Development and early implementation of an Accessible, Relational, Inclusive and Actionable approach to genetic counseling: The ARIA model.

Communication Counselors Curriculum Genetic Counseling Genomics Humans
Genetic counseling Genetics education Genomics Health communication Health literacy Medically underserved

Journal

Patient education and counseling
ISSN: 1873-5134
Titre abrégé: Patient Educ Couns
Pays: Ireland
ID NLM: 8406280

Informations de publication

Date de publication:
05 2021
Historique:
received: 14 03 2020
revised: 07 12 2020
accepted: 21 12 2020
pubmed: 8 2 2021
medline: 22 5 2021
entrez: 7 2 2021
Statut: ppublish

Résumé

To describe the training and early implementation of the ARIA model of genetic counseling (Accessible, Relational, Inclusive, Actionable). As part of the Cancer Health Assessments Reaching Many (CHARM) study, an interdisciplinary workgroup developed the ARIA curriculum and trained genetic counselors to return exome sequencing results using the ARIA model. The ARIA curriculum includes didactic elements, discussion, readings, role plays, and observations of usual care genetic counseling sessions. The ARIA model provides the skills and strategies needed for genetic counseling to be accessible to all patients, regardless of prior knowledge or literacy level; involves appropriate psychological and social counseling without overwhelming the patient with information; and leaves the patient with clear and actionable next steps. With sufficient training and practice, the ARIA model appears to be feasible, with promise for ensuring that genetic counselors' communication is accessible, relational, inclusive and actionable for the diverse patients participating in genomic medicine. ARIA offers a coherent set of principles and strategies for effective communication with patients of all literacy levels and outlines specific techniques to practice and incorporate these skills into routine practice. The ARIA model could be integrated into genetic counseling training programs and practice, making genetic counseling more accessible and meaningful for all patients.

Identifiants

DOI: 10.1016/j.pec.2020.12.017 PMID: 33549385 PMC: PMC8881934
pubmed: 33549385
pii: S0738-3991(20)30681-9
doi: 10.1016/j.pec.2020.12.017
pmc: PMC8881934
mid: NIHMS1657506
pii:
doi:

Types de publication

Journal Article Research Support, N.I.H., Extramural

Langues

eng

Pagination

969-978

Subventions

Organisme : NHGRI NIH HHS
ID : U01 HG007292
Pays : United States
Organisme : NHGRI NIH HHS
ID : U01 HG007307
Pays : United States
Organisme : NHGRI NIH HHS
ID : U24 HG007307
Pays : United States
Organisme : NHGRI NIH HHS
ID : UM1 HG007292
Pays : United States

Informations de copyright

Copyright © 2020 Elsevier B.V. All rights reserved.

Déclaration de conflit d'intérêts

Declaration of Competing Interest The authors report no declarations of interest.

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Auteurs

Leslie Riddle (L)

Department of Humanities and Social Sciences, University of California, San Francisco, 1450 3rd St., San Francisco, CA 94158, USA.

Laura M Amendola (LM)

Division of Medical Genetics, Department of Medicine, University of Washington Medical Center, 1705 NE Pacific St. Box 357720, Seattle, WA 98195, USA.

Marian J Gilmore (MJ)

Department of Translational and Applied Genomics, Kaiser Permanente Center for Health Research, 3800 N. Interstate Ave., Portland, OR 97227, USA.

Claudia Guerra (C)

Department of General Internal Medicine, University of California, San Francisco, 1450 3rd St. Box 0128, San Francisco, CA 94158, USA.

Barbara Biesecker (B)

RTI International, 701 13th St. NW, Washington, D.C., 20005, USA.

Tia L Kauffman (TL)

Department of Translational and Applied Genomics, Kaiser Permanente Center for Health Research, 3800 N. Interstate Ave., Portland, OR 97227, USA.

Katherine Anderson (K)

Denver Health and Hospital Authority, MC 3150, 777 Bannock, Denver, CO 80204, USA.

Alan F Rope (AF)

Department of Translational and Applied Genomics, Kaiser Permanente Center for Health Research, 3800 N. Interstate Ave., Portland, OR 97227, USA.

Michael C Leo (MC)

Kaiser Permanente Center for Health Research, 3800 N. Interstate Ave., Portland, OR 97227, USA.

Mikaella Caruncho (M)

Department of Humanities and Social Sciences, University of California, San Francisco, 1450 3rd St., San Francisco, CA 94158, USA.

Gail P Jarvik (GP)

Division of Medical Genetics, Department of Medicine, University of Washington Medical Center, 1705 NE Pacific St. Box 357720, Seattle, WA 98195, USA.

Benjamin Wilfond (B)

Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, M/S JMB-6, 1900 Ninth Ave., Seattle, WA 98101, USA.

Katrina A B Goddard (KAB)

Department of Translational and Applied Genomics, Kaiser Permanente Center for Health Research, 3800 N. Interstate Ave., Portland, OR 97227, USA.

Galen Joseph (G)

Department of Humanities and Social Sciences, University of California, San Francisco, 1450 3rd St., San Francisco, CA 94158, USA.

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