Project Highlight: Sickle Cell Disease Home Visit Guides
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Sickle cell expert and HLM team up to support caregivers with empowering health education materials
With World Sickle Cell Awareness Day and Juneteenth both falling on June 19 this year, what might seem to be a coincidence of the calendar in fact underscores a relevant intersection of health, history, equity, and hope.
That’s why we’re taking a moment to highlight our work with Catherine Hoyt, Ph.D, an occupational therapist and researcher at Washington University in St. Louis.
As principal investigator at the GROWTH Lab, Dr. Hoyt studies the potential of early intervention to lower the impact of health challenges that people living with conditions such as sickle cell disease (SCD) can face.
When screening or a diagnosis such as SCD identifies children who are at risk of delayed development in areas such as language, attention, or skills, that’s where early intervention comes in. Through approaches such as speech or physical therapy, early intervention can boost development and learning, and provide a foundation for success in school and beyond.
A team of support
With Dr. Hoyt and her team’s expertise and collaboration, HLM designed a set of health education materials for use by health educators during a series of monthly home visits with families who have a baby or toddler with SCD.
These materials focus on the importance of building a team of support in areas such as:
Clinical care
Occupational therapy
School or daycare
Family and other caregivers
This team approach is critical for SCD, which is an inherited, genetic condition that causes red blood cells to grow into a sickle or crescent-moon shape. These cells can clump together and block the flow of blood, causing a variety of symptoms, including pain that can worsen into a sickle cell crisis that requires hospitalization.
SCD affects more than 100,000 people in the U.S., where an estimated 9 out of 10 affected are non-Hispanic Black or African American. About 1 in 365 Black babies are born with SCD.
Home visits build health literacy around SCD
The series of no-cost home visits with families who have a child with SCD seek to educate and empower, supported by a set of health-literate materials designed around topics such as:
SCD’s causes, symptoms, and possible complications
Healthy eating and sleeping
Finding and choosing child care
Preventing pain episodes, and providing comfort when they happen
When to go to the ER, and what to bring if you go
The materials provide many opportunities for interactivity, such as self-reflection, noting what’s working (and what’s not), and ways to compare options.
Resources for health equity
During the writing and design process for these materials, Dr. Hoyt ensured that connecting families with resources would be front and center.
Resources such as the Missouri Department of Elementary and Secondary Education’s First Steps early intervention program and the St. Louis Sickle Cell Association offer ongoing support for caregivers and people living with SCD as they age into adulthood.
“Sickle cell disease is an often-misunderstood disease that impacts the entire family,” says Dr. Hoyt. “Through our collaborations, we are seeking to provide evidence to support families in accessing intervention programs when and where they want it.”
Making the connection
SCD in Black Americans carries with it an imprint from the past. It is thought that sickle cell trait (the genetic change that causes SCD) arose thousands of years ago, and it protects people who have it from malaria.
Malaria is no longer found in the U.S. However, sickle cell remains as both the cause of a serious health condition and as a reminder of humans’ capacity to adapt and endure, much as Juneteenth stands as both a solemn reminder of struggle and a joyous celebration of freedom.
So, celebrate with us the resilience of people living with SCD and their communities, as well as leaders like Dr. Hoyt who work hard to ensure that equity is built into care.