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Simon Fraser University - http://www.sfu.ca

The Fostering End-of-Life Conversations, Community Care Among LGBT Older Adults - Town Hall Meeting

by Patrick Aubert (MA Student, SFU Gerontology)

February/March 2015 - Fostering end-of-life conversations, community and care among LGBT older adults is a one-year study, funded by TVN (Technology Evaluation in the Elderly Network). Drs. Gloria Gutman (Professor/Director Emerita SFU Gerontology Dept. & Gerontology Research Centre) and Brian de Vries (Adjunct Professor, SFU Gerontology; Professor, (former Director) Gerontology Program, San Francisco State University) are principal investigators in a research project spread over five sights: Vancouver, Edmonton, Toronto, Montreal, and Halifax. They are seeking to explore two important issues: the first looks at the ways in which older lesbian, gay, bisexual and transgender (LGBT) Canadians prepare for later life and end-of-life, seek and consider care, and engage networks of support; and the second examines the role that internet-based technology might play in supporting these activities.

LGBT older adults have been described as an “invisible” population (Brotman, Ryan, & Cormier, 2003; de Vries & Blando, 2004) This invisibility has multiple causes often rooted in stigma and neglect (National Senior Citizen’s Law Center, 2011) and results in situations in which older LGBT adults find themselves back “in the closet”.

Recent research exploring the lives of LGBT older adults has revealed demographic and health conditions rooted in stigma and exacerbated by heteronormativity (de Vries, 2013). For example, relative to heterosexual men and women of comparable ages, LGBT older adults are up to three times more likely to live alone, and are up to one-third less likely to be partnered (Adelman et al., 2006; MetLife, 2010; Wallace et al., 2011). LGBT older adults are about five times less likely to have children (Statistics Canada, 2011) or to receive support from the children that they do have (Fredriksen- Goldsen et al., 2013). As a result, LGBT older adults report high rates of loneliness and isolation (Kuyper & Fokkema, 2010).

Research reveals a heteronormative pattern of support seeking (e.g., Cantor & Mayor, 1978) wherein care is both expected and first sought from spouses and immediate family members, followed by resorting to formal services. Substantial research notes the lack of LGBT awareness and acceptance on the part of many health and social agencies providing services to older adults (Sussman et al., 2012). Older LGBT adults often approach these service providers with fear and mistrust (National Senior Citizens Law Center, 2011), and delay seeking needed formal care (MetLife, 2010). These issues exacerbate and coalesce around the issue of planning for end-of-life care, and often leave many LGBT older adults woefully unprepared.

Conversations about end-of-life care are rare, and when they do occur, are often family-centred. LGBT older adults, less likely to have supportive kin, are less likely to have these conversations. The study has three broad goals: to understand and describe the issues faced by LGBT older adults in discussing and planning for end-of-life care; to share this understanding with the larger community; and to create a pilot web-based platform that will provide a supportive environment to offer relevant information, thereby empowering and improving the well-being of this historically disenfranchised group. The first two goals were achieved by conducting focus groups and community town hall meetings. The final goal encompasses developing a Resource Inventory to be included in the on-line platform.

The Vancouver site hosted four focus groups in September and October of 2014: one each for lesbian and bisexual women, gay and bisexual men, transgender adults, and community service providers. The community response to the request for participants was overwhelming. All of the groups were well attended, and participants eagerly shared their stories and experiences. While conversations around end-of-life planning may be difficult to initiate, it immediately became apparent that, given the opportunity and a safe space, focus group participants wanted to talk. The team performed a preliminary analysis of the data for presentation at the town hall meeting.

The Vancouver town hall meeting occurred on the evening of January 28, 2015, at the Harbour Centre Campus of Simon Fraser University and the audience filled the room beyond capacity. Dr. de Vries and I presented the preliminary findings from the Vancouver focus groups.

Three focus group participants, including Mr. Bradford McIntyre, spoke about their personal experiences in making plans for end-of-life care. Research assistant Robert Beringer (MA, SFU Gerontology) another member of the team, presented the Resource Inventory. Finally, several service providers, including a lawyer whose speciality is end-of-life documentation, spoke to the audience. The town hall ended on a high note once again demonstrating that people have a desire to talk about these issues and will readily do so when presented the opportunity.

Slides from the town hall and a video of the presentations will be available shortly. We expect to launch the on-line resource, including the Resource Inventory, in the very near future.

REFERENCES

Adelman, M., Gurevitch, J., de Vries, B., & Blando, J. (2006). Openhouse: Community building and research in the LGBT aging population. In D. Kimmel, T. Rose & S. David (Eds.) Lesbian, gay, bisexual, and transgender aging: Research and clinical perspectives (pp. 247-264). New York: Columbia University Press.

Cantor, M. H., & Mayer, M. (1978). Factors in differential utilization of services by urban elderly. Journal of Gerontological Social Work, 1(1),47-61.
Brotman, S., Ryan, B., & Cormier, R. (2003). The health and social service needs of gay and lesbian elders and their families in Canada.
The Gerontologist, 43, 192-202. de Vries, B. (2013). LG(BT) persons in the second half of life: The intersectional influences of stigma and cohort. LGBT Health 1(1), 16-21. de Vries, B., & Blando, J. (2004). The study of gay and lesbian lives: Lessons for social gerontology. In G. Herdt & B. de Vries (Eds.), Gay and lesbian aging: Research and future directions (pp. 3-28). New York: Springer.
Fredriksen-Goldsen, K., Kim, H.-J., Hoy-Ellis, C., Goldsen, J., Jensen, D., Adelman, M., Costa, M., & de Vries, B. (2013). Addressing the needs of LGBT older adults in San Francisco: Recommendations for the future. San Francisco, CA: Department of Public Health.
Kuyper, L., & Fokkema, T. (2010). Loneliness among older lesbian, gay, and bisexual adults: The role of minority stress. Archives of Sexual Behavior, 39(5), 1171-1180.
MetLife Mature Market Institute. (2010). Still out, still aging. Westport, CT:
MetLife Mature Market Institute.
National Senior Citizens Law Center (2011). LGBT older adults in long- term care facilities: Stories from the field.
Statistics Canada. (2011). Gay pride by the numbers. Ottawa, ON: Statistics Canada.
Sussman, T., Churchhill, M., Brotman, S., Chamberlain L., et al. (2012). Identifying barriers, developing solutions: Addressing the health and social needs of gay, lesbian, bisexual and transgender older adults who live in long-term care homes. Montreal, PQ.
Wallace, S.P., Cochran, S.D., Durazo, E.M., & Ford, C.L.(2011). The Health of Aging Lesbian, Gay and Bisexual Adults in California. Los Angeles, CA: UCLA Center for Health Policy Research.

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Source: GRCNv34n1_SHUPv24n1_WEB.pdf


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