# Equipping Persons with Sickle Cell Disease, Transforming Care: A Protocol Paper on Feasibility and Acceptability of Self-Management Package in the Tribal Communities of Southern India

## TL;DR

This study aims to create a self-management package for sickle cell disease in tribal communities of southern India to improve health outcomes and quality of life.

## Contribution

The study introduces a culturally tailored self-management package for sickle cell disease in underserved tribal populations.

## Key findings

- A two-phase study will develop and assess a self-management package for tribal persons with sickle cell disease.
- Acceptability and feasibility will be measured using AIM and FIM tools with regular follow-ups.

## Abstract

Sickle cell disease affects tribal communities unequally. Self-management empowers the patient to take corrective actions, improve decision-making, and deepen understanding of the disease. Considering the unique challenges of the tribal community, implementing self-management complementary to the prescribed clinical management for sickle cell disease care can lead to greater autonomy, improved health outcomes, and, ultimately, quality of life. Hence, this study aims to develop a feasible and acceptable self-management package for tribal persons living with Sickle cell disease and caregivers residing in the Mysuru and Chamarajanagar districts of Karnataka.

The study will be conducted in two phases. In the first phase, a self-management package will be developed with insights from health providers working with Persons living with sickle cell disease, non-government organisations, Subject experts and persons with sickle cell disease and caregiver. This package will be implemented in the second phase for persons living with sickle cell disease. Participants will undergo capacity-building training and receive regular follow-up for 12 months through monthly telephonic calls and a few home visits. Assessment will be done with Acceptability Intervention Measurement (AIM) and Feasibility Intervention Measurement (FIM) at regular intervals. Suggestions and feedback will be added to make the package more comprehensive. Thus, the expected outcome is an acceptable and feasible self-management package.

This proposed study is an important step towards addressing a critical gap in sickle cell disease management in tribal populations in India. The anticipated outcome of this research is to enhance self-management practices in individuals with sickle cell disease.

A genetic condition known as Sickle Cell Disease (SCD) is a genetic condition that can lead to complications such as intense pain, fatigue, and sometimes death. In India, disease prevalence is notably high, ranking second to Sub-Saharan Africa, and it is particularly high among the tribal population. This lifelong condition often results in multiple hospitalisations, leads to out-of-pocket expenditures, affects work capacity, and ultimately diminishes quality of life. The ‘
National Sickle Cell Anaemia Elimination Mission’ initiated services focusing on screening for SCD and care to address these challenges.

However, improving individuals' ability to effectively use these services and make informed health decisions is equally important. Research indicates that self-management can be an effective tool in this regard. This approach can empower individuals and their caregivers to manage their condition more effectively and make informed decisions. Building self-management capacity among persons with SCD can ensure better utilisation and engagement by these individuals and their caregivers.

This proposed study aims to design a self-management package for SCD in the tribal population. This package does not intend to interfere with prescribed medical treatment and advice. Furthermore, the proposed study also intends to assess its acceptability and feasibility.

According to the objective, the study will be conducted in two phases. In the first phase, we will design a self-management package by finalising the content, delivery process, and strategies for adhering to those practices. The second phase will assess the acceptability and feasibility of the designed self-management package by providing the necessary training for using the self-management package to all persons living with SCD in the given study setting. Proper measurement tools will be employed to measure acceptability and feasibility, with regular follow-up planned to enhance engagement. Thus, the outcome will be an acceptable and feasible self-management package.