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“We are just not sure what that means or if it's relevant”: Uncertainty when gathering family history information in South African prenatal genetic counseling consultations

Author

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  • Scott, Megan
  • Watermeyer, Jennifer
  • Wessels, Tina-Marie

Abstract

Uncertainty impacts the process of health communication. The management and tolerance of uncertainty during healthcare discussions have gained renewed focus due to the growing challenge of obtaining and delivering complex health information, and the offer of health services in diverse contexts. Prenatal genetic counseling (GC) provides education, support and testing options for patients and couples facing a genetic or congenital diagnosis or risk during pregnancy. Gathering detailed and accurate family history information is essential to determine a patient's genetic risk. In South Africa, contextual factors such as patient literacy, language diversity, limited written patient health records, and a lack of familiarity with GC services may increase the potential for misunderstandings during GC consultations. This study uses a qualitative sociolinguistic approach to analyse 9 video-recorded South African prenatal GC consultations to understand the impact of uncertainty on the process of gathering family history information. The findings reveal uncertainty is introduced in different ways during family history taking. This includes when patients have no knowledge about their family history; when they have some knowledge but the details are unclear; or when patients have knowledge but the details are confusing. Uncertainty can lead to interactional trouble in the form of knowledge asymmetries, interrogative questioning, reversals in epistemic authority, and the potential for mistrust. Suggestions are made for how genetic specialists can manage uncertainty in GC family history taking. These include recognizing contextual sources of uncertainty, understanding how patients may respond to uncertainty and being aware of personal responses to moments of discomfort. Specific communication training recommendations and video-based sociolinguistic methods to enhance reflection and communication practice are highlighted. These approaches may enhance the effectiveness of GC communication and strengthen patient-specialist relationships, especially in diverse settings.

Suggested Citation

  • Scott, Megan & Watermeyer, Jennifer & Wessels, Tina-Marie, 2024. "“We are just not sure what that means or if it's relevant”: Uncertainty when gathering family history information in South African prenatal genetic counseling consultations," Social Science & Medicine, Elsevier, vol. 342(C).
    • Handle: RePEc:eee:socmed:v:342:y:2024:i:c:s0277953623009127
    DOI: 10.1016/j.socscimed.2023.116555
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    References listed on IDEAS

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    1. Paul K. J. Han & William M. P. Klein & Neeraj K. Arora, 2011. "Varieties of Uncertainty in Health Care," Medical Decision Making, , vol. 31(6), pages 828-838, November.
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