Summary

The situation for LGBTI people in the Nordic countries has changed radically in recent decades. This has led to increased access to social and legal rights, strengthened protection against discrimination, increased visibility and more opportunities to create organisations, groups and meeting spaces.  Despite this, studies show that a gender identity or sexual orientation that does not conform to conventional norms still significantly increases the risk of ill-health. In particular, bisexual and transgender people experience a higher degree of vulnerability and poorer mental and physical health compared to the majority population throughout their lives. How do these conditions affect older LGBTI persons’ prospects as they age, and what happens in their contacts with healthcare and social care?

The Nordic Council of Ministers has initiated a project that aims to increase knowledge about the living conditions and quality of life of older LGBTI people, especially in relation to their encounters with the healthcare system and social care. The Nordic Council of Ministers co-operation body Nordic Information on Gender (NIKK), located at the Swedish Secretariat for Gender Research at the University of Gothenburg has carried out the project. The report is a result of the project. The report is based on publications consisting of quantitative as well as qualitative studies published as scholarly articles, dissertations, anthology chapters, reports and books.

The report has two parts:

The overall aim of the first part of the report is to contribute to increased knowledge about the living conditions and quality of life of older LGBTI people in the Nordic countries, in particular in their encounters with healthcare and social care; and to provide a historical background to the situation we find ourselves in today. There are both similarities and differences between the Nordic countries when it comes to LGBTI people’s history, rights and living conditions. Some general features are that during the 1950s and 1960s, public sentiment was strongly anti-homosexual and there were few places where LGBTI people could meet. During the 1960s and 1970s, a more public LGBTI culture emerged in parallel with a more open gay movement. In the 1980s, all Nordic countries decriminalised homosexuality, but the outbreak of HIV and AIDS created new stigmas around homosexuality and the gay environment suffered many backlashes.

Several of the Nordic countries were some of the first to introduce legislation that permitted a legal change of sex and access to trans care after an investigation and diagnosis. But the legislation was also coloured by narrow gender norms. Today, the LGBTI environment is important for those who are older, and several Nordic countries have organisations that offer social and political meeting places specifically for older LGBTI people. These countries have also often been a driving force in getting the specific living conditions for older LGBTI people on the political agenda.

The results of studies show that LGBTI people, especially older bisexual and transgender people, feel more vulnerable and experience poorer mental and physical health throughout life, although there is some improvement with age. These factors can often be explained by minority stress, which means that people who are in a minority position can be subject to higher levels of psychosocial stress, which in turn affects their health.

When it comes to sexual health, this report highlights that the research on LGBTI-people often tends to focus on gay men, their sexual practices and other aspects such as norms around sex, consent, changes in sexual function due to diseases such as prostate cancer, and what it is like to age with HIV are investigated less. Qualitative studies can provide a deeper understanding of how these aspects affect the lives and well-being of older LGBTI people.

When it comes to older people who are ageing with HIV, from the research it emerges that these individuals often have very strong memories and experienced great losses in connection with the HIV epidemic in the 1980s. Although medical treatment has improved and HIV is now seen as a chronic disease in the Nordic countries, new challenges arise when ageing with HIV. People living with HIV express concern about how their health and healthcare will be managed as they get older and emphasise the importance of the healthcare system being well informed about HIV and related specific needs.

Generally speaking, older LGBTI people often find it difficult to feel trust in healthcare and social care and social services. This can be traced back to historical stigmatisation and pathologisation within the healthcare system. Trans people in particular have a special relationship with the healthcare system, as they need to go through an arduous process to access trans care. This process can be marked by binary gender norms and geographical limitations, which can affect their access to this care. For older trans people, this may also mean that they encounter ageist ideas during the trans care investigation. Multiple studies show that previous experiences of homophobia and/or transphobia in their contacts with the healthcare system and elder care lead to some older LGBTI people refraining from seeking the care they need. It is known that in some instances, some couples in same-sex relationships choose to avoid accompanying their partner to healthcare appointments to avoid discrimination.

Being open is often considered an important strategy in encounters with healthcare and elder care. However, there is individual variance in how open one is, and trust in the healthcare professionals they encounter is crucial to dare to come out. Older LGBTI people feel that healthcare and social care are often marked by heteronormative and cis-normative assumptions that render them invisible and result in perceived discrimination. A lack of knowledge about LGBTI identities and the right language to use in the healthcare system reinforces this invisibility.

Regarding elder care, there are concerns about the lack of knowledge about LGBTI issues, as well as fears to be poorly treated due to their sexuality or gender identity, both by staff and other residents. Among those who have experience of elder care, the research shows that discussions about sexuality and gender identity are rare and that responsibility for raising LGBTI perspectives in this encounter rests largely with the social care recipients themselves. Older LGBTI people are also worried about the lack of privacy in elder care, where staff often knock on the door and enter without waiting for an answer, limiting the possibility of engaging in intimacy and sexual activity.

Older LGBTI people’s relationships and networks greatly affect their well-being and health. International quantitative research has shown that LGBTI people with social support and a sense of belonging in their communities have better health and lower levels of depression and stress. Studies show that older LGBTI people in Denmark and Sweden often have less contact with their families and friends compared to heterosexual people of the same age. They also feel lonelier and lack emotional support to a greater extent. Many older LGBTI people stress the importance of ‘chosen families’, meaning those they have created in the form of important and meaningful relationships outside of their biological families. Friends often play a key role in these chosen families. Their chosen families provide social and practical support in everyday life.

Legal aspects are important, especially when older LGBTI people do not have legally recognised partnerships or marriages. This may mean that their chosen family lacks legal rights, and biological families can become involved in important decisions regarding their healthcare and estates. Wills and documents that set out LGBTI people’s wishes are therefore important.

For older trans people, there have been challenges linked to how these contexts have developed and often excluded them or set limits on how they were permitted to identify themselves. Differences between contexts that targeted homosexuals and those that targeted trans people have also affected older individuals’ experiences of belonging and community. The contexts that LGBTI people have found important during their lives often remain significant as they get older, and these relationships can serve to form chosen families that go beyond traditional family ties.

The purpose of the knowledge inventory in Part 2 is to look at what knowledge and skills concerning LGBTI people’s living conditions and gender and sexuality norms are found in healthcare and social sciences study programmes, and among active professionals in healthcare and social care in the Nordic countries.

The knowledge inventory is based primarily on relevant research from the literature searches conducted for this study, as well as relevant reports and other grey material from supplementary searches. The analysis has been supplemented with contextualising material: policy documents that regulate national intended learning outcomes for relevant professional study programmes at university level, as well as interviews and e-mail interviews with university employees and continuing professional development (CPD) providers. CPD courses are the channel through which many professionals without formal education gain knowledge, for example in the home care service and elder care.

There is relatively little research on what knowledge and knowledge perspectives concerning gender, sexuality, LGBTI people’s living conditions and ageing are available in different study programmes in the Nordic countries. The amount of research also varies greatly between the Nordic countries and the Faroe Islands, Greenland and Åland. The biggest lack is in studies that specifically investigate older people and ageing, and the studies included here therefore focus mainly on gender and sexuality perspectives.

Despite the fact that there are few studies of how knowledge about gender, sexuality and LGBTI people’s living conditions has been implemented in professional study programmes, there is a clear pattern in the material, regardless of the profession or country concerned: Whether students acquire such knowledge in their study programmes varies greatly and is often dependent on individuals. This is despite the introduction of new common guidelines for healthcare and social sciences study programmes with the aim of ensuring learning exchanges linked to equality in healthcare and social care services, and gender identity, gender expression and sexual orientation, for example.

Teaching materials in Scandinavian languages about sexuality are also important for this area to be included in the teaching according to many of the interviewed teachers. If you search for key publications concerning older LGBTI people’s living conditions, you find that they are included as course literature for some professional study programmes, which indicates a positive development.

In general, a majority of the studies show that professional practitioners are positive to LGBTI people being treated equally and with respect, and that knowledge is key to making this possible. On the other hand, there are large knowledge gaps in the field, where heteronormative thinking dominates, along with an equality rhetoric where everyone should be ‘treated equally’ with reference to the legislation and guidelines governing the specific service.

Healthcare and social care services are regulated by various laws, central government directives and municipal guidelines, in addition to professional practice guidelines for different professions. In general, today´s welfare policy discourses tend to emphasise that social services should facilitate greater user participation, empowerment and a focus on individual needs. Healthcare and social care services are dominated by person-centred care as a philosophical framework, where an empathetic perspective is to form the basis for meeting the patient’s basic psychological needs in the care of the person. There also seems to be a trend towards gender identity, gender expression and sexual orientation being included more often in government agencies’ policy documents that concern equal access to good health and equal healthcare, and in strategies for older people in certain Nordic countries.

All the included studies of professionals in healthcare, social care and social sciences professions highlight a significant lack of knowledge regarding gender, sexuality and LGBTI perspectives. These perspectives have been absent in their study programmes, particularly in compulsory courses. This leads to uncertainty when it comes to raising questions about sexuality and gender identity on one’s own initiative.

Higher education institutions offer some CPD courses and elective courses for professionals working in healthcare, social care and social sciences occupations that include knowledge about gender, sexuality and LGBTI perspectives. These focus in particular on occupational groups that encounter children and young people. CPD initiatives are also important because many in the elder care sector do not have higher education, or received their education some time ago, or did not acquire LGBTI perspectives from their study programmes.

CPD is currently provided primarily by civil society organisations, in particular LGBTI organisations and other organisations working with issues related to sexual and reproductive health rights (SRHR). In Sweden and Norway, the national LGBTI organisations have their own education units, and courses are offered in all the Nordic countries and in Åland to a greater or lesser extent. These education activities are mainly financed by state and municipal funding in most of these countries, while the Swedish Federation for Lesbian, Gay, Bisexual, Transgender, Queer and Intersex Rights (RFSL) offers courses as a limited company, where LGBTI certification comprises a considerable part of its contract education, largely for public sector activities. However, there is a limited qualitative knowledge base concerning how CPD initiatives actually impact healthcare activities.

Demand for courses and certifications has increased over the past five years according to the trainers interviewed for this study. This is a result of stricter anti-discrimination laws as well as explicit policy to increase competence in this area, and that the knowledge provided in professional study programmes is inadequate. This leads to a significant gap elder care service between nursing home for older people or requirements to work to prevent discrimination and being able to do so in practice. Civil society organisations that provide courses with central government or municipal funding talk about the pressures in this context, both in terms of the amount of funding provided and the possibility of continuity.

A positive trend is that LGBTI perspectives appear to be more often integrated into CPD courses or existing knowledge resources for healthcare and social care professionals who encounter older people. However, despite positive developments in integrating knowledge of LGBTI perspectives, gender and sexuality into central government and municipal resources for healthcare and social care staff, it is inadequate in relation to the knowledge needed by those working in these fields.

Based on the results and conclusions of the studies, this report compiles recommendations for policy and practice. A recurring need expressed in the studies, seen to the results, is for increased LGBTI competence in healthcare and social care. The recommendations are divided up to address different levels and concern everything from improving the language used and communication with the individual patient in the everyday encounter to improving trans care at a structural level. Based on the knowledge inventory in Part 2, the recommendations emphasise that a norm-critical inventory of existing study resources should be carried out; and that knowledge about the LGBTI perspective, life course, healthcare and social care should be included in professional qualification study programmes and CPD.

The Recommendation section ends with the conclusion that more quantitative and qualitative knowledge about older LGBTI people is needed. More longitudinal studies would also facilitate analyses of causal effects for the group of older LGBTI people and what effects cohort and generation have in relation to this. Based on the research overview, it is possible to conclude that knowledge from some countries – primarily Finland and Iceland, as well as the Faroe Islands, Greenland and Åland – is inadequate, and that from these contexts we need more knowledge about older LGBTI people. In view of the range of experiences in this group, in particular there is very little knowledge about older intersex people, where knowledge is currently virtually non-existent.