Funded by the Greater Milwaukee Foundation
Alaafia is leading an innovative study initiative designed to deepen our understanding of the daily experiences, challenges, and healthcare needs of individuals living with Sickle Cell Disease (SCD) in Wisconsin. The project seeks to generate meaningful, community-driven data that can inform healthcare practices, improve support services, and enhance quality of life for people affected by SCD.
This study focuses on the relationship between lifestyle, pain management, medication use, healthcare experiences, and overall well-being. By centering the voices of individuals living with SCD, Alaafia aims to identify practical solutions that address the unique barriers and challenges faced by this community.
Research Approach
Community Surveys
The first phase of the project involves distributing comprehensive surveys to individuals living with Sickle Cell Disease.
The survey findings will provide valuable insights into the realities of living with SCD and help identify trends, unmet needs, and opportunities for intervention.
Community Discussion Groups
Following the survey phase, Alaafia will facilitate focus groups and community discussions where participants can share experiences, discuss findings, and provide additional perspectives. These conversations will help ensure that the research reflects the lived experiences of the SCD community and promotes community engagement throughout the process.
In-Depth Participant Interviews
Based on survey participation, selected individuals will take part in a seven-day observational and interview study. During this phase, participants will engage in detailed conversations with researchers about their daily routines, pain experiences, medication management practices, healthcare interactions, and coping strategies.
This component of the study will provide a deeper understanding of how SCD affects everyday life and how individuals navigate the physical, emotional, and social challenges associated with the disease.
Advanced Study Observation
In the final phase, a smaller group of participants will work closely with researchers to explore pain management practices, medication usage, lifestyle patterns, and quality-of-life factors in greater detail. This phase will help identify successful strategies, barriers to effective care, and opportunities for improving healthcare delivery and support services.
Project Goals
The primary goals of this research initiative are to:
- Improve understanding of the lived experiences of individuals with Sickle Cell Disease.
- Identify barriers to effective pain and medication management.
- Examine the impact of lifestyle factors on health outcomes and quality of life.
- Highlight gaps in healthcare services and support systems.
- Inform patient-centered healthcare practices and policies.
- Strengthen advocacy efforts for individuals living with SCD.
- Develop recommendations that improve health outcomes and overall well-being.