Abstract
BackgroundIt is often suggested that an effort must be made to increase awareness among consanguineous couples of their reproductive risk, and to refer them for genetic counseling if needed. Primary care professionals are considered most appropriate for addressing the subject and identifying couples at risk during consultations in their practice. This Dutch study aims to explore the experiences, attitudes and beliefs of such professionals regarding their care for consanguineous couples.MethodsSixteen semi-structured interviews were conducted with midwives and general practitioners.ResultsAlthough most primary care professionals considered it their task to inform couples about the risks of consanguinity, during consultations the topic was generally only briefly touched upon and quickly abandoned. Important reasons for this were professionals’ beliefs about religious and social values of couples, their low perception of the couples’ reproductive risk and expected limited feasibility of referral. Feelings of embarrassment regarding addressing consanguinity did not seem to play a significant role.ConclusionsPrimary care professional beliefs about their clients’ religious and social values, their attitudes toward the risk, and perceived limited options for referral seem to conflict with the professional norm to address the topic of consanguinity.
Highlights
It is often suggested that an effort must be made to increase awareness among consanguineous couples of their reproductive risk, and to refer them for genetic counseling if needed
The primary care workers’ practices, beliefs and attitudes on which we focus in our study will contribute to a better comprehension of the process of care, as well as suggest strategies for improvement of care with regard to the reproductive risk for consanguineous couples
This study clearly shows that the dynamics of the process of identifying and referring consanguineous couples in primary care is complex
Summary
It is often suggested that an effort must be made to increase awareness among consanguineous couples of their reproductive risk, and to refer them for genetic counseling if needed. Primary care professionals are considered most appropriate for addressing the subject and identifying couples at risk during consultations in their practice. This Dutch study aims to explore the experiences, attitudes and beliefs of such professionals regarding their care for consanguineous couples. With the migration of groups from regions where consanguinity is a common practice, the prevalence of consanguineous marriages increased in Western countries. Other possibilities which are sometimes available to consanguineous couples are genetic carrier screening based on ethnicity, or, when pregnant, an advanced ultrasound for detecting fetal anomalies [4]
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