Transition of Sickle Cell Disease Patients: An Expansive Conceptualization Framework

Presentation Date: 6/9/2024 Presentation Start Time: 2:15:00 PM Background This conceptual paper aims to examine the theoretical frameworks of Ecological Theory, System Theory, and Empowerment Theory in the context of individuals affected by sickle cell disease, commonly referred to as “Sickle Cell Warriors.” The aim is to gain a deeper understanding of how these theories can enhance and reinforce the provision of support and empowerment for individuals affected by sickle cell disease, by conducting a thorough analysis of these theoretical frameworks. When evaluating the proposed theoretical framework, it is important to take a comprehensive approach that considers all aspects of transition and its therapeutic effects. The primary focus of this conceptual paper will be to highlight the importance of integrating ecological theory, system theory, and empowerment theory into the roles and duties of social workers in positions of leadership and administration. The intent of this integration is to aid individuals with sickle cell disease throughout their healthcare and daily life transitions. The proposed context requires a social worker to provide a comprehensive understanding of inclusion, which includes various topics such as psychosocial factors, family dynamics during transitional periods, case management, and leadership interventions. Keywords Sickle Cell Warriors, Transitioning, Ecological Theory, System Theory, Empowerment Theory, Psychosocial, Case Management, and Leadership Interventions Methods Theoretical Integration: Integrate Ecological Theory, System Theory, and Empowerment Theory to create a conceptual framework addressing transition barriers. Collaborative Multidisciplinary Approach Foster collaboration among patients, families, educators, social workers, hematologists, pulmonologists, and cardiologists. Ecological Aspect Inclusion Utilize the integrated theories to enhance understanding and awareness during the transition from pediatric to adult care. Psychoeducation Consistently reinforce psychoeducation for both patients and families to facilitate transition and improve treatment comprehension. Comprehensive Support Employ System Theory to advocate for comprehensive services and address gaps in healthcare and personal support. Patient-Centered Care Prioritize patient needs throughout the transition process, ensuring their needs are met effectively. Advocacy Empower social workers to advocate for systemic improvements in healthcare delivery and support services to better serve patients and families navigating new systems. Results Social workers are crucial in offering patients and families a practical transition perspective. Timely notification will enable social workers and physicians to promptly address patient anxieties and redirect negative emotions associated with the procedure. Patients frequently experience significant anxiety when meeting a new physician. Physicians can create a transition program by using the resources available at their institution. To implement this integrated framework, a transition clinic must be established where adult and pediatric social workers, physicians, and care coordination teams work together to provide patient care. Conclusions The transition from pediatric to adult care poses a nationwide challenge for all chronic diseases. Patients with sickle cell anemia face additional challenges during transition, resulting in heightened reliance on acute medical care facilities and an elevated mortality rate due to disease complications. Although a theoretical framework consisting of ecological, systemic, and empowerment theories has suggested that enhancing health education during the transition of care could decrease morbidity associated with this disease, the existing literature on barriers to the transition of care from the perspective of stakeholders is limited and does not specifically focus on sickle cell anemia. This researcher puts forth three suggestions for future research in transition education: 1. The absence of adult healthcare professionals with specialized knowledge and a willingness to provide care for young adults with sickle cell anemia poses a systematic obstacle to establishing trust between doctors and patients. Transition research should include the development of strategies aimed at encouraging more doctors to specialize in hematology, with the goal of enhancing provider expertise and fostering a greater commitment to caring for patients in this field. 2. Following the identification and implementation of transition trainings for individuals, patients, and families, utilizing social workers, support groups, and community-based organizations, it is crucial to conduct an evaluation of health outcomes linked to different transition programs. This evaluation aims to ascertain the potential impact of these programs on patients' morbidity, mortality, costs, and quality of life. 3. There is a requirement for comprehensive centers dedicated to sickle cell disease that offer education from infancy to adulthood regarding diagnosis and assistance in navigating the condition with the aid of social workers and care coordinators throughout the entirety of one’s lifespan.