Max Kleijberg

This project aims to create LGBTQ+ inclusive end-of-life (EoL) care using findings from the applicant’s Forte-funded postdoc research. Despite advances in LGBTQ+ rights, inequities persist in EoL-care for LGBTQ+ people, driven by factors such as limited intergenerational social support, minority stress, and a lack of LGBTQ+ competency among care staff. The concept of “queering the death system” refers to how LGBTQ+ people improve their own EoL experiences, for example by creating informal caring networks. EoL-care staff can contribute to queering the death system by implementing LGBTQ+ inclusive EoL-care practices, yet research shows that they require support to do so. This project responds to these societal needs by bringing together LGBTQ+ and EoL-care stakeholders to create partnerships, exchange knowledge, and implement LGBTQ+ inclusive EoL-care practices and education. “DöBra Rainbow Cafés” will serve as a platform for this work. These cafés were initially developed as part of the applicant’s research to create LGBTQ+ community support around EoL issues. In this impact project, cafés will be spaces in which LGBTQ+ and EoL-care stakeholders come together to develop LGBTQ+ inclusive EoL-care based on research in this field. Two café-formats will be developed: group-format cafés focus on sharing experiences and developing inclusive practices, while roundtable-format cafés concentrate on policy change. The cafés aim to create impact at three levels: personal/group (building partnerships, exchange knowledge, develop ideas for LGBTQ+ inclusive EoL-care), action-oriented (implementing LGBTQ+ EoL-care practices and education), and strategy-oriented (influencing policies). By centering LGBTQ+ voices and using a participatory approach that focuses on resilience and action, the project addresses persistent inequities in EoL-care and aims to create long-term impact towards LGBTQ+ inclusive EoL-care.

Older people are at increased risk for mental health issues and involuntary loneliness. Belonging to a sexual or gender minority is also found to increase these risks. However, there is a lack of knowledge about mental health, social isolation and involuntary loneliness among LGBT+ people (lesbian, gay, bisexual, transgender and other sexual and gender minority identities) in later life.The overall research aim of this project is to investigate mental health, social isolation, and involuntary loneliness among LGBT+ people 65 years or older in Sweden, using both quantitative and qualitative approaches. A second aim is to, in collaboration with the target group and community-based, social and health care stakeholders, identify ways to tailor initiatives to those older LGBT+ people who are found to be most at risk.The aims are addressed through four studies. Study 1 uses already collected data from a population-based survey study to analyze gender identity and sexual orientation disparities in mental wellbeing among older people in Sweden. Study 2 is a survey study directed to the 65+ LGBT+ population to investigate how structural and experiential factors (e.g., openness about LGBT+ identity and stigma-based stress) affect mental health, social isolation and involuntary loneliness in this group. Study 3 is a qualitative interview study with older LGBT+ people who reported loneliness and social isolation, to explore their experiences of relationships, belonging, and community, and facilitators and challenges in strengthening social support networks. Study 4 is a qualitative interview study with community-based, social and healthcare stakeholders to identify ways to tailor initiatives to those older LGBT+ people who are found to be most at risk. An advisory group with representatives from the target group, LGBT+ organizations, and care and policy stakeholders, will be involved throughout the research. This interdisciplinary project is theoretically informed by gerontology, psychology, healthcare science, gender and queer theory. Research results are intended to contribute empirically and theoretically to these fields. Results will be disseminated academically and in contexts where results can inform practice and policy with support from the advisory group. Furthermore, results are intended to form a basis for developing initiatives towards preventing mental health issues, isolation and involuntary loneliness among older LGBT+ people.