DUSON Assistant Professor works to combat Sickle Cell Disease Across the Globe

As a member of the International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) and consultant to St. Jude, Ibemere was recently invited by the Ministry of Health to travel to Brazil to provide a mini–Sickle Cell Disease (SCD) bootcamp to nurses representing every state in Brazil this past November. Ibemere provided an overview of SCD Epidemiology globally and in Brazil, SCD Pathophysiology, SCD patient stories, and the use of Incentive spirometers, which are used to maintain good pulmonary hygiene (in other words, encourage very deep breathing).

According to IX Brazilian Symposium on Sickle Cell Disease/gth ENAFAL, SCD is one of the most prevalent hereditary diseases in Brazil. The symptoms vary depending on the early diagnosis and start of treatment, age, care, and preventive measures. These events and clinical complications can directly impact the social and school life of the individual with the disease. Though sickle cell disease can be diagnosed in any group of people, disease prevalence is highest among those with African ancestry.

Ibemere said the SCD Nursing bootcamp is an exciting step forward in building provider capacity to deliver evidence-based sickle cell disease care and management in the U.S. and internationally. “The literature base which outlines provider capacity to delivery sickle cell disease care explains there is a gap in knowledge and strategies to implement the SCD guidelines, thus a great deal of discomfort reported by healthcare providers in caring for sickle cell warriors globally,” Ibemere said. This can often devolve into stigmatizing behaviors which are made worse in the context of racism in healthcare and the implicit biases which exist that suggest Black and Brown people can handle more pain than other groups (Hoffman et al., 2016).

“We have been so lucky to adapt our U.S. based program to Brazil this year to offer a mini-SCD bootcamp. This has meant our capacity building efforts have expanded to areas where SCD prevalence is higher, which creates even more impact on the quality-of-care sickle cell warriors are receiving,” Ibemere said.

Ibemere said she hopes that the nurses left the bootcamp with a sense of community and camaraderie. “Essentially, we want them to know they have a network they can lean on. We also hope the nurses left with new tools in their tool shed that they can call on and use in their clinical practice.” She continued, “I may be biased as I am the one who teaches this, however, my favorite is getting the nurses to join me in using an incentive spirometer so they can understand how difficult it really is to do,” Ibemere said, “My hope is that this lesson can instill some empathy in our participants and provide insight on what they are asking their patients to do when they simply say, ‘ok, do your incentive spirometer 10 times in an hour’, It’s not that simple.”

Ibemere will work with her team to eventually develop a manuscript to describe the bootcamp and publish pre and post data which describe changes in knowledge for this new cohort of international bootcamp participants.

She said this opportunity allows her to feel she is actively part of closing health equity gap. “Our work as researchers is a long game, often our work takes years to fund, collect, analyze, and publish. Publication does not always guarantee those who should have access to the data will have access to the information,” Ibemere said. “Opportunities to directly engage and impact patients, healthcare providers, and health systems builds morale, informs research, and offers the chance to more efficiently affect health inequity.” Additionally, Ibemere will be presenting her abstract which presents data from her DUSON Center for Nursing Research (CNR) Award pilot award at the 65th American Society of Hematology Conference. The CNR Pilot Funding Program encourages researchers to explore novel, current and innovative ideas that address DUSON Research Areas of Excellence (RAEs). The four RAEs are: data science, health innovation, population health and precision health. Ibemere’s call was specifically geared toward addressing health equity as part of the research lifecycle.

The aims of her own award were as follows:

• Aim 1: Assess clinician general knowledge, attitudes, and practice related to SCD management. We assessed clinician (e.g. nurses, physicians, community health workers) to understand their level of knowledge, attitudes and practices related to recommended SCD management recommendations.
• Aim 2: Evaluate clinical applicability of evidence-based algorithms for SCD management in Nigeria. We assessed barriers and facilitators to implementation of evidence-based recommendations for SCD in Nigeria.

Ibemere and her team have finished data collection for the two aims listed above. “We have collected complete survey data from 205 adult and pediatric nurses and adult and pediatric hematologists and general physicians. A total of 53 interviews with clinicians are being transcribed at this time for qualitative data analysis,” Ibemere said. “We anticipate at least 3 manuscripts will come from these data and have plans for other manuscripts as well. We are collaborating with our colleagues at the Center for Translation and Implementation Research, University of Nigeria to accomplish these goals.” She continued, “We are currently working on the start of qualitative data analysis which will truly highlight the barriers and facilitators to the expansion of SCD management across Nigeria. Many of which are workforce and resource capacity related. A social justice and equity issue across the board indeed,” Ibemere said. Ibemere moved to NC and started at DUSON as a postdoctoral fellow for Dr. Paula Tanabe (PI: Tanabe, COMPARE-VOE, 1UG/H3 -HL137856-01) in February 2020 – the beginning of the SARS-CoV-2 pandemic. She joined as a faculty member in July 2021.

She said her passion for combatting health equity issues in sickle cell disease and chronic disease in general comes from her firsthand experiences as a child of Nigerian immigrants. “I have lost family members to chronic disease due to access and capacity gaps in Nigeria. Learning that sickle cell disease prevalence was the highest in Nigeria only fueled my passion to close these gaps,” Ibemere said.