Assessment of life habits in young (6-16) SCD patients and controls living in Guadeloupe
Objective. Sickle Cell Disease (SCD) has many psychosocial impacts, especially on young populations. This controlled study aimed to assess the social participation of children and adolescents with SCD living in Guadeloupe. The theoretical framework is the Disability Creation Process model (DCP), a social and systemic approach of health and disability. Design. The study involved 81 young patients (Mage = 11.22±3.22, 37 female, 44 male) with severe SCD (Major Sickle Cell Syndrome or Sβ0-thalassemia). The control group included 45 healthy children and adolescents (Mage = 10.55±2.93 years; 22 female, 23 male). In addition to socio-demographic data, social participation (i.e., daily activities and social roles) was assessed, after adapting the measurement tool (LIFE-H) to the socio-cultural context (Cholley-Gomez et al., 2020). Results. The results show significant differences between groups, with a lower global participation for SCD group, and in the accomplishment of their habits of life, particularly in leisure activities, schooling, community life, and mobility (p < .01). Among the socio-demographic variables, marital situation contributes to a higher level of participation and to a better accomplishment of both current activities and social roles (p < .01), supporting the hypothesis of a family environment that is both protecting and compensating of limitations. Conclusion. The conceptual rooting in the DCP model is relevant for understanding this chronic disease. SCD impacts the fulfilment of numerous life habits that also help to build a sense of identity and to socialisation. Studies are needed to provide further analyses and to determine the influence of environmental factors on social participation.