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Milestone Two: Improving Care Delivery for Sickle Cell Disease Patients

Precious Teasley

Southern New Hampshire University

HCM-700-11134-M01 Healthcare Admin Capstone

Professor Urmala

August 20, 2024

Improving Care Delivery for Sickle Cell Disease Patients

Statement of Need

Sickle cell disease is a substantial health issue and has a higher prevalence in people of colour, including African Americans, who are one of the most affected. Ironically, research in medical science has progressed over the decades, but Sickle cell disease patients still receive negligent treatment, primarily because many physicians are ignorant about it, and there are few facilities where such patients can access specialized treatments, and the patients suffer from stigmatization in the healthcare facilities. It is for these reasons that this proposal seeks to enhance physician education regarding the management of Sickle cell disease, improve access to Sickle cell disease specialized centres and institutes, and advocate for the ban of any forms of stigma against patients living with Sickle cell disease.

Evidence Supporting the Need

From the evidence, one can see that primary care physicians and healthcare providers do not receive proper education about Sickle cell disease: patients are diagnosed late, and the disease is treated insufficiently. For example, a study by Masese et al. (2019) describes challenges in care provisions; the majority of the emergency department personnel have acknowledged any form of deficiencies in their knowledge concerning Sickle cell disease. This lack of awareness creates not only a poor management of the disease but also a poor prognosis, as patients are key in higher pain crises, hospitalizations as well as early mortality.

However, access to such services is also a very important issue, particularly specialized care. To the study by Mburu and Odame (2019), the majority of Sickle cell disease patients do not receive care from comprehensive care centers that are required with comprehensive care centers. This lack of specialized services further complicates the situation for Sickle cell disease patients as there is poor co-ordinate care and unmet needs.

Stigma is also another factor that has a major influence on compromised care given to Sickle cell disease patients. This work by Pecker and Lanzkron (2021) maps notes that racism in the healthcare system is rife, whereby Sickle cell disease patients, especially the black ones, are seen as drug-seekers or are even denied satisfactory pain relief. This negative stereotype impacts not only the quality of care but even the effectiveness of care required by patients suffering from Sickle cell disease. As such, such patients tend to have poor trust in healthcare systems.

Understanding the Population’s Needs

The main population group at the receiving end is the Sickle cell disease patients, among Minority populations. Such patients need a more holistic approach to treatment where both the medical and the nonmedical aspects of the disease and its treatment are considered. This involves getting an opportunity to interact with professionals, institutions, and organizations in the area of health where there are competent personnel, accredited medical facilities, and progressive medical institutions which offer non-discriminative services for medical conditions related to or are caused by HIV/AIDS.

Management Theories

In order to meet these needs, the proposal for the intervention of the case will be underpinned by the theories of management. The contingency theory will help ensure that the proposed solutions are within the context of sickle cell disease patients and the environment within the health sector. This theory postulates that management should be consistent with the conditions of the particular organization or situation, which is quite essential in view of the multifaceted needs of Sickle cell disease patients (Idowu et al., 2020).

Furthermore, the tenets of transformational leadership theory will be used to influence and mobilize healthcare leaders to support the proposed change. This theory is centred around the leadership aspect, which influences change as a result of vision, enthusiasm, and guided objectives for enhancing organizational outcomes (Deng et al., 2021). By creating a culture of improvement and being empathetic, transformational leadership can contribute to developing healthcare systems where Sickle cell disease patients' needs are valued and discriminations are eliminated.

Conclusion

Due to these gaps that have been identified in awareness, access and stigma, this proposal will improve the quality of Sickle cell disease patient care by increasing their health status and their satisfaction with the services they receive. The use of management theories will ensure that the advocacy interventions that are being proposed will be proven to be appropriate and long-term in making a positive impact, helping the healthcare systems increase how they deal with Sickle cell disease.

References

Deng, C., Gulseren, D., Isola, C., Grocutt, K., & Turner, N. (2022). Transformational leadership effectiveness: An evidence-based primer. Human Resource Development International, 26(5), 627–641. https://doi.org/10.1080/13678868.2022.2135938

Idowu, S. O., Schmidpeter, R., Capaldi, N., Zu, L., Del Baldo, M., & Abreu, R. (Eds.). (2020).  Encyclopedia of Sustainable Management. Cham: Springer International Publishing. https://doi.org/10.1007/978-3-030-02006-4_1098-1

Masese, R. V., Bulgin, D., Douglas, C., Shah, N., & Tanabe, P. (2019). Barriers and facilitators to care for individuals with sickle cell disease in central North Carolina: the emergency department providers’ perspective.  PLoS One14(5), e0216414. https://doi.org/10.1371/journal.pone.0216414

Mburu, J., & Odame, I. (2019). Sickle cell disease: Reducing the global disease burden.  International journal of laboratory haematology41, 82-88. https://doi.org/10.1111/ijlh.13023

Pecker, L. H., & Lanzkron, S. (2021). Sickle cell disease.  Annals of Internal Medicine174(1), ITC1-ITC16. https://doi.org/10.7326/AITC202101190