A caring community makes all the difference for LGBTQ+ patients and caregivers

LGBTQ+ caregivers report experiencing more social isolation and episodes of depression than other caregivers. Support groups can help strengthen coping skills and build community to reduce feelings of loneliness. (Getty image)

In difficult times, a caring community can make all the difference. But for people living with a serious illness, and their caregivers, life can feel very lonely. 

For individuals who identify as LGBTQ+, which includes me, it can be even lonelier. Even if you know where to reach out for support, you may find yourself worrying: Will I be discriminated against? Will I be refused the services I need? Will my partner or chosen family be included in decision making? 

Sadly, even in 2024, these are valid questions. I am a nurse educator at HopeHealth, the region’s largest and oldest provider of palliative and hospice care. Our patients and their loved ones have shared with us heartbreaking stories from their own lives. In our LGBTQ+ Grief Support Group, which is open to anyone in the region, we’ve heard about beloved partners and chosen family who were denied gender-affirming care; who were excluded from important health conversations; who were excluded from a loved one’s bedside in their final moments; all because of discrimination — both unintentional and intentional — from other family members and health care providers.

For all too many people, this represents too high a price to pay, even for services they may desperately need. Studies show that people who identify as LGBTQ+ are statistically less likely to reach out for health care and community services in the first place, which puts them at higher risk for poverty, food insecurity and health conditions that could otherwise have been prevented. LGBTQ+ caregivers report higher rates of social isolation and depression than other caregivers. Older LGBTQ+ adults are particularly vulnerable to all of the above — a population that, according to the Center for Health Care Strategies, will increase to an anticipated 5 million by 2030.

Clearly, our society has a huge and growing need for LGBTQ-affirming care. As health care providers and as communities, we must rise to meet it.

How? 

It starts with education. At HopeHealth, we have long turned to SAGE — the country’s oldest and largest LGBT advocacy and services organization — for its wonderful SAGECare cultural competency training. Through these and similar programs, we work on any blind spots we may have in our one-on-one interactions with patients and families. 

For instance, we shift our language to emphasize loved ones (to include a broader patient population) rather than just spouses and children (more likely to apply to heterosexual patients). We speak up for critical public policy changes on a broad scale, like protections for culturally affirming care. And we learn the system-level changes we can make within our own organizations to become a trusted ally of the LGBTQ+ community. This is more than just a rainbow sticker on the door. It’s about hiring staff who are part of the LGBTQ+ community. It’s about adjusting policies to be more inclusive, like ensuring that same-sex couples may live together in residential facilities. 

And it’s about creating spaces where LGBTQ+ patients, caregivers and loved ones can discover the profound comfort of community. 

To that end, in addition to our long-standing LGBTQ+ Grief Support Group, HopeHealth recently introduced the LGBTQ+ Caregiver Support Group, for caregivers who identify as LGBTQ+ or are caring for someone who does. It may seem like a small thing, but research shows that such dedicated support groups can have a profound impact. For example, thanks to support groups, studies show that caregivers have increased coping skills, reduced depressive symptoms, and often feel empowered to take better care of themselves, as well as their loved one. For many LGBTQ+ caregivers, such benefits are easier to tap into in a specifically LGBTQ+ gathering, where it may feel safer to open up about personal details.

Which brings me back to where I began: In difficult times, a caring community can make all the difference.

It is up to all of us to take proactive steps so we are ready, waiting and welcoming when LGBTQ+ patients and their loved ones need us most.

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