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Empowering Caregivers of Adults Sickle Cell Disease Patients (CASPs): Share Your Support Story
K
Katharine Head
Primary Investigator
Recruiting
18 years - 100 years
All
Phase
N/A
1 Location
Brief description of study
Why is this study being done?
The goal of this study is to explore the experiences of Black/African American caregivers of adults living with Sickle Cell Disease (SCD). By sharing your story, you will help researchers understand the challenges and support systems involved in caregiving, which will lead to improved care for families in the Sickle Cell Disease community.
Who can take part?
Black/African American caregivers (18 years of age or older) who are supporting an adult loved one with Sickle Cell Disease (SCD).
Detailed description of study
What will happen during the study?
- To participate, you will first need to fill out a short eligibility survey.
- If you are eligible and choose to participate, you will complete a one-time interview lasting 60–75 minutes.
- Interviews will be conducted online (via Zoom) or in person if you reside near Indianapolis, IN (scheduling is flexible and can be set at mutually agreed location that is convenient to you).
- During the interview, you will be asked about your caregiving experiences, the types of support you receive, and how cultural and relational factors influence your caregiving role. No travel is required for virtual interviews.
Incentive/compensation
- Participants will receive a $50 gift card as compensation for their time.
We reserve the right to dismiss you from the study and you will not be compensated for participation if you falsify your identify and/or information in order to meet eligibility criteria.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: all
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Age: 18 years - 100 years
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Gender: All
Inclusion Criteria:
• 18 years of age or older and identify as Black/African American.
• Provide substantial care to an adult (18 years and above) with Sickle Cell Disease (SCD).
• Are a parent/legal guardian, biological sibling, or spouse/romantic partner of the SCD patient.
• Reside in the United States.
• Fluent in English.
• Have at least six months of caregiving experience.
• 18 years of age or older and identify as Black/African American.
• Provide substantial care to an adult (18 years and above) with Sickle Cell Disease (SCD).
• Are a parent/legal guardian, biological sibling, or spouse/romantic partner of the SCD patient.
• Reside in the United States.
• Fluent in English.
• Have at least six months of caregiving experience.
Exclusion Criteria:
• Individuals below 18 years of age and do not identify as Black/African American.
• Individuals who are not directly involved in SCD caregiving activities.
• Are a parent/legal guardian, biological sibling, or spouse/romantic partner of the SCD patient.
• Not residing in the United States.
• Individuals below 18 years of age and do not identify as Black/African American.
• Individuals who are not directly involved in SCD caregiving activities.
• Are a parent/legal guardian, biological sibling, or spouse/romantic partner of the SCD patient.
• Not residing in the United States.
Updated on
06 Mar 2025.
Study ID: 25789
Pre-Screener
