Characterizing the Genetic Counselor's Role in Hematology.

چکیده اصلی

Hematology is an emerging subspecialty in genetic counseling. In order to standardize current practice and provide a solid foundation for advancement and growth, it is crucial to characterize the role of genetic counselors (GCs) working in this space. To date, no such characterization has been established. The purpose of this study was to characterize the roles of genetic counselors working in the field of hematology, explore GCs' preparedness for work in hematology, and assess whether non-hematology GCs perceived a value in having designated hematology GCs at their institutions. A survey distributed through the National Society of Genetic Counselors (NSGC) listserv yielded responses from 92 individuals meeting the inclusion criteria, with 84 participants providing complete responses that were analyzed in this study. Numerous aspects of the roles of the hematology genetic counselor role were characterized, including job settings (clinical: multidisciplinary team, independent visits, hematologist-paired; non-clinical), patient population served (diagnoses and quantity/length/recurrence of visits), and elements of genetic counseling competencies and skills utilized in various settings. Hematology-specific knowledge acquisition was reported to occur largely outside of typical didactic and experiential components of GC training programs, commonly via independent learning and also through on-the-job training sometimes supported by GC or hematology colleagues. Seventy percent of non-hematology GCs indicated that it would be beneficial to have a designated hematology GC at their institutions, citing feeling less equipped to see all hematological indications. The findings from this study begin to define the current roles of hematology GCs, emphasize the need for dedicated resources and expertise to address patient needs in this subspecialty. Ultimately, this can inform opportunities for expansion of the field further into the hematology domain.

ترجمه فارسی چکیده

هماتولوژی یک زیرتخصص نوظهور در مشاوره ژنتیک است. هدف این مطالعه، تعیین نقش مشاوران ژنتیک (GC) در این حوزه، بررسی آمادگی آن‌ها و ارزیابی ارزش داشتن مشاوران اختصاصی هماتولوژی توسط سایر مشاوران بود. پرسشنامه‌ای از طریق لیست ایمیل انجمن ملی مشاوران ژنتیک (NSGC) پاسخ‌های ۸۴ فرد کامل را جمع‌آوری کرد. نقش‌ها از نظر محیط کار، جمعیت بیمار و مهارت‌های مورد استفاده مشخص شد. دانش تخصصی هماتولوژی عمدتاً خارج از دوره‌های آموزشی استاندارد و از طریق یادگیری مستقل و آموزش حین کار به دست آمد. ۷۰٪ از مشاوران غیرهماتولوژی بیان کردند که وجود مشاور هماتولوژی در موسسات مفید است.

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