Being a caregiver to a loved one with cancer is a challenging but essential position for anyone who fills it. There is a robust network of resources available for many caregivers, including support groups, instructional guides and more. Unfortunately, for caregivers in the lesbian, gay, bisexual, transgender and queer (LGBTQ) community who may be supporting partners, friends or chosen family, resources are slim. This is concerning considering that one out of every three LGBTQ adults serves in an unpaid caregiving role. In contrast, only one out of every six adults in the general U.S. population is an unpaid caregiver, according to research compiled by the National LGBT Cancer Network.
The LGBTQ Cancer Action Council (CAC), organized by the Office of Cancer Health Equity and Community Engagement (OCHECE) at Karmanos Cancer Institute, identified the lack of resources for LGBTQ caregivers as a top priority for the group to address. The LGBTQ CAC is a group of community stakeholders that are LGBTQ-identified cancer survivors, cancer caregivers and advocates. This group works with OCHECE researchers to center their voices and experiences in future research projects.
The LGBTQ CAC has spent the last year identifying shared challenges amongst LGBTQ caregivers so they may design an intervention to address the needs of these critical support people. Their review unearthed a variety of issues. For example, they found that support materials tend to be heteronormative and focus on a male/female dyad. Additional troubling findings reflect those reported by the National LGBT Cancer Network, which states:
LGBT caregivers have experienced microaggressions such as rendering a partner’s role in care decisions as “illegitimate,” or hostile remarks and behaviors by medical staff, along with macro-level discrimination such as prohibitions against including same-sex partners on health insurance, designating visiting spaces as “family only,” or fining same-sex partners for parking in areas where family members can park for free.
In response, the LGBTQ CAC has outlined a plan to begin addressing the lack of resources available for LGBTQ caregivers. They started by examining existing interventions to identify sources that can be adapted to be more inclusive. The group has also applied for grant funding that will aid them in their work. When complete, they hope to share their work with cancer centers across the nation to ensure that LGBTQ caregivers have the resources they need to support their loved ones. Final offerings may include education in coping skills and symptom management, strategies for addressing homophobic encounters with medical staff, information for social workers and methods to connect with other LGBTQ caregivers.
“We are still early in the process of designing a new intervention, but we are excited about what’s to come,” said Forrest Hosea, research assistant, Office of Cancer Health Equity & Community Engagement and LGBTQ CAC facilitator. “There is a huge need to fill. LGBTQ CAC members are using their unique perspectives to make a difference in the lives of caregivers.”
For more information about Cancer Action Councils and the Office of Cancer Health Equity and Community Engagement, click here.