Family & Caregivers

Abstract

People of African descent and those identifying as Black and/or Latino experience a disproportionate burden of sickle cell disease (SCD), a chronic, serious blood condition. Caregivers of children with chronic medical conditions report worse mental health than others. Disease associated stressors can affect caregivers of children with SCD. We conducted a systematic review to summarize the prevalence of mental health symptoms in caregivers of children with SCD and if symptoms were associated with the child’s SCD. This review is reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. We searched PubMed, PsycINFO and Embase identifying 1,322 records of which 40 met criteria for inclusion in this review. Findings suggest caregivers experience mental health problems and poorer mental health was associated with worse child SCD-related outcomes and treatment adherence. Efforts should be made to routinely screen SCD caregiver mental health and to refer accordingly.

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If you have a classmate, friend, or family member who has sickle cell disease, you may wonder how you can help. Knowing a little about the condition will help you find ways to be supportive.

What Is Sickle Cell Disease?

Sickle cell disease is a health problem that makes red blood cells become C-shaped or curved instead of round. The curved cells can get stuck and block small blood vessels. Blood can't flow normally, which can lead to pain and organ damage. People with sickle cell disease need lifelong medical care.

Sickle cell disease gets passed down in families. This means that people who have it got it from genes they inherited from their parents.

by Mary Shaniqua | June 19, 2020

Whenever I meet new people and tell them I have sickle cell disease (and explain what it is), they often ask how they can help. June 19 is World Sickle Cell Awareness Day, so I thought it appropriate to discuss ways that you can help the sickle cell community, including friends who may have the disease.

Here’s how to help

Because many of the affects of sickle cell disease are internal, the sad reality is that there isn’t much you can do to prevent patients from experiencing them. However, that doesn’t mean you can’t help at all.

My first piece of advice to anyone trying to support a person with sickle cell disease is to be understanding.

SEP 1, 2022

New Brunswick, N.J., September 1, 2022 – People who have sickle cell disease (SCD), a genetic disorder that affects red blood cells, have reduced life expectancy and may face many challenges in their life. However, there are steps they can take to live the healthiest life possible despite this disease. Archana Sharma, DO, Pediatric Hematologist/Oncologist at Rutgers Cancer Institute of New Jersey, the state’s leading cancer center and only NCI-designated Comprehensive Cancer Center together with RWJBarnabas Health, shares more.

Sickle cell disease is an inherited disorder of the red blood cells. It involves a defect in the hemoglobin protein which is found inside of the red blood cells. Hemoglobin is responsible for bringing oxygen from the lungs to the rest of the body. Normal red blood cells are shaped like a doughnut. They’re round and flexible which allows them to travel freely through the blood vessels. In…