Effect of Health Educational Intervention on early detection of Sickle Cell Disease among Adolescent population in tribal areas of East Singhbhum district , Jharkhand

Title: Effect of Health Educational Intervention on Early Detection of Sickle Cell Disease among Adolescents in Tribal Areas of East Singhbhum District, Jharkhand

Introduction: Sickle cell disease (SCD) is a genetic blood disorder affecting millions globally, particularly individuals from Africa, the Mediterranean, and South Asia. India carries one of the highest burdens of SCD, and tribal population is notably affected. This study focuses on raising awareness and early detection of SCD among adolescents in government schools in East Singhbhum. SCD results from a genetic mutation that leads to abnormal hemoglobin (HbS), causing red blood cells to deform and impair circulation, leading to pain, anemia, and organ damage. Tribal populations in India, particularly in Jharkhand, are at high risk for SCD. As per Ministry of Tribal Affairs data, 1 in 86 births in tribal population in affected with Sickle Cell Disease. Although awareness and screening efforts have been initiated, gaps in knowledge and healthcare access persist, especially in rural and underserved communities.

Objectives:

1. Create awareness among adolescents in Government Schools towards sickle cell disease.

2. Conduct Participants Screening and early detection   for anemia and sickle cell disease, followed by counselling and referral among adolescents of the Government School.

3. Evaluate the perceptions of all stakeholders regarding the National Sickle Cell Anemia Elimination Mission,2023(NSCAEM).

4. To conduct a scoping review and map the existing literature on sickle cell disease among adolescents.

Methodology: The study employs a Sequential Explanatory Mixed-Methods Design. The quantitative phase involves administering questionnaires to assess knowledge and attitudes before and after health education interventions.  This questionnaire will be a close ended structured questionnaire developed by us .A follow-up will be conducted after three months to evaluate knowledge retention. Adolescents will also be screened for anemia through hemoglobin assessments and SCD through solubility tests.The qualitative phase involves in-depth interviews with stakeholders, including healthcare providers, ASHA workers,Principals, Teachers, patients, and caregivers, to understand healthcare barriers and perceptions related to SCD management and the NSCAEM,2023.

Significance of the Proposed Research Study

1.     Early Detection and Treatment: This study aims to mitigate the effects of the disease and improve health outcomes by detecting cases at an early stage.

2.     Increased Awareness and Education: Targeted educational interventions will help raise awareness, promote early detection, and empower adolescents to make informed decisions, particularly regarding carrier screening and genetic counselling.

3.     Addressing Socio-Demographic Inequalities: The study will compare socio-demographic factors between Scheduled Tribe (ST) and Non-Scheduled Tribe (Non-ST) adolescents, aiming to uncover specific needs and disparities with equitable healthcare solutions and interventions tailored to the unique challenges of each group.

4.     Evaluating Program Effectiveness: By assessing the perceptions of key stakeholders on the National Sickle Cell Anemia Elimination Mission,2023 (NSCAEM), the research will provide valuable insights into its implementation.

5.     Informing Policy and Practice: Using a mixed-methods approach, the study will generate comprehensive data on knowledge, attitudes, and barriers surrounding SCD. These findings will guide policy decisions, improve resource allocation, and enhance public health interventions for better management of the disease.

6.     Improving Access to Healthcare: The research will identify obstacles hindering access to healthcare services, enabling the development of strategies to address these barriers. Expected Immediate Outcomes:

1. Establishment of baseline knowledge on SCD among adolescents.
2. Enhanced awareness of SCD in the adolescent population.
3. Early detection of SCD and anemia among adolescents.
4. Identification of specific healthcare needs and disparities between tribal and non-tribal adolescents.
5. Creation of targeted Information, Education, and Communication (IEC) materials for health education.
6. Insights into the effectiveness and areas for improvement in the NSCAEM.
7. A deeper understanding of non-program-related barriers to healthcare access.
8. Generation of a representative data sample on adolescents, leading to publications and intellectual property (IEC material).

Future Scope:

1. Reduction in the prevalence of SCD through personalized counselling based on screening results.
2. Integration of SCD awareness sessions into the school curriculum in Jharkhand.
3. Evidence-based recommendations to policymakers to enhance the effectiveness of current interventions and increase support for affected individuals.
4. Development of strategic interventions based on the specific needs and disparities identified between tribal and non-tribal populations.