Explaining mendelian inheritance in genetic consultations: An IPR study of counselor and counselee experiences

Rhona Macleod, Theodora Gale, Sara Pasalodos-Sanchez, Lauren Kerzin-Storrar, Georgina Hall, Rhona MacLeod

    Research output: Contribution to journalArticlepeer-review

    Abstract

    The explanation of Mendelian inheritance is a key component of most genetic counselling consultations, yet no evidence base exists for this area of practice. This qualitative study used Interpersonal Process Recall (IPR) to explore how information about X-linked inheritance is provided and received in genetic counseling. Twelve consultations involving two senior genetic counselors and 21 counselees were videotaped. Section(s) of videotape featuring the explanation were subsequently played back separately to both counselees and counselors and their responses and reflections recorded. All interviews were fully transcribed and analysed using the constant comparison method. A personalised diagram, drawn "live" by the counselor during the consultation was recalled by counselees as being central to their understanding of the "bottom line". This helped bridge the gap between scientific information and their family experience and did not appear to require a baseline understanding of genetic concepts such as genes or chromosomes. Counselors reflected on the diagram's positive impact on the way they sequenced, paced and tailored the explanation. A positive counselor-counselee relationship was vital even during this educative exchange: for counselees to feel at ease discussing complex genetic information and to help gauge counselee understanding. © 2009 National Society of Genetic Counselors, Inc.
    Original languageEnglish
    Pages (from-to)55-67
    Number of pages12
    JournalJournal of Genetic Counseling
    Volume19
    Issue number1
    DOIs
    Publication statusPublished - Feb 2010

    Keywords

    • Genetic counselling
    • Interpersonal Process Recall
    • Observation
    • Patient education
    • Process research
    • Reflective practice
    • X-linked

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