FHS researchers seek to understand needs of LGBQ, young cancer patients

by Whitney Qualls, FHS PhD candidate

Cancer is the leading national cause of death, but it does not impact all Canadians in the same way.

Over the past two decades, health research efforts have focused on examining the disparities in cancer incidence, treatment and outcomes among certain social groups, including lesbian, gay, bisexual and queer (LGBQ*) populations. Certain types of cancers, such as anal and breast cancer, disproportionately impact LGBQ populations. Further, LGBQ cancer survivors are more likely to report difficulty in accessing care, have poor quality of life and experience discrimination more frequently compared to heterosexual survivors.

Another population with unique survivorship needs are Adolescents and Young Adults (AYA), individuals aged between 15 and 39. A cancer diagnosis during the early years of adolescence and young adulthood comes when people are finding their way in the world, better understanding their sexuality, completing education, launching careers, forming adult relationships and starting a family. LGBQ AYAs face the same challenges as their heterosexual peers, but also face stigma that may contribute to disparities in health status between this population and their heterosexual counterparts.

Despite these unique needs, data from adult LGBQ cancer patients and survivors are often extrapolated to describe the needs and experiences of AYA LGBQ patients and survivors. Research has indicated a need for LGBQ patients to disclose their sexual identity to their healthcare providers to build trust and receive appropriate care and referrals both in cancer care and general healthcare settings. Investigators have developed theoretical models to better understand the sexual identity disclosure process(“coming out”), for LGBQ adults but little is known about the coming out processes for AYA LGBQ patients in cancer care. What are the care preferences and priorities for this group? How do these patients approach sexual identity disclosure conversations with their cancer care teams? How do care teams facilitate these conversations?

My PhD research aims to better understand the experiences and preferences of AYA LGBQ individuals in cancer care, especially around sexual identity disclosure, through qualitative interviews with AYA LGBQ cancer survivors about their lived experiences. Cancer care professionals including oncologists, nurse practitioners, radiation technologists, social workers and allied health professionals will also be interviewed to gain insight on their priorities in caring for AYA LGBQ patients and how they facilitate these disclosure conversations. Findings from this study will provide a better understanding of the decision-making processes of both cancer care professionals and LGBQ AYA surrounding the facilitation of sexual identity disclosure conversations. This information can help determine where to focus future LGBQ AYA oncological health education initiatives and institutional LGBQ inclusivity initiatives.

Elsewhere in FHS, faculty and other students are building a large portfolio of projects researching issues affecting children and AYAs with a cancer diagnosis. FHS is home to the world-leading Childhood Cancer Adolescent and Young Adult Survivor (CAYACS) cohort study, which is following 50,000 young cancer survivors in British Columbia and contains 50 years of data. Building on the CAYACS cohort, FHS Professor Dr. Stuart Peacock and FHS Assistant Professor of Professional Practice Dr. Helen-McTaggart Cowan both received recent grants from the Leukemia and Lymphoma Society of Canada to study, respectively, educational outcomes of children who were diagnosed with cancer aged 0-15 years, and mental health outcomes for AYAs diagnosed with cancer. These investigations, along with my research, will help us better understand and develop stronger supports for younger cancer patients in BC and Canada.

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* Gender minorities are not included as a category because my research focuses on sexual minorities specifically. While gender minority folks may also identify as a sexual minority, they can face different types of discrimination, and legislative and medical experiences. These additional factors may interact with their sexual identity in ways that are different from LGBQ populations, and merits a separate investigation to better address the specific range of needs of gender minority folks.

February 4 is World Cancer Day where international communities work to raise awareness of cancer and to encourage its prevention, detection, and treatment.