Breaking the Sickle Cycle: Advancing Sickle Cell Disease Research and Policy Change -through Social Work Perspectives

Sickle cell disease (SCD) is a lifelong, genetic blood disorder that affects millions of people worldwide, predominantly those of African descent. Despite advances in medical treatments, patients with SCD continue to face significant challenges that affect their quality of life and social outcomes. Social work researchers and scholars have a critical role to play in advancing SCD research and policy change, yet their involvement in this area has been limited. This workshop seeks to address this gap by providing training opportunities and hands-on instruction to social work researchers and scholars on SCD research and policy. The workshop will provide an overview of the current state of SCD research and policy, highlighting gaps and opportunities for social work involvement. The workshop will also provide training on the various aspects of SCD research, including study design, sampling, data collection, measurement, and analysis. Participants will learn about best practices for conducting social science research related to SCD and will have the opportunity to engage in hands-on activities to develop their skills in these areas. The workshop will share experiences and insights on the challenges and opportunities for social work involvement in SCD research and policy and will offer practical advice on how social work researchers and scholars can contribute to this field. The workshop will be divided into three parts. In the first part, participants will gain an understanding of SCD, its impact on individuals and communities, and the current state of SCD research and policy. In the second part, participants will learn about the various aspects of SCD research. In the third part, participants will engage in activities to develop their skills in these areas and will have the opportunity to network with other social work researchers and scholars interested in SCD research and policy. The workshop's objective is to enable the audience to gain skills and knowledge that are important to social work research. The importance of this workshop to social work practice, policy, and research is clear and meaningful due to the lack of current interest in the topic. By advancing SCD research and policy change through social work perspectives, we can help “break the sickle cycle� and improve the lives of thousands of individuals affected by this disease. SCD patients continue to face numerous social issues in the United States. These include limited access to quality healthcare, social stigma, and discrimination. SCD patients, who are predominantly African American, often live in underserved communities that lack access to specialty care and comprehensive treatment options. This has resulted in higher mortality rates and increased healthcare costs for this population. Social stigma and discrimination also remain prevalent, with many patients reporting experiences of stereotyping, bias, and marginalization in healthcare settings and society. SCD patients often face challenges in education, employment, and social relationships due to their condition. It is crucial for social work researchers and scholars to become more involved in SCD research and policy change to address these social issues and improve the lives of SCD patients.