LGBTQ+ is an abbreviation and umbrella term for people who are part of minorities in relation to sexuality and gender identity. There are different versions of the abbreviation. The one we use stands for lesbian, gay, bisexual, transgender, queer people, and other minority identities.
Max Kleijberg leads this research project.
Marion Englaborn works in the project as research assistant.
Background
Dying, death, and loss concern us all. But as LGBTQ+ people, we may have different experiences, questions, thoughts, hopes and fears regarding the end-of-life. For example, older LGBTQ+ people in Sweden have lived through times when their identities were criminalized (homosexuality was decriminalized in 1944) and considered a disease (homosexuality was removed as a mental illness in 1979, today transgender people need to be diagnosed with “gender dysphoria” to gain access to gender-affirming care). Although LGBTQ+ people in Sweden have gained legal rights over the years, certain inequalities remain.
Research has shown that LGBTQ+ people have poorer mental and physical health compared to the general population. For example, involuntary loneliness and lack of social support are more common among older LGBTQ+ people. LGBTQ+ people also often deal with stigma in everyday life and sometimes face or fear discrimination when they interact with healthcare, including in palliative and end-of-life care. In addition, there are societal developments that question the identities of LGBTQ+ people and aim to limit their rights.
The aim of this research project is to develop supportive LGBTQ+ spaces for engagement with end-of-life issues and investigate LGBTQ+ people’s perspectives on dying, death, loss, and care at the end-of-life. This knowledge can contribute to improve the situation for LGBTQ+ people who deal with severe illness, dying, death, and loss.
DöBra Rainbow Cafes
In the framework of this project, so-called “DöBra rainbow cafes” are organized. These are organized by and for LGBTQ+ people who want to get involved in topics related to dying, death, loss, and end-of-life care. The cafes are meeting places where conversations about life, dying, death, and loss are facilitated by sharing food, conversation, artistic activities, community, and humanity. During the café, we use tools from the DöBra Toolbox.
This project applies a qualitative action research approach that integrates research and development in collaboration with stakeholders. In this project, this means that the researchers collaborate with various LGBTQ+ organizations and community leaders to organize the DöBra rainbow cafes. No conversations are documented during the cafes, but participants are invited to participate in research interviews afterwards. These interviews are about the participants’ experience of the DöBra rainbow café and about their perspective on dying, death, loss, and care at the end-of-life.
DöBra Rainbow Cafes Thus Far
November 2022: DöBra rainbow café in Stockholm in collaboration with RFSL Stockholm together with project ”Glittra med gråa hår” and with educators and death doulas Zafira Vrba Woodski & Tomas Woodski. This was an intergenerational café to create a sense of LGBTQ+ community across generations.
April 2023: DöBra Rainbow Café in Göteborg in collaboration with Marion Englaborn, RFSL Göteborg and Regnbågshuset in Göteborg. This was an intergenerational café.
October 2023: DöBra Senior Rainbow Café in Göteborg, in collaboration with Marion Englaborn, HBT seniorer and Regnbågshuset in Göteborg. This was a café focusing on seniors.
October 2023: DöBra Transcafé in Göteborg, in collaboration with Marion Englaborgn, Transammans Väst, FPES and Regnbågshuset in Göteborg.
October 2023: DöBra Transcafé in Stockholm, in collaboration with RFSL Stockholm together with project ”Glittra med gråa hår” and with educator and death doula Zafira Vrba Woodski
December 2023: DöBra Rainbow Café in Stockholm, in collaboration with Golden Ladies (a group for lesiban and bisexual women 35+), together with project ”Glittra med gråa hår” and with artist Sam Hultin.
This project has been presented here:
Aging Research Centre, Karolinska Institutet, February 2024
Death and Sexuality symposium, by the Social Aspects of Death, Dying and Bereavement Study Group (UK), international hybrid event, December 2023
Summit 2023 (a conference about 2SLGBTQIA+ health), Vancouver (Canada), November 2023
University of Victoria (Canada), November 2023
National conference in palliative care, Malmö (Sweden), October 2023
Stockholm Pride, Stockholm, August 2023
West Pride, Göteborg, June 2023
EAPC 2023 18th World Congress, (European Association for Palliative Care), Rotterdam (Netherlands), June 2023
Summit 2022 (a conference about 2SLGBTQIA+ health), Vancouver (Canada), October 2022
Resources
LGBTQ+ inclusive palliative and end-of-life care – reccomendations for healthcare staff and organizations. Developed by the EAPC Task Force on Palliative Care for LGBT+ people. Download here.
The research project is financed by FORTE