Sickle Cell Association of Hampton Roads Virginia’s Mission
Improving Treatment, Quality of Care, and Quality of Life
- Research, education, awareness, and advocacy.
- Public policy, advocacy, and community engagement.
- Accelerating development of new therapies and improving quality of life.
Caregiver Support
Overview of Caregiving
- Caregivers are vital in managing sickle cell disease.
- Face challenges balancing caregiving with personal responsibilities.
- Often responsible for educating medical providers about the disease.
Impact on Caregivers
- Nearly 60% are primary caregivers, mostly immediate relatives.
- Around 10% care for other relatives or non-relatives.
- Over 10% care for adults aged 50 or older.
- Majority rely on medical professionals for information.
- Majority assist with activities of daily living.
- Many feel a sense of purpose in their role.
- Most monitor the severity of the patient’s condition.
- Three in five find it difficult to maintain their own health.
- Long-term caregivers are more likely to have fair or poor health.
- Half have difficulty maintaining friendships.
- Many feel emotionally stressed.
- Spend an average of 20 hours per week caregiving.
- 75% have experienced financial hardship due to caregiving.