Healthy
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The 2021 study, “Navigating Time and Space: Experiences of Aging with Hemophilia,†winner of the 2019 NHF Innovative Investigator Research Award, explores psychosocial challenges that contribute to developing comprehensive approaches for care and support as people with bleeding disorders age.
The study involved eight caregivers and 27 people over the age of 50 with a bleeding disorder. All of the participants were residents of California. Seventy-seven percent were ages 54-68; 23 percent were age 69 or older; 80 percent were male; 52 percent had severe hemophilia; 76 percent were white; and 60 percent were HIV negative.
One of the study’s key findings was that 88 percent of participants reported that their unexpected longevity has affected them in profound ways.
Researcher Sara Schwartz, PhD, MSW, clinical associate professor at the University of Southern California, said this included complex, lifetime emotions such as depression/post-traumatic stress disorder, stigma and shame, shifting time horizons, pain, trauma, fear, silence and isolation, and helplessness.
One of the main messages is, “We can’t wait until we’re old to think about mental health,†said researcher Tam Perry, PhD, MSSW, associate professor, Wayne State University School of Social Work. “While we’re excited about medical advancements, we can’t forget about all of the mental health challenges that go along with longevity.â€
Mosi Williams, PsyD, a social worker at the University of California San Francisco HTC and a member of the bleeding disorders community, said there are special stigmas associated with mental health and hemophilia.
For instance, he said, many people with bleeding disorders avoid hospitals unless they have to go for physical treatment, meaning they’re not going to go for mental treatments like therapy.
“People would say: ‘Mind over matter—I’m going to power through whatever is going on mentally,’†Williams said. “You can’t power through bleeds, but with mental health it’s considered to be that way.â€
Williams said there’s also a stigma for men getting help for mental health needs. That’s one reason why marketing is important, he said. Rather than having a discussion on a specific mental health topic, it can be framed as having a conversation or a check-in. Peer support groups and chats also allow people to share freely without feeling stigmatized.
Cognitive behavioral therapy can be a springboard to other mental health therapies, Williams said. For instance, positive psychology interventions featuring annual or six-month check-ins focus on staying well rather than getting treatment when something is wrong.
The research team’s future work will focus on how social factors such as age, gender, race and undocumented legal status is crucial to understanding how to serve the bleeding disorders population in an equitable way, improving medical treatment and contributing to policy revisions for accessible community resources. â–
