La’Shardae Scott, an experienced social worker and the mother of two young sickle cell warriors, surveys the obstacles faced by people living with sickle cell disease, including frequent discrimination. She explains how social workers can use empowerment theory to help patients and families move forward

By La’Shardae Scott, candidate for a doctorate in social work, CEO and president of the Scott Center for Observation, Treatment and Transition

An irreversible transformation

I am the mother of three young kings: Eric (12), Emory (8), and Evan (6). I used to feel that my journey as a parent would be “normal”—although I am not exactly sure if there is a normal in parenting. In 2015 and 2016, my life underwent a transformation that will never be reversed.

When my husband and I learned that Emory and Evan had sickle cell disease, I was suddenly forced to deal with the unexpected. I had significant personal challenges caring for my two sickle cell warriors—I could not even work for the first two years of Emory’s life owing to his frequent hospitalisations. But the chronic nature of my son’s condition didn’t stop me from exhaustively researching the disease.

• Sickle cell disease is a group of inherited red blood cell disorders, in which the red blood cells become rigid and sticky and look like a C-shape or farm sickle, causing pain throughout the body.¹
• Sickle cell anaemia is usually the most severe form of the disease.²
• Sickle cell disease is particularly common in people with an African or Caribbean family background.³

When he was only four, Eric, my eldest, began to wonder why his younger brother had to spend so much time in the hospital. In response, my husband and I wrote a children’s book titled What Dr. Shurney Taught Me (available for free on Amazon Kindle) to explain what sickle cell disease is, why Emory has to take it easier than most kids, and why he refuses to let the disease define him, despite the extreme pain he often experiences.

My experiences as a mother have shown me how hard it can be for the sickle cell community to find competent medical professionals and to convey their needs. As the CEO and president of the non-profit organisation Scott Center for Observation, Treatment and Transition, I am deeply committed to highlighting the plight of people affected by sickle cell disease and helping them overcome their challenges.

Social workers are trained to help their clients feel better, make good things happen in their lives, help them fight against unfairness, and give them compassion.

The many challenges for patients and families

The first obstacle in sickle cell disease is the need for consistent therapy, yet I have witnessed patients’ difficulty transitioning from childhood treatment to adult treatment. When pain from sickle cell disease is untreated, that may lead to organ deterioration and negatively influence morbidity and mortality.⁴

The second obstacle to effective care is more education for clinicians in pain management. The American Society of Hematology has guidelines for treating sickle cell disease-related acute and chronic pain,⁵ but clinicians must do more to put them into practice, and nursing curriculums could benefit from more focus on this topic. As a social worker, I participate in nursing department meetings, where I share patient stories and ensure that staff are up to date. I also meet with medical resident students and introduce them to some of the issues in sickle cell disease.

The third obstacle in pain management is a slow response time. The American College of Emergency Physicians (ACEP) recommends sickle cell patients receive fluids as soon as they arrive at an emergency room.⁶ Then, the time it takes to provide the first dose of opiates will decrease, as will the level of pain experienced, the number of days spent in the hospital, and the total cost of the visit. It would be less stressful for sickle cell patients to go through the process if there was a specific space for individuals to be triaged and receive the appropriate fluids. 

Fourth, increased stress frequently makes the pain worse in this patient population.⁷ Ignoring pain is dehumanising, but patients may find it hard to explain how much they are hurting when they are in pain.

Patients would benefit a lot from having a friend, a patient navigator, or a community health worker who can act as a link between them, their families, and the medical staff taking care of them.

The final obstacle is the discrimination that sickle cell patients face in healthcare facilities. African Americans are disproportionately affected by the disease, and, unfortunately, I have been the voice for many who have been mistreated and misunderstood. Because doctors don’t always understand the illness, they may make negative assumptions about why their patients want painkillers. Hospitals should offer training to help their staff become more self-aware and less influenced by their unconscious biases—I dread what my children may face in the years to come.

Empowering patients

The goal of the empowerment theory is to give people and groups more personal, social and political power so they can live better lives.⁸ It has critical importance in healthcare, as social workers and activists must have a solid understanding of marginalised groups and how institutions, laws and practices hinder them at times such as transitioning from child to adult care.

The three pillars of empowerment theory⁹

1.) Self-efficacy: Individuals must start by believing that they have the power to alter their surroundings. You must empower the client at a young age and instil in them the importance of understanding their diagnosis.

2.) Critical awareness: People can clearly understand that their challenges are not random or entirely their fault when they know the social, economic and political realities that led them to where they are and that are keeping them there. This understanding also encourages groups to work out shared issues.

3.) Making tools: To heal and grow, you need to be aware of what’s going on and then do something about it. This includes counselling, case management, lobbying politicians, self-advocacy, building programmes, and other ways to get access to resources.

I often use empowerment theory in my social work with clients—and with my own two sickle cell warriors, too. Armed with this theory, I believe that the parent can carve out a successful transition for their child with sickle cell disease.

Several years ago, I was interviewing a 16-year-old girl about her health, education and employment, and I used empowerment theory for the first time. In the end, it proved to benefit her world view and her father’s—who seemed to think my questions were beyond her comprehension and often interrupted. As part of the model, I asked the client to share how her diagnosis had hindered her, and she described her parents’ infantilising behaviour. She beseeched God to protect her from it. This created an opportunity for the father to see how she needed to start properly engaging with the world. Sharing with him that I was the mother of sickle cell warriors myself was pivotal to getting that point across.

When I asked the girl about any positives from her diagnosis, she said: “I am conserving power within my faith; this sickle cell does not have me.” Those words will stay with me forever. We need to provide our kids with a stable environment and the means to stand up for what they believe in.

Moving forward – the key role of social workers

African Americans and Black communities, which are disproportionately affected by sickle cell disease, don’t like to talk about it because it has a bad reputation. However, social workers can bring about positive change in their communities by advocating for their clients’ health. They need advocacy skills and cultural knowledge to find ways to improve the community’s treatment—in a way that is fair and includes them. 

Based on my experience providing healthcare to people with sickle cell disease, there are some specific questions that must be addressed, particularly during the transition from paediatric to adult care services. Putting these things under the microscope is crucial to promoting equal access to care and to combating implicit racism within healthcare institutions. 

• Does race or ethnicity play a factor in access to adequate care?
• How can we educate staff and hospitals about sickle cell?
• How is pain management being addressed in adult patients (We know that many patients start opioids or narcotics as young as seven years old)?
• What is the most appropriate age to teach about transition care?

Social workers like myself can help to defeat the negative stereotypes associated with the sickle cell community and answer these questions by collaborating with sickle cell clinics and medical professionals while keeping the client’s priorities in mind.

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References

[1] CDC. What is Sickle Cell Disease? [Internet]. Centers for Disease Control and Prevention. 2022 [cited 2023 Jan 10]. Available from: https://www.cdc.gov/ncbddd/sicklecell/facts.html

[2] CDC. What is Sickle Cell Disease? [Internet]. Centers for Disease Control and Prevention. 2022 [cited 2023 Jan 10]. Available from: https://www.cdc.gov/ncbddd/sicklecell/facts.html

[3]  Sickle cell disease [Internet]. nhs.uk. 2017 [cited 2023 Jan 10]. Available from: https://www.nhs.uk/conditions/sickle-cell-disease/

[4]  Renedo A, Miles S, Chakravorty S, Leigh A, Telfer P, Warner JO, et al. Not being heard: barriers to high quality unplanned hospital care during young people’s transition to adult services – evidence from “this sickle cell life” research. BMC Health Services Research. 2019 Nov 21;19(1):876.

[5]  Brandow AM, Carroll CP, Creary S, Edwards-Elliott R, Glassberg J, Hurley RW, et al. American Society of Hematology 2020 guidelines for sickle cell disease: management of acute and chronic pain. Blood Adv. 2020 Jun 19;4(12):2656–701.

[6] Sickle Cell [Internet]. [cited 2023 Jan 10]. Available from: https://www.acep.org/patient-care/sickle-cell/

[7]  National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. https://doi.org/10.17226/25632.

[8]  Vainauskienė V, Vaitkienė R. Enablers of Patient Knowledge Empowerment for Self-Management of Chronic Disease: An Integrative Review. International Journal of Environmental Research and Public Health [Internet] 2021;18(5):2247. Available from: http://dx.doi.org/10.3390/ijerph18052247

[9] Viola, A., Porter, J., Shipman, J., Brooks, E., & Valrie, C. (2021). A scoping review of transition interventions for young adults with sickle cell disease. Pediatric blood & cancer, 68(9), e29135. https://doi.org/10.1002/pbc.29135 – three pillars

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