Sickle Cell Anemia, Representations and Care: Experience of a Brother of a Sick Child in Cameroon

Abstract

In Africa, families often with more than one child consult with both modern and traditional African medicine to treat their child with sickle cell anemia. This research aimed to understand how a child experiences both the medical and traditional care of his sister. We collected data from an interview and family drawing of a young boy growing up with an affected sister in Cameroon. Results showed this child persisted to feel as though his sister had fallen victim to a sorcerer and that he was at risk of the same fate even after the two of them received traditional treatment. He also felt neglected about his suffering because of his sister's disease by hospital professionals that were caring for her. It is therefore necessary to establish a support system for affected children and their family by providing a safe space in hospitals where they can express and contain their experiences with the disease.

The psychological experience of sickle cell disease in a Cameroonian adolescent living with her grandparents

“…These results show that this patient registers her illness in a Western medical register from which she gives it meaning. This relationship to illness and care contrasts with that described by recent literature (Dong & Njifon Nsangou, 2022;Njifon Nsangou, 2022a;Njifon Nsangou & Scelles, 2021), who discuss the conflict between traditional beliefs and modern medical practices in the treatment of sickle cell disease in Cameroon. Contrary to studies that suggest a high level of acceptance of biomedical treatment among urban populations (Richard, Mubiri, & Bioy, 2014), our study reveals persistent reliance on traditional beliefs in rural settings, complicating compliance and overall disease management.…”

“…Life expectancy for a person suffering from sickle cell disease in Cameroon is estimated at 25 years. This hope is, in part, due to the absence of a national policy to fight this lethal and fatal disease unlike other diseases such as HIV/AIDS, the treatment of which the government subsidizes in partnership with international organizations (Njifon Nsangou & Scelles, 2021). Due to the absence of universal health insurance, the care of patients with sickle cell disease remains costly for them and their families.…”

“…Due to the absence of universal health insurance, the care of patients with sickle cell disease remains costly for them and their families. These patients and their families face representations of illness, a source of suffering for patients and members of their families (Njifon Nsangou & Scelles, 2021).…”

“…Sickle cell disease is culturally thought of as the manifestation and/or consequence of the transgression of an ancestral norm by the patient or by a member of their family group (Njifon Nsangou, 2022a, 2022bNjifon Nsangou & Scelles, 2021). Most often, it is the mother who is designated as the main responsible for this illness, she is often accused, as in most cases of child disability in the sub-Saharan African context (Tsala Tsala, 1996), of having transgressed an ancestral norm during pregnancy (Njifon Nsangou, 2022a;Tsala Tsala, 2009a).…”

“…Literature suggests that the psychosocial burden of sickle cell disease is immense, with profound effects on family structures and individual development (Njifon Nsangou & Scelles, 2021). Adolescents, navigating critical developmental milestones, may experience exacerbated stress when medical care becomes a dominant aspect of their daily lives (Richard, Mubiri, & Bioy, 2014).…”