Ecological approach to sickle cell disease and environmental quality assessment in Guadeloupe (French West Indies)

Abstract

Sickle Cell Disease (SCD) has many psychosocial impacts and affects social participation of young people. In Guadeloupe (French West Indies), where this blood disease is a major concern, young patients face a doubly constraining environment, on both social and physical aspects. Based on the Disability Creation Process (DCP), an ecological model of disability and health, this controlled study aimed to assess the perceived influence of social and physical factors. The study involves 80 young patients (Mage = 11.25 ± 3.23, 36 females, 44 males) with severe Sickle Cell Disease (Major Syndrome or Sβ0-thalassemia) and 45 healthy children and adolescents (Mage = 10.55 ± 2.93 years; 22 females, 23 males). The Measure of the Quality of the Environment (MQE) was used, after adaptation of the scale to the socio-cultural context. Results show that environmental factors are more negatively perceived among SCD participants, physical factors constituting strong barriers, and social determinants being weaker facilitators. In the micro and meso-environment, SCD patients face more difficulty; finally, findings suggest that more inclusive spaces are needed in school settings, sports and leisure activities, as well as in the cultural offer.

Keywords

• Sickle Cell Disease
• environment
• disability
• youth
• Caribbean studies