At LINCS, Déodat Hounga examined sickle cell disease through the lens of social representations and quality of care in Benin.
The Essentials: At LINCS, Déodat Hounga examined sickle cell disease through the lens of social representations and quality of care in Benin.
Déodat Hounga, researcher at LINCS (Université de Strasbourg).
Thesis defended in 2025 at the doctoral school Doctoral School of Humanities and Social Sciences – European Perspectives (Strasbourg; 2009-....).
Referenced in the ABES/STAR network, this thesis meets the rigor standards of French higher education.
Context and Research Question
Sickle cell disease is the most common genetic disorder in the world, affecting more than 100 million people. This hematological disorder, caused by a mutation in the beta-globin gene, causes red blood cells to become deformed, which can trigger vaso-occlusive crises. Perceptions and management of sickle cell disease vary according to the sociocultural and economic context of the territories concerned. In metropolitan France, it is often regarded as a rare disease, whereas it is endemic in French Guiana and Benin. This difference in the disease's status directly affects patients' quality of life and their access to care.
The main objective of this thesis is to explore how social representations of sickle cell disease influence quality of life and quality of care. By examining the cultural and socioeconomic differences between France, French Guiana and Benin, the study highlights the specific challenges faced by patients and caregivers in each context. The qualitative research aims to give voice to patients, their families and healthcare professionals in order to understand their lived experience of the disease.
Methodology
This qualitative study drew on life narratives and semi-structured interviews conducted with sickle cell patients, their relatives and caregivers across the three territories studied. Participants were selected to represent a diversity of backgrounds and experiences. The interviews gathered accounts of how the disease is perceived, the difficulties encountered in accessing care, and the social representations associated with sickle cell disease.
Data analysis was carried out using a thematic approach, allowing recurring patterns in participants' accounts to be identified. This method made it possible to highlight the similarities and differences in social representations of sickle cell disease across the different contexts.
Key Findings
The study results reveal significant variations in social representations of sickle cell disease depending on the territory. In metropolitan France, although the medical framework is more structured, patients report feeling stigmatized and note a lack of awareness about the disease. This context can lead to delays in diagnosis and inadequate care. Patient accounts indicate that limited awareness of sickle cell disease in society and within healthcare institutions complicates their access to care.
In contrast, in Benin and French Guiana, sickle cell disease is better integrated into the local context. Patients there benefit from recognition of the disease as a public health issue, which facilitates communication with caregivers. However, challenges persist, particularly regarding access to care. Patients face obstacles such as stigmatization, often inadequate health infrastructure, and economic inequalities that limit their access to treatment.
The accounts collected also underscore the importance of support networks, both familial and community-based, in the day-to-day management of the disease. These networks play a crucial role in patients' quality of life by providing a framework of understanding and mutual support.
Discussion and Outlook
The findings of this research highlight the need to take social representations of sickle cell disease into account in order to improve the quality of care offered to patients. Raising awareness and educating healthcare professionals are essential to reduce diagnostic delays and improve patient care in France. In territories where the disease is endemic, it is imperative to strengthen health infrastructure and ensure equitable access to treatment.
Policymakers should consider health policies tailored to the cultural and economic specificities of each territory. The approach must be integrated, taking into account the social issues surrounding sickle cell disease. The implications of this research suggest that sickle cell disease should not be seen solely as a health problem, but also as a social issue requiring coordinated responses.
Future research could further explore the impact of educational interventions on social representations of sickle cell disease and their influence on patients' quality of life. Integrating patient perspectives into health policy could also constitute a relevant avenue for improving quality of care.
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Sources and Access
Déodat Hounga. Drépanocytose entre représentations sociales, qualité de vie et qualité de soins : étude comparative entre la France métropolitaine, la Guyane et le Bénin. Sociologie. Université de Strasbourg, 2025. Français. ⟨NNT : 2025STRAG032⟩. ⟨tel-05627354⟩