Connecting-Africa | Find publications

Advanced search

Find:


Title Caught between pity, explicit bias, and discrimination: a qualitative study on the impact of stigma on the quality of life of persons living with sickle cell disease in three African countries
Full text https://escholarship.org/uc/item/25f8c0xc
Date 2023
Author(s) Munung, Nchangwi Syntia; Treadwell, Marsha; Kamga, Karen Kengne; Dennis-Antwi, Jemima; Anie, Kofi; Bukini, Daima; Makani, Julie; Wonkam, Ambroise
Abstract PurposeSickle cell disease (SCD) is an inherited blood disorder characterized by unpredictable episodes of acute pain and numerous health complications. Individuals with SCD often face stigma from the public, including perceptions that they are lazy or weak tending to exaggerate their pain crisis, which can profoundly impact their quality of life (QoL).MethodsIn a qualitative phenomenological study conducted in Cameroon, Ghana, and Tanzania, we explored stakeholders' perceptions of SCD-related stigma using three analytical frameworks: Bronfenbrenner's Ecological Systems Theory; The Health Stigma and Discriminatory Framework; and A Public Health Framework for Reducing Stigma.ResultsThe study reveals that SCD-related stigma is marked by prejudice, negative labelling and social discrimination, with derogatory terms such as sickler, ogbanje (one who comes and goes), sika besa (money will finish), ene mewu (I can die today, I can die tomorrow), vampire (one who consumes human blood), and Efiewura (landlord-of the hospital), commonly used to refer to individuals living with SCD. Drivers of stigma include frequent crises and hospitalizations, distinct physical features of individuals living with SCD, cultural misconceptions about SCD and its association with early mortality. Proposed strategies for mitigating stigma include public health education campaigns about SCD, integrating SCD into school curricula, healthcare worker training and community engagement.ConclusionThe results highlight the importance of challenging stigmatizing narratives on SCD and recognizing that stigmatization represents a social injustice that significantly diminishes the QoL of individuals living with SCD.
Subject(s) Health Services and Systems; Health Sciences; Health Services; Behavioral and Social Science; Hematology; Rare Diseases; Chronic Pain; Pain Research; Clinical Research; Sickle Cell Disease; Good Health and Well Being; Africa; Cameroon; Discrimination; Explicit bias; Ghana; Pity; Quality of life; Sickle cell disease; Stigma; Tanzania; Public Health and Health Services; Psychology; Health Policy & Services; Health sciences; Human society
Publisher eScholarship, University of California
Type of publication article
Rights CC-BY
Identifier qt25f8c0xc
Repository Berkeley - University of California
Added to C-A: 2023-12-04;09:21:04