‘The white blood cell always eat the red’: how Jamaicans with sickle cell disease understand their illness

The lived experiences of adolescents with sickle cell disease in Kingston, Jamaica

“…This implies that as adolescents and their families became more knowledgeable about the factors that trigger a sickle cell crisis and ways of preventing complications, they were better able to cope with the disease. Jamaican patients with SCD have placed it in a particular socio-cultural context which allows them to cope (Anderson & Asnani, 2015 ). Furthermore, by reducing hospitalizations the adolescents had more opportunities to be involved in social activities.…”

Patient with sickle cell anemia

“…In addition, much of the information is reported to have been given by health professionals, or obtained from reading materials on sickle cell anemia. In this research, as a preventive strategy to strengthen the body, participants believe that enjoying a healthy diet with iron source foods decreases the depletion of red blood cells [55]. In the same research, the patients interviewed reported that at low temperatures and prolonged periods in the water, the blood "clogs", or gets blocked causing a painful crisis.…”

“…To do this, they believe that keeping the body warm makes the blood flow, and that they should also avoid rain and cold. Although medicine does not attribute sickle pain to poor circulation, doctors believe that its intensity increases on cold days and in humid conditions [55].…”

The Construction of Sickle Cell Disorder in Saudi Arabia: The Invisible Disease

“…Thomas et al (2001) concluded that diversity in communities led to the construction of different perceptions and coping strategies and as such, in order to effectively manage sickle cell disease, differences in patient responses needed to be understood. More recent research on the experiences of Jamaican individuals with SCD also reported better self-management of this disorder as the patients experienced SCD in a sociocultural context that emphasised coping and positive outcomes (Anderson & Asnani, 2016;Forrester, Barton-Gooden, Pitter, & Lindo, 2015). Fertility is also important in the Jamaican culture and influences decisions about reproduction where "not having a childmighthavemadeitworthriskingtransmission" (Anderson&Asnani,2016,p.…”

“…Although it was generally known that the disease was genetic, most people did not acknowledge or fully understand the meaning of genetic, or the direct consequences of having a genetic condition, such as SCD. The issues that underpinned the interpretation of the concept of a genetic disease were reported in a study in Jamaica (Anderson & Asnani, 2016) where it was generally acknowledged that SCD is hereditary and yet understandings around the biomedical aspects, such as probability and mechanism of transmission, were diverse. As Featherstone, Atkinson, Bharadwaj, and Clarke (2006) As alluded to above, there are conflicting views in the current research on what constitutes adequate and effective knowledge about SCD.…”