Women with SCD face significant healthcare challenges: Study
Researchers call for provider education, training on antiracist practices
Women with sickle cell disease (SCD) experience significant challenges with healthcare while struggling with both the physical and social toll of the disease, a new study from the University of Pennsylvania reports.
Managing physical pain, facing emotional challenges, and feeling stigma from healthcare providers, especially when transitioning from pediatric to adult care, are among the main themes that were detected in interviews with female SCD patients, according to the researchers.
Although some female patients reportedly found strength in their experiences, the team noted that these results highlight the need for more compassionate and informed healthcare practices to better support women with SCD.
“Provider education and training on anti-racist practice and both recognizing and eliminating bias are essential to improving care of SCD patients,” the researchers wrote.
The study, “Experiences with healthcare navigation and bias among adult women with sickle cell disease: a qualitative study,” was published in the Quality of Life Research journal.
Researchers interview 20 women with SCD on living with disease
SCD is a hereditary blood disorder that causes severe pain episodes and progressive organ damage. While advancements in screening, prevention, and treatment have reduced mortality rates, living with sickle cell disease remains challenging.
Women with SCD are thought to represent a vulnerable subpopulation of patients, but there is limited existing research on their experiences living with the disease.
Now, to better understand how these women cope with SCD and navigate the healthcare system, a team of U.S. researchers conducted interviews with 20 female patients, ages 22 to 45. The women were interviewed between 2021 and 2023, and asked to describe their perception of the disease, transitions between pediatric and adult care, and any experiences with stigma and bias.
One patient said having SCD has left her reliant on the healthcare system.
“For every problem in my life, I have been instructed to take this or listen to that or this doctor, or there’s this medical treatment… Everything is outside of myself,” one participant said, reflecting feelings of powerlessness.
But while SCD symptoms impact daily life, some participants managed to find ways to cope. “It was hard, but I guess growing up with it, it just kind of becomes part of your life,” one patient shared.
That sense of acceptance helped some individuals find a new sense of normalcy, but the disease continued to affect relationships, employment, and mental health. “Who would want to hang out with someone who couldn’t keep up, who always had to stop to catch their breath,” one participant shared.
I feel like I lost so many years of my life because I was in this twilight zone of doctors and jumping everywhere trying to find the right doctor [for my SCD care].
The transition from pediatric to adult care also emerged as a source of difficulties. Many participants felt unprepared for how their disease would change with age.
“I didn’t understand sickle cell fully. And even my pediatric hematologists, they never really explained it to me,” one participant shared, adding, “I never understood what was going on inside my body.”
Finding the right adult care provider also was challenging. “I feel like I lost so many years of my life because I was in this twilight zone of doctors and jumping everywhere trying to find the right doctor,” one participant said.
Many patients faced negative stereotypes from healthcare providers
In addition to these challenges, many women reported feeling dismissed or judged by healthcare providers. Stereotypes about drug-seeking behavior were a frequent source of frustration.
“People with sickle cell disease are stigmatized as being drug addicts and they’re only coming in because they want … medical-grade medicine to get high,” one patient shared.
The patients’ testimonies also showed how their expertise about their own disease was constantly questioned.
“I’ve had doctors and nurses completely disregard my pain. … I’m looking for the care that I deserve,” a patient said, demonstrating that she felt unsupported and misunderstood by her doctors.
Pain management also was cited as a difficult topic to address with doctors. One patient recalled conversations about opioid use for an extended period: “It’s like a lot of doctors… are like, you have sickle cell, you’re going to be in pain, you might as well get comfortable with it now, you’re going to be on narcotics for the rest of your life.”
According to this woman, “that’s not the way it should be. And I feel like I was just dismissed.”
Racial and gender identity also played a role in how patients sought care, the study found. Some women prioritized finding same-race providers.
“’Finding a Black woman was the biggest factor’ in choosing a provider” for one participant, the researchers noted.
Another patient explained the difficulties of receiving care in an area where doctors lacked experience with SCD due to a small Black population. “There’s not a huge sickle cell demographic. So, me going there, they wanted to learn… but you’re hindering me,” this woman said.
Improving care for SCD patients in the identified areas requires more than better education for healthcare providers, according to the researchers.
“Providers should not only be educated about systemic biases, but also trained on ways in which to dismantle harmful stereotypes,” the researchers wrote.
More support during transitions of care and a greater understanding of the lived experiences of women with SCD also were highlighted as essential needs.
Despite the challenges with healthcare, some participants found strength through their illness. “I would pick sickle cell over anything. This makes me strong,” one participant shared.
