title: Reciprocal Relationships: the Genetic Counselor-Patient Relationship Following a Life-Limiting Prenatal Diagnosis.
abstract: Utilizing the tenet, "Relationship is integral to the genetic counseling process" from the Reciprocal Engagement Model (REM) of genetic counseling practice, this study sought to explore the relationship between the genetic counselor and patient following a "life-limiting" prenatal diagnosis that resulted in a major loss (termination, stillbirth/miscarriage, or neonatal death). The specific aims of this study were to: 1) Understand and describe aspects of the genetic counselor-patient relationship in the context of the life-limiting prenatal diagnosis, and identify characteristics and actions of the 2) genetic counselor and 3) patient that influence the relationship. Genetic counselor (GC) participants were recruited via a web-based survey distributed by NSGC and the NSGC Prenatal SIG. Eligible GCs maintained a relationship with a patient beyond the prenatal diagnosis and had a willing patient participant. Individual 60-min audio-recorded telephone interviews were conducted with eight GC and 8 respective patients (n = 16) using parallel interview guides (n = 16). Transcriptions underwent thematic content analysis for systematic coding and identification of emergent themes. The GC-patient relationship was characterized by the evolution of communication and promoted by the supportive needs of the patient, the nature of the diagnosis, and characteristics and supportive actions of the participants. This exploratory study highlights the unique service of support offered by genetic counselors in the context of a life-limiting prenatal diagnosis.
authors: Genetic Counseling Program, School of Medicine, University of South Carolina, Columbia, SC, USA. andersa4@memorialhealth.com.|Savannah Perinatology Associates, 4750 Waters Avenue, Suite 302, Savannah, GA, 31404, USA. andersa4@memorialhealth.com.
authors: S R
authors: SR
authors: Williams
authors: Division of Medical Genetics, Duke University Medical Center, Durham, NC, USA.
authors: K L
authors: KL
authors: Berrier
authors: Psychology Intern, Student Counseling Services, University of Minnesota, Minneapolis, MN, USA.
authors: K
authors: K
authors: Redlinger-Grosse
authors: Genetic Counseling Program, University of South Carolina, Columbia, SC, USA.
authors: J G
authors: JG
authors: Edwards
mesh_terms: D000328:Adult; D003142:Communication; D000072117:Counselors / Q000523:psychology*; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D006801:Humans; D008875:Middle Aged; D008962:Models, Theoretical; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000523:psychology*; D011369:Professional-Patient Relations; D011795:Surveys and Questionnaires
keywords: Genetic counseling; Lethal; Life-limiting; Prenatal diagnosis; Reciprocal-engagement model; Relationship; Rem