Fostering End-of-Life Conversations, Community and Care Among LGBT Older Adults
A cohesive resource wherein older LGBT persons and/or their care providers can find knowledge and support around end-of-life choices and decisions (and the issues therein) is provided via website. Engaging with such a site can assist in the formation of community, virtual and personal.
Findings: Predominant findings: (1) A focus, by all groups, on the difficulty both engaging in end of life discussions and identifying those with whom to have such discussions, (2) Lesbians and bisexual women were more likely to note the need for community support and the absence of government, (3) Gay and bisexual men were more likely to identify issues of trust and the legacy of HIV (“never expected to live this long”), (4) Transgender persons were more likely to note that “medical personnel still uncomfortable with transgender persons” and (5) Service provided echoed many of these issues, but felt that they did not know how to intervene and were “not doing a great job of engaging” LGBT persons in end of life preparations and care. Website findings: (1) In the first eight months post-launch, website video content was viewed over 1,450 times, (2) Gross traffic comprised 5,629 users and 1,105 “authentic” users (visits of 11-1, 801+ seconds, long enough to download a document or click a link to one of our resources) and (3) The discussion forum was not well used.
Impact of findings: This project will have an impact on participants in the focus groups as well as those who attended the town halls and visited the website. The more direct clinical practice implications come from service provider participants as well as the information we have shared with agencies and organizations that serve frail LGBT older adults and those at end-of-life. The website offers the most in this context, providing a cohesive resource wherein older LGBT persons and/or their care providers can find knowledge and support around end-of-life choices and decisions (and the issues therein). The awareness that such a site exists itself can combat feelings of isolation and aloneness; engaging with such a site can assist in the formation of community, virtual and personal.
Publications, presentations and webinars
About the Project
A growing body of research has found that lesbian, gay, bisexual and transgender (LGBT) persons are significantly less likely to have partners and children—the most likely providers of care to older adults—and are consequently more likely to seek and receive care from friends—a relationship type unprepared for such conversations, potentially rendering them less likely, more superficial and awkward.
This project explored (1) the ways in which older LGBT Canadians prepare for later life and end-of-life, seek and consider care, engage networks of support and (2) the role that internet-based technology can play in supporting these activities.
For more details on the project rationale and objectives, click here.
Brian de Vries, PhD -- Simon Fraser University
Gloria Gutman, PhD -- Simon Fraser University
Line Chamberland, PhD -- University of Québec at Montréal
Janet Fast, PhD -- University of Alberta
Jacqueline Gahagan, PhD -- Dalhousie University
Áine Humble, PhD -- Mount Saint Vincent University
Steven Mock, PhD -- University of Waterloo
Project Contacts: Brian de Vries -- firstname.lastname@example.org and Gloria Gutman -- email@example.com
Key words: end-of-life care; end-of-life conversations; older adults; LGBT; non-family; advance care directives; long-term care