Explanatory models for the cause of Fragile X Syndrome in rural Cameroon.

Autor: Kengne Kamga K; Division of Human Genetics, Department of Pathology, University of Cape Town, Cape Town, South Africa., De Vries J; Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa., Nguefack S; Department of Pediatrics, Faculty of Medicine and Biomedical Sciences, University of Yaoundé 1, Yaoundé, Cameroon., Munung NS; Division of Human Genetics, Department of Pathology, University of Cape Town, Cape Town, South Africa., Wonkam A; Division of Human Genetics, Department of Pathology, University of Cape Town, Cape Town, South Africa.; Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.; Institute of Infectious Disease and Molecular Medicine (IDM), Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
Jazyk: angličtina
Zdroj: Journal of genetic counseling [J Genet Couns] 2021 Dec; Vol. 30 (6), pp. 1727-1736. Date of Electronic Publication: 2021 Jun 17.
DOI: 10.1002/jgc4.1440
Abstrakt: Among the myriad causes of intellectual disability (ID), Fragile X Syndrome (FXS) is the leading genetic cause. Yet, little is known of how people affected by this condition make sense of it. The present study aimed to investigate the explanatory models for the causes of FXS in an extended family mainly affected by this condition and members of the village from which they originated in Cameroon. Using an ethnographic approach, 92 participants were interviewed (59 females and 33 males) through 10 focus group discussions and 23 in-depth interviews between April 2018 and February 2020. Data analysis revealed four explanatory models regarding the etiologies of FXS in the community. Firstly, the curse model described a curse from the chief because of the belief that his wives did not mourn his intellectually disabled servant. Secondly, the spiritual model relates FXS to a punishment from God. Thirdly, the socioeconomic model attributes FXS to events in the prenatal and perinatal periods. Finally, the genetic model describes the pattern of inheritance of the disease in the family. This paper helps to understand the explanatory disease models that exist for FXS in rural Cameroon and could inform genetic counseling practices, community genetic education, and policymakers when drafting protocols for public engagement activities.
(© 2021 The Authors. Journal of Genetic Counseling published by Wiley Periodicals LLC on behalf of National Society of Genetic Counselors.)
Databáze: MEDLINE
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