HFA Tackles Mental Health ‘Head-on’ With New Well-being Courses

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by Vanda Pinto, PhD |

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The Hemophilia Federation of America (HFA) is now offering mental health and well-being courses, through its Learning Central program, to support people with hemophilia, as well as their caregivers.

Topic areas include anxiety, suicide, trauma, pain management, depression, and grief. Offered resources in the program’s library can be accessed and explored at the user’s own pace, and be revisited at any time.

“It was time to address mental health head on,” the nonprofit said in a press release announcing its new courses.

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Focusing on Mental Health at This Year’s Hemophilia Federation Symposium

While the HFA has dealt with mental health-related issues before — using terms like “stress management” — its staffers determined in recent years that the organization wasn’t doing enough.

Plans to develop courses specifically on mental health first emerged in 2017 after the HFA team noticed that many patients — notably the men in HFA’s Blood Brotherhood program — and family members were struggling with anxiety and depression.

Some of the hemophilia patients had contracted HIV through contaminated blood clotting factor products used during the 1980s, while others were dealing with insurance company issues. Meanwhile, some women with the blood disease were struggling for an accurate diagnosis and treatment.

“Our community has been through collective trauma together,” said Lauren Black, HFA’s associate director. “Whether it was the HIV crisis or just being diagnosed, they felt no one was really listening to them.”

An urgent need to discuss mental health issues among those with hemophilia and their families was highlighted at a symposium that followed the suicides of some community members.

“Blood Brothers were talking and crying and saying, ‘we need help with mental health and there needs to be a conversation,’” said Lori Long, director of the Institute/HFA’s Learning Central.

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Being Open About Mental Health and Chronic Illness

Long and other Learning Central staff decided to gather information through personal phone calls and social media, and by speaking to members at the symposium.

This information was then used to tailor courses to better address the needs of the community. Topics and resources centered around mental health were developed based on years of listening to community members, the team said.

Course content material was reviewed and checked by medical professionals. Some of the mental health professionals who offered their expertise also are community members. Online courses also counted on the contribution of members of the hemophilia community, who guide participants through the materials.

Unlike other courses found on HFA’s Learning Central, participants are free to take lessons from the Mental Health and Wellbeing courses at their own pace.

“It’s OK to go through the courses slowly and to come back,” Black said. “You don’t have to finish all at once.”

Other topics associated with mental health, including pain management and lifestyle changes, also are discussed in the courses. These sections cover managing pain during an opioid crisis, strategies for coping with pain, and palliative care.

“Palliative care is not just for people who are dying,” Long said. “It helps many people with comfort and endocrinology for ways to make opioids more effective.”

Further down the line, courses may be added to touch on different areas affecting mental health, such as bipolar disorder, eating disorders, Alzheimer’s disease, and dementia. The organizers hope to include a more in-depth section on grief. A similar course may be developed based on the Latino culture with Spanish-speaking guides and stories.

Learning Central’s online learning modules for adults are available via computer, tablet, and smartphone. Information is provided in compact learning pieces and the design is story-based to engage the participant’s interest. More details on the courses that are currently available can be found here.