Jennine Bouchard, Ian MacFarlane, Patricia McCarthy Veach, Janice A Baker, Krista Redlinger-Grosse
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引用次数: 0
Abstract
Empathy, the ability to understand and communicate another's experience to them, positively affects genetic counseling processes and outcomes. Genetic counseling, a specialty healthcare profession, provides education and support for those impacted by genetic disease; thus, empathy is critical. Limited studies have explored patients' perceptions of genetic counselor (GC) empathy responses. This study investigated the types of GC responses proxy patients perceived as most empathic and why. Female MTurk workers (n = 198) completed a survey containing two hypothetical genetic counseling scenarios (Fabry disease; postnatal diagnosis of cleft lip and palate) that ended with a patient statement followed by five different GC responses. Participants were asked to identify the GC response that best conveyed empathy and explain their choice. Every GC response was selected by at least one participant. Inductive content analysis of participants' rationales yielded six categories: Understanding, Problem Solving, Sympathizing, Focusing on the Patient, Validating, and Miscellaneous. Understanding was the most prevalent rationale for both scenarios (~ 50% each). While GC responses containing the words "I'm sorry…" were chosen most often for both scenarios (~ 45% each), Sympathizing was the rationale for only ~ 20% of these GC responses. Logistic regression analyses showed significant predictors varied across scenarios and between rationales, with few significant demographic predictors. Participants differed in preferences for empathy statements and rationales, signaling context and tailoring are important when considering empathy. Patient demographics are not recommended in predicting the type of GC patients may find empathic. Ongoing assessment of patients' feelings and needs (empathic resonance) will allow genetic counselors to tailor their empathy communication (expressed empathy) accordingly.
期刊介绍:
The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals.
Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues.
The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries.
The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.