About the text
- This article is by researcher Jacob Evje and research assistant Maren Kristin Nysæter at CENSE – Norwegian Research Centre for Sexual Health at the Department of Psychology, UiO.
- The article is based on the project LGBTQ+ health-seeking: A scoping review of health care needs, experiences and barriers.
A large amount of data indicates that LGBTQ+ people still experience higher rates of mental health issues, struggle with substance abuse, are victims of violence, and that these issues are often interconnected.
Engagement with and seeking help from formal health care services is a significant protective factor against the development and exacerbation of victimisation and negative health outcomes. Yet many LGBTQ+ people choose not to be open about their identity in interactions with health care services, find it difficult to ask for help, meet barriers in negotiating their identities when faced with normative structures, or do not seek help due to fear of discrimination, prejudice, or lack of competence from health care and victim-service providers.
Health care engagement and unmet needs
Scandinavian studies, like much of the international literature, show that queer people utilise more mental health care than heterosexual and cisgender people. There are also apparent differences between LGBTQ+ people, where bisexuals use mental health care to a greater extent than gay and lesbian people, while trans people use these services the most out of the queer subgroups. This is consistent with other findings that these groups report more mental health issues. Yet this should also be seen in light of the fact that the process of gaining access to gender-affirming care involves many interactions with the mental health sector, such as getting evaluations, diagnosis, prescriptions, and referrals.
Although Scandinavian qualitative studies illustrate that queer people have unmet needs for mental health support, both among those who have received some help and those who have not, none of the Scandinavian studies used quantitative measures of met and unmet needs. Here, international studies indicate that there are more queer people who experience unmet needs, or that they report a higher degree of unmet needs than heterosexual and cisgender people. That is to say, even though larger proportions of queer people use mental health care, there are also larger proportions who have not had their needs met.This may suggest that among those who need help, there is a larger proportion of heterosexual cisgender people who receive support. It may also indicate that among those who receive help, queer people are more likely to have additional unmet needs.
Factors influencing health-seeking behaviour
Queer healthcare seekers experience general structural barriers related to finances, long waiting times or difficulties in getting an appointment, and long distances to healthcare services. However, some studies show that such factors affect LGBTQ+ people more, and trans people in particular. Such barriers also affect each other, so that those who do not have money for private treatment have to wait longer for public treatment or have greater problems paying for the journey to health services that are far away.
Access to relevant services is an essential prerequisite for receiving support. Not everyone has access to actual services that they consider relevant. Some want unique services aimed at queer people, while others simply want supportive practitioners with relevant competence within their local services. There are also those who want healthcare providers who share their LGBTQ+ identity, as this can be perceived as safer.
Respondents strongly criticize the fact that some services are not available to everyone who wants them, such as the fact that gender-affirming care is not available for non-binary people. Many LGBTQ+ people express that they do not know where to go to get the help they want, or what is available. The studies point to a lack of information, with confusing procedures in the healthcare system. It is often the individual's own ability to find the right information that determines whether they get help.
Trust in the health care system is an important factor in health-seeking behaviour and is often a major individual barrier for LGBTQ+ people. Many describe a fear of experiencing discrimination or poor treatment, which prevents the person from seeking help. Lack of trust in the healthcare system can stem from knowledge of historical abuse, stories from friends, the media, or professional sources. These can also influence general opinions about whether the healthcare system is reliable and works as it should. Distrust can also come from previous bad experiences with the healthcare system. On the other hand, there are some who find that an existing relationship with a healthcare provider makes it easier to seek help. Furthermore, there are many who want healthcare services to more clearly signal that they are safe for queer patients.
Social support is also of great importance for seeking healthcare. This applies to both quantitative measures of perceived or lack of support, and specific stories about receiving advice and help from close relations to get health care. Many studies highlight the role of family, especially for younger individuals. LGBTQ+ connectedness is also portrayed as important for gaining access to information and concrete advice from people with similar experiences.
Various forms of social stigma are highlighted as barriers to health-seeking behaviour. There is stigma related to having mental health problems or needing help, which can be internalised into negative attitudes about health-seeking. For others, it is the normalisation of the health problems which has prevented them from seeing the need for professional help. In general, LGBTQ+ stigma in society, minority stress, stereotypes and misinformation also prevent some from seeking help, in addition to concerns about being "outed" and the consequences this will have on social relationships.
The studies identify several unique barriers related to LGBTQ+ experiences with violence, and especially intimate partner violence. Many who experience violence from a partner of the same gender, or who are in other types of queer relationships, struggle to navigate narratives about who can be the perpetrator and victim of such violence. If they are not a cis woman in a heterosexual relationship, many people fear that they won't be believed. Others describe that the relationship dynamic also makes it more difficult to identify the situation as violence.
Experiences with healthcare
The most consistent theme discussed in the studies was the competence of the practitioners and the healthcare system. Several considered the help they received to be unhelpful. Concrete stories are told of healthcare providers who did not have the necessary knowledge or experience to understand the patient's situation and provide the support they needed, or were unable to refer them to relevant services. This applied to various queer perspectives, sexual orientation, and especially gender identity.
Some described experiences with competent and helpful practitioners, and increased competence was pointed out by many as the most important factor in making experiences with the healthcare system better. However, there are other aspects of how healthcare personnel behave that impact whether patients experience the relationship as positive and professional. Regardless of competence, it is important that the provider is willing to learn and takes the initiative to do so without placing the responsibility on the patient. Positive experiences often involve that the patient feels seen and heard, is believed in and taken seriously, that practitioners show that they care, are empathetic and supportive, while the negative experiences are characterized by the treatment being judgmental and not adapted to individual needs.
Some experience treatment that is directly offensive to LGBTQ+ people, such as discrimination and rejection, homophobic or transphobic treatment. However, more commonplace experiences include misgendering and microaggressions from the healthcare system. In some cases, the identity of a LGBTQ+ person is not recognized or believed, and thus not addressed. Others find that too much emphasis is placed on identity where it does not feel relevant, and experience a form of pathologisation. Several encounters with LGBTQ+-supportive treatment are also described, where identity is accepted and recognized in the right way, and the patient is helped to deal with LGBTQ+-related problems.
Norms around sexuality and gender identity often affect the encounter with the healthcare system. Gendered structures make it difficult for many queer, trans and non-binary people to know which services they can use. Many experience providers who express heteronormative, cisnormative, and binary thinking, which complicates the process for the patient. There are also forms of "gatekeeping", which apply particularly to gender-affirming care. The patients feel that only a narrow narrative is accepted, that they must lie to get help, and are critical of processes which do not use an informed consent model.
Many of the same themes are reflected in patients' choices about coming out while receiving care. Those who keep their identity hidden may fear poor treatment, discrimination, or being outed. Some believe that the identity is not relevant and do not want it to be the focus, while others feel it would have been relevant, but think it would have consequences for treatment. Unique experiences are described in relation to group treatment, including that it can be difficult to come out in this context, and difficulties with being the only queer person in the group. Others point out positive experiences with such groups, such as the social support it provides, and that they can relate to the experiences of others. Long waiting times are generally seen as a problem for various services, and in some cases lead to people seeking treatment privately, abroad or from unauthorized services.
Finally, the studies highlight several intersectional experiences and challenges. While ethnicity is not explicitly mentioned as much as in the international literature, several of the Scandinavian studies look at the experiences of queer people with immigrant backgrounds, and some that are experiencing homelessness and poverty. In these contexts, lack of access to information is a significant issue, whether it is due to a lack of knowledge about specific services and procedures in the individual country, a lack of resources, or language barriers. The need for an interpreter when interacting with the healthcare system also leads to concerns about confidentiality, and uncertainty about whether what they say is explained correctly. There are several ways in which an unstable life situation can lead to one being rejected because one does not fit the norm. This also happens with individuals with combined health problems and diagnoses, for example when trans people with autism are not approved for gender-affirming care.
All in all, the studies make visible a range of barriers for LGBTQ+ people who seek help for their mental health in Scandinavia. With greater knowledge about these hindrances, we hope that measures can be put in place to ensure greater health equity for queer people in the region.