Hunting for zebras: the enculturation and socialization of genetic counselors

Genetic counselors (GCs) serve as health professionals who bridge the gap between patients and genetic medicine. Understanding the processes of genetic counselor enculturation and socialization gives a better picture of how these unique clinicians navigate the spaces between biomedical explanatory models and patient illness narratives, especially pertaining to how biomedicine has influenced how GCs experience the world and shape their professional and personal identities. In this two year-long study, I observed GCs, their students, faculty, patient presenters, and other guests of a genetic counselor training program (“GC Program”) to better understand the ways biomedical discourse is internalized and perpetuated through generations of students. Through semi-structured interviews, a free-listing exercise, and the analysis of applicant essays, I focus on how ritualized process leads to the experience of biomedically influenced periods of enculturation and socialization for GC students, applicants, and professionals who have graduated. I discuss how technology and materializing devices allow for the construction and interpretation of genetic identities closely tied to a counseling profession, which can either magnify the personal identities of its members or alienate those who feel as though they do not belong. The identities of genetic professionals force patients into ideal medical imaginaries; however genetic counselors set themselves apart from overlying biomedical structures as clinicians who defy norms to better take care of their patients. Last, I provide suggestions on how the field of genetic counseling can expand its interpretations of genetic citizenship and responsibility to broaden its reach and deepen its rich history of compassionate advocacy for its patients and members

Patients’ Experience of Specialty Care Coordination: Survey Development and Validation

Purpose: Specialty care coordination relies on information flowing bidirectionally between all three participants in the “specialty care triad” — patients, primary care providers (PCPs), and specialists. Measures of coordination should strive to account for the perspectives of each. As we previously developed two surveys to measure coordination of specialty care as experienced by PCPs and specialists, this study aimed to develop and evaluate the psychometric properties of a related survey of specialty care coordination as experienced by the patient, thereby completing the suite of surveys among the triad. Methods: We developed a draft survey based on literature review, patient interviews, adaptation of existing measures, and development of new items. Survey responses were collected via mail and online in two waves, August 2019–November 2019 and September 2020–May 2021, among patients (N = 939) receiving medical specialty care and primary care in the Veterans Affairs health system. Exploratory and confirmatory factor analysis were used to assess scale structure. Multiple linear regression was used to examine the relationship of the final coordination scales to patients’ overall experience of specialty care coordination. Results: A 38-item measure representing 10 factors that assess the patient’s experience of coordination in specialty care among the patient, PCP, and specialist was finalized. Scales demonstrated good internal consistency reliability and, together, explained 59% of the variance in overall coordination. Analyses revealed an unexpected construct describing organization of care between patient and specialist that accounted for patient goals and preferences; this 10-item scale was named Patient-Centered Care Coordination. Conclusions: The final survey, Coordination of Specialty Care – Patient, or CSC-Patient for short, is a reliable instrument that can be used alone or with its companions (CSC-PCP, CSC-Specialist) to provide a detailed assessment of specialty care coordination and identify targets for coordination improvement