack of education about transgender people in healthcare is common according to Alegria and may explain why participants find healthcare professionals’ ignorance so vast. ⁹ They perceived this ignorance as being very troublesome. Fossum pointed out that if healthcare professionals do not reveal their lack of knowledge, it could result in the patient experiencing insecurity in the meeting. ²⁶ The study indicated that some participants have concerns about future contacts with healthcare and therefore avoid seeking care when it is needed. This concern may stem from previous experiences of ignorant or unpleasant caregivers, but also from rumours of poor service. These results have also been reported by other researchers, who have shown that previous experience of poor treatment, as well as the rumours, may lead to transgender people being less likely to seek treatment.^18–19

The lack of knowledge among healthcare professionals, combined with the absence of general guidelines and training in the treatment of transgender people ⁵ may be the basis for the negative experiences that the participants in this study described. One example is an irrelevant focus, i.e. when the caregiver is unnecessarily focused on the patient’s gender identity, a phenomenon that could arise from ignorance. Darj and Nathorst-Böös pointed out that that healthcare professionals usually tend to be more focused on a transgender person’s gender identity rather than the actual reason for the visit. ¹⁸ Sometimes healthcare professionals’ own curiosity may overtake their professionalism, which can lead to inappropriate questions and statements. It is therefore important that healthcare professionals should recognise their own ignorance and let the patient’s needs take control. Studies have shown that transgender people with experiences of inappropriate questions and statements are more likely to avoid healthcare than other groups of patients.^4,18–19 Even rumours of a negative response from healthcare professionals have been shown to reduce confidence in the entire healthcare system. ¹⁹ Using simple and direct questions, healthcare professionals can reduce the risk of appearing to be curious and pushy. ¹⁷

When a transgender person seeks care, confusion about the patient’s gender identity may arise. In this study, it was the social security number that caused the most questioning of the gender identity of the participants. One reason for this is that the social security number is used almost universally for identification in Sweden. This has been described by Darj and Nathorst-Böös. ¹⁸ For example, a person may look like a woman and present herself with a female name, but have a male social security number. When the questioning of the patient’s gender identity occurs in places where other patients can hear, e.g. in a waiting room, the participants perceived it as being particularly disrespectful. Questioning of gender identity and revealing their birth gender may also be perceived as being offensive by the patient and is contrary to the National Board of Health and Welfare (NBHW) guidelines, which state that no one should feel offended in their contact with the health services. ⁵ Such issues are probably due to ignorance and unfamiliarity on the part of healthcare professionals and illustrate the need for education and action plans for the care of transgender people. The NBHW points out that a national care programme is needed and should be produced for the care of transgender people within the Swedish healthcare system. ⁵

The study indicated that the participants experienced treatment by gender reassignment investigators as being offensive and worse than that they experienced in general healthcare. They viewed the investigators as thinking stereotypically and normatively to the point that they felt compelled to exaggerate their gender expression to fit into stereotypical gender roles. The stereotypical and normative image of gender roles within the healthcare system was criticised in a report by the NBHW. ⁵ This is startling since the gender reassignment investigators are specialists for this group of patients. One explanation for this experience may be that the participants’ desire to live with their true gender identity probably makes the contact with the gender reassignment investigators more important than being treated for, e.g. an infection in the general healthcare system. Another explanation may be that gender reassignment investigators are bound to follow certain standards, e.g. which questions must be asked. Some of these questions could be perceived as offensive to patients who are already in a vulnerable situation. Gender confirmation treatment and/or corrected identification documents often affect a transgender person’s quality of life ²⁷ and therefore a disrespectful response at such a time may be more important than a good response from general healthcare providers.

This qualitative study has several limitations. First, the informants volunteered to participate in the study and therefore we do not know the views of those who did not want to talk about the subject. Using a so-called snowball method ²¹ to recruit informants interested in participating in the study resulted in a variation of age and experience. During the interviews, the informants answered the questions quite exhaustively and there was a great interest on their part in sharing their experiences. We obtained varied and multifaceted data that gave us the opportunity to explore and analyse the informants’ experiences in meetings with healthcare personnel. Another limitation is that we did not collect demographic data from the informants. If we had done so, we might have highlighted other factors of importance such as social class or ethno-cultural background. However, the picture of transgender people’s experiences of Swedish healthcare is both complex and far from unambiguous and therefore warrants further research.

Conclusions and relevance to clinical practice

The results indicated that ignorance about transgender people in general was widespread among healthcare professionals, and this may result in transgender people delaying or avoiding seeking medical help. The most important thing for the informants was to be treated like any other patient. Therefore, it is important to educate healthcare professionals in the subject to improve the treatment of transgender people. It is essential to use the correct name and pronouns and not to question them routinely, especially when other patients may hear the conversation. By also noting the person’s correct name and pronoun in the medical record, embarrassing meetings may be avoided and healthcare professionals may thereby avoid questioning transgender people when they are seeking medical help.

Through training, clear guidelines and the development of adequate journal systems, healthcare professionals’ understanding of the patient’s gender identity can be facilitated. All in all, this will reinforce the prerequisites for person-centred care in appointments with healthcare professionals within the healthcare system. However, describing and visualising the experiences of transgender people in their meetings with healthcare professionals may also contribute to decreasing the healthcare professionals’ lack of knowledge about their special needs. This may result in transgender people not feeling that they have to educate healthcare professionals. This knowledge may lead to more respectful meetings and also help transgender people to dare to seek medical help when needed.