Stigma of Sickle Cell Disease: A Systematic Review.
Dominique Bulgin, Paula Tanabe, Coretta Jenerette
PMID 29652215WHAT IT FOUND
People with sickle cell disease reported stigma: pain discredited as drug seeking, delayed emergency care, and poor provider trust.
These experiences were associated with worse pain, mental health, and delayed care seeking.
Key findings
01Twenty-seven peer-reviewed studies of adolescents and adults with sickle cell disease were included, and the review identified four domains of stigma impact.
02People with sickle cell disease waited 25% longer than the general population and 50% longer than people with long bone fractures in emergency departments, after considering race and triage priority.
0388% of young adults with sickle cell disease waited until pain was an average of 8.7 on a scale of 1 to 10 before seeking care, and anticipated stigma influenced that decision.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Most included studies are descriptive and cross-sectional, so they show associations, not that stigma causes these outcomes. The review was done by a single reviewer, so study selection and abstraction could have errors. Only English studies were included, and most participants came from academic sickle cell centers, so it may not represent people without comprehensive care access. Studies defined and measured stigma differently, and many did not assess internalized stigma, family stigma, or self-management behaviors. The only intervention study was a pilot with high attrition and did not reduce perceived stigma.
Declared interests
The authors reported no conflicts of interest and said they alone were responsible for content and writing.
The easy way to misread this
Do not read this review as evidence that stigma causes worse pain, delayed care, or poor mental health, or that nurses can reduce stigma through education. Most included studies are descriptive and cross-sectional, and the only intervention trial increased stigma awareness rather than reducing perceived stigma.