Voices and key messages from the high-level meeting

The high-level meeting gathered together participants representing governmental authorities and ministries, as well as academia and civil society. Over two half-days in Reykjavik, the participants were given the opportunity to hear about the latest research from the Nordic region, based on the new report, share their knowledge and experiences, and discuss challenges, the need for new measures, and the way forward. The aim was for the meeting to help strengthen and deepen Nordic cooperation between national actors to improve LGBTI people’s living conditions. The following sections summarise some key messages from the conversations, which were based on the questions below.

During a series of workshops, the participants at the high-level meeting identified a number of concrete knowledge gaps. The workshop groups consisted of meeting participants from different types of organisations with different functions. The topics summarised here are based on their reflections. This summary does not claim to be comprehensive, but these are some groups and themes about which we need more knowledge if we are to improve eldercare for all LGBTI people. 

During the meeting, it was stated that this Nordic report is a milestone that it would not have been possible to compile ten years ago due to a lack of data back then. And while there has been a huge improvement, there is still a lack of data in many areas in terms of inequality for LGBTI people, which results in significant gaps in the knowledge that we have. The following are some of the knowledge gaps and suggested measures related to ways of gathering knowledge, such as data and methods, identified by meeting participants.

An accessible measure for gathering more knowledge and data is to include minority statuses on more mainstream surveys in all the public health surveys in each Nordic countriy.

There is a need for more knowledge about methodology, and in particular how to ask questions about sexuality, gender identity, and gender expression in surveys, interviews, and other methods and still follow GDPR and other laws on privacy.

When surveys are sent out, there is always a risk of skewed samples. Who are the people responding within small groups and who are the people who do not respond? For instance, respondents tend to come from large organisations in big cities, and hence less is known about LGBTI people in rural areas. This calls for more diverse research methods and creative research designs in order to gather more, broader, and much-needed knowledge.

Many LGBTI people can feel survey fatigue and become tired of answering questions about their lives, especially if they are not involved in the research design. It is important to involve the community in research projects from the start.

There is a lack of research on healthcare professionals in relation to LGBTI issues. More research is needed, and this can also be a way to challenge attitudes and raise awareness among care staff.

It is important to find effective ways to communicate knowledge to the community, not just to gather knowledge from the target group but also to give knowledge back to the LGBTI community in communicative ways, especially because there are a lot of people who do not know their rights.

Due to the lack of knowledge and insufficient ways of gathering it, there are many groups and themes that we do not know enough about. These are some examples identified during the conversations between meeting participants. It is crucial that we develop ways to gather data and knowledge in order to improve people’s living conditions.

In existing Nordic research there is a lack of research on intersex people in eldercare. In an international context as well, research about older intersex people in care is scarce. Many intersex people struggle to find healthcare providers who are knowledgeable about intersex variations and who are sensitive to their needs. More research is needed, as well as knowledge and awareness-raising measures in practice.

Transgender healthcare is negatively affected by the fact that trans people are still pathologised in all of the Nordic countries. Another issue is transphobia among healthcare professionals, as well as a lack of knowledge about how to treat trans people correctly. Trans women’s situation should be highlighted specifically, as this group is often specifically targeted in hate speech and discrimination.

An intersectional approach is needed, for instance on LGBTI and ethnicity: For example, what happens when you lose your second language and are LGBTI? For example, in Sweden you are entitled to eldercare in your native language if you belong to a national minority, but in practice this is often a resource issue.

There are often specific circumstances for those who come out late in life, which we know is common among transgender people who now belong to the older generation. This is another issue about which more knowledge is needed.

There is a need for more knowledge about older LGBTI people’s specific health issues and diseases. There is also an issue that measures such as testing for HIV and other STIs rarely target older people. It is also important to take geographical differences into account. For instance, some people in smaller cities are worried that tests will not be kept confidential and that information that they have been tested will leak out.

More knowledge is needed about differences and similarities between circumstances and needs in nursing homes and when receiving at-home care.

Less is known about how LGBTI seniors are cared for in private care than in public care, and it is more difficult to gain insights. One suggestion from meeting participants is to use LGBTI inclusion as a benchmark in purchasing processes when private care companies are contracted by public care.

More systematic knowledge is needed about if, and if so how, municipalities in the Nordic region work with these issues. Sweden seems to be an exception here, with more knowledge available about what is being done at the municipal level, because this is being reported due to the fact that older LGBTI people are a prioritised area in the national LGBTI action plan. This is also a prioritised area in Norway’s national action plan.

When talking about health and social care staff, two tracks can be identified: Those studying basic education programmes in health or social care, and those who already work in health and social care and receive continuing professional development (CPD) courses. These key messages, which are derived from group discussions and meeting participants’ discussions, mirror that. Some focus on measures relating to education curricula and others focus on everyday practices and CPD in different ways.

It is important to acknowledge the specific circumstances and conditions experienced by healthcare professionals in eldercare. Eldercare is a sector that is marked by a lack of resources, poor working conditions, and little time for training. The importance of decent working conditions in eldercare cannot be stressed enough. Healthcare professionals need time to talk to the recipients, reflect, and implement proper care. This is often not the case today, with a lot of healthcare professionals finding themselves on very tight schedules with little or no time for either reflection or continued training. In order to improve healthcare for older LGBTI people, the general working conditions for healthcare professionals must be improved.

It is also important not to push the responsibility for implementing LGBTI knowledge onto individual healthcare workers, but that structural changes are made.

A lot of eldercare is performed by private actors, and there are very few opportunities to follow up these actors with questions about how they handle issues such as the risk of discrimination. More insights and follow-up measures are needed.

Meeting participants highlighted the need for a mainstreaming approach, whereby LGBTI knowledge is mainstreamed into everyday practices. Due to eldercare being a field of work with tight schedules and little time for specific courses and the like, this is especially important. We need practical knowledge for many different situations, and concrete examples of how concepts used in research can be bridged and understood in practice. For instance, how can a concept such as non-heteronormative be transformed into concrete actions? Such improved information and knowledge would help healthcare professionals to do a better job, give more accurate diagnoses, or offer better help and care.

Increased knowledge will also help policymakers to bring about change. Concrete knowledge can help in setting goals and following developments.

During the meeting, experts emphasised that it is important to find strategies to mainstream LGBTI knowledge, especially about older people, and make it compulsory in healthcare education. It can often be difficult to fit new content into existing programmes, and the answer is not primarily new specialised courses, but to mainstream the relevant material into existing content. In social work in Sweden, there are examples of how intimate partner violence has been mainstreamed in this way, with this aspect integrated into all parts of the programme and with strict regulations on following up the course objectives on intimate partner violence. There is now political interest in integrating other issues, such as knowledge about gang crime, in the same way. These examples illustrate that in a system like the Swedish one, but also in Norway, it is possible to work with the basic structures of the content of educational programmes – but it is a matter of political will. The Swedish system, with its national education plans, makes it possible to control content at the national level, but this is not the case in all the Nordic countries; for example, in Finland, all education plans, including objectives, are formulated at university level.

Norm-critical intersectional perspectives work well in both professional training and continuing education because they focus on how “othering” is created and maintained, but can also be broken. Especially in encounters with care workers who have experiences of racism, this becomes a way to reach out with a reflective, critical perspective on care practices. Teaching that focuses on heteronormativity, power, and other issues such as the concept of micro-aggressions is also successful, especially in social work. The participants also talked about including LGBTI issues in professional ethics contexts in education programmes, which is a form of mainstreaming.

One suggested measure raised by participants was the idea of ambassadors for change in nursing units, who receive training and can then train colleagues. The point was raised that it is important to also have non-queer people as ambassadors. One idea is that all municipalities should have one ambassador per nursing unit. It should be mentioned that this measure should be implemented in a way that does not place an extra burden on the individual ambassadors, and that the healthcare professionals’ working conditions need to be taken into account. This suggestion might seem to contradict others, which highlight the importance of not making the work for change too individually bound, yet this mirrors the complexity of the question and reflects the fact that some concrete measures are easier to implement immediately, whereas others require structural changes that will take longer to achieve.

Allocate funding for large research projects, as well as smaller grants for master’s and PhD students. It is also important to fund educational material about older LGBTI people’s living conditions at a Nordic level and in the Nordic languages. Nordic collaboration and funds for translations can also be an efficient way to more knowledge.