Caregiver Perception of Sickle Cell Disease Stigma in Ghana: An Ecological Approach.
Julie M Buser, Ashura Bakari, Abdul-Aziz Seidu and 5 others
PMID 32883582WHAT IT FOUND
Ghanaian caregivers of children with sickle cell disease said they were blamed for having a 'cursed' child, shamed as money wasters, and harmed by public ignorance.
They linked stigma to spiritual myths and unaffordable treatment.
Key findings
01Every caregiver participant reported experiencing sickle cell disease stigma.
02Caregivers described stigma from blame that the disease was a curse or punishment, public misconception about sickle cell disease, and shame about the financial burden of care.
03Most participants said they could not afford necessary medicines, and a couple sold personal belongings and still could not pay.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The findings come from caregivers in three facilities in one city, so they may not represent families in other regions or countries. The article does not state a clear total number of participants, and it reports saturation after five interviews. Most participants were women, and only two men were included, so fathers' experiences may be underrepresented. Caregivers who did not bring children to health facilities were not sampled, so families not accessing care may have different stigma experiences. The study reports perceptions and themes, not patient outcomes or tested effects of any intervention.
Declared interests
The authors declared no conflicts of interest. The article is listed as supported by NIH extramural research.
The easy way to misread this
Do not read these themes as evidence that stigma reduction works. This was a descriptive interview study of caregivers in one region, and it did not test an intervention.