Cancer survivors encouraged to help provide feedback on best practices for supporting LGBTQ+ cancer survivors and the people who care for them
The Barbara Ann Karmanos Cancer Institute is partnering with Wayne State University (WSU) School of Medicine, the University of Rochester, and the National Institutes of Health (NIH) to bring attention to the unique needs of cancer survivors and their caregivers in the LGBTQ+ community. The idea for this work came from LGBTQ+ stakeholder partners, who identified improving the well-being of cancer caregivers as a top priority for research and interventions. Now, the investigators are soliciting input from LGBTQ+ cancer survivors and caregivers from across the country. Investigators hope to recruit at least 48 people to participate in focus groups.
“Previous research has shown that LGBTQ+ individuals with cancer and their loved ones who act as informal caregivers experience higher levels of psychological distress and less access to appropriate psychosocial care compared with their heterosexual and cis-gendered counterparts," said Theresa Hastert, Ph.D., MPP, Population Studies and Disparities Research Program member at Karmanos, and associate professor in the WSU School of Medicine Department of Oncology. “As we focus on the importance of what has come from previous research and with the priorities of our LGBTQ+ stakeholder partners, we have identified an area of research we need to explore further.”
Dr. Hastert’s co-investigator is Charles Kamen, Ph.D., MPH, associate professor in the University of Rochester Medical Center Departments of Surgery and Psychiatry in New York. The two received funding from the National Cancer Institute to adapt an existing intervention (the FOCUS Program) to improve the quality of life among people with cancer and their caregivers to meet the needs of LGBTQ+ individuals. The LGBTQ+ stakeholder partners were part of the LGBTQ Cancer Action Council (CAC), facilitated by the Office of Cancer Health Equity and Community Engagement (OCHECE) at Karmanos. The LGBTQ CAC is a group of cancer survivors, caregivers and advocates. The CAC members were crucial during the preliminary phase of the study, leading to a published paper, Community-Driven Identification and Adaptions of a Cancer Caregiving Intervention for LGBTQIA Population, in Frontiers of Oncology in June 2022.
“In the first phase of this study, we are recruiting LGBTQ+ cancer survivors and caregivers to participate in focus groups to provide feedback on the existing FOCUS intervention and ways it could be adapted to better serve the LGBTQ+ community,” Dr. Hastert shared.
The information obtained through the focus groups will assist in adapting the FOCUS program to better address the needs of LGBTQ+ cancer survivors and caregivers. Investigators are working with a group of topic experts in LGBTQ health and cancer survivorship and interventions to develop an adapted version of the intervention—updating the content of the interventionist guide and the additional information and resources provided during the program. The adapted version will be pilot-tested among LGBTQ+ cancer survivors and caregivers using funding in the current grant to determine if the program is feasible and acceptable in the LGBTQ+ population. Future research will extend the study to measure the improvement of outcomes (e.g., quality of life) among LGBTQ+ cancer survivors and caregivers.
To participate, cancer survivors must be at least 18 years of age and have a friend or family caregiver who is willing to complete the focus group with them. There are no restrictions on when the cancer diagnosis was given and how long the survivor has had the disease or has been in remission. The cancer survivor or their caregiver must identify as LGBTQ+, and both must be able to participate in the focus group in English. These focus groups will be conducted in person at the Karmanos Cancer Institute in Detroit or online via Zoom, depending on the preferences of the participant group. The focus group sessions will last approximately 90 minutes. Each participant will receive a $50 gift card in appreciation for their time.
Potential participants may sign up for the study by visiting karmanos.org/focusstudy or learn more by contacting the research team at 313-578-4237 or [email protected].