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.

中文翻译：

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喀麦隆农村脆性 X 综合征病因的解释模型

在智力残疾 (ID) 的众多原因中，脆性 X 综合征 (FXS) 是主要的遗传原因。然而，人们对受这种情况影响的人如何理解它知之甚少。本研究旨在调查主要受这种情况影响的大家庭和他们起源于喀麦隆的村庄成员中 FXS 原因的解释模型。使用人种学方法，在 2018 年 4 月至 2020 年 2 月期间，通过 10 次焦点小组讨论和 23 次深度访谈，采访了 92 名参与者（59 名女性和 33 名男性）。数据分析揭示了关于社区 FXS 病因的四个解释模型。首先，诅咒模型描述了来自酋长的诅咒，因为他相信他的妻子不会哀悼他的智障仆人。第二，精神模型将 FXS 与来自上帝的惩罚联系起来。第三，社会经济模型将 FXS 归因于产前和围产期的事件。最后，遗传模型描述了家族中疾病的遗传模式。本文有助于了解喀麦隆农村 FXS 存在的解释性疾病模型，并可在起草公众参与活动协议时为遗传咨询实践、社区遗传教育和政策制定者提供信息。