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The Experience of Patients who are Blind or Low Vision in Genetic Counseling; A Qualitative Study About Effective Patient Education.

Record Type:	Electronic resources : Monograph/item
Title/Author:	The Experience of Patients who are Blind or Low Vision in Genetic Counseling; A Qualitative Study About Effective Patient Education./
Author:	Dellas, Helen.
Description:	1 online resource (46 pages)
Notes:	Source: Masters Abstracts International, Volume: 83-11.
Contained By:	Masters Abstracts International83-11.
Subject:	Genetics. -
Online resource:	http://pqdd.sinica.edu.tw/twdaoapp/servlet/advanced?query=29163383click for full text (PQDT)
ISBN:	9798438770893

The Experience of Patients who are Blind or Low Vision in Genetic Counseling; A Qualitative Study About Effective Patient Education.
Dellas, Helen.

The Experience of Patients who are Blind or Low Vision in Genetic Counseling; A Qualitative Study About Effective Patient Education. - 1 online resource (46 pages)

Source: Masters Abstracts International, Volume: 83-11.

Thesis (M.S.)--Brandeis University, 2022.

Includes bibliographical references

There are millions of blind and low vision individuals in the United States, and many genetic disorders are associated with vision loss. Coupled with the growth of the genetic counseling field, it is important that we identify ways to improve the genetic counseling experience for this patient population. As genetic counseling strives to be more accessible to all, regardless of race, socioeconomic, or disability status, it is important to gather the opinions of those groups that we wish to assist. However, to this date, there is limited information about the needs of blind and low vision patients when it comes to genetic counseling. This qualitative study is the first of our knowledge to interview individuals who self-identify as either blind or having low vision, about their experience with genetic counseling.Ten individuals who identify as blind or low vision and have recently had genetic counseling were interviewed to determine what this experience is like and consider ways it can be improved, especially regarding effective patient education. All interviews were transcribed, and coded using an inductive approach in Atlas.ti9. Sixty-four codes were utilized, and five of the ten transcripts were independently coded by a second researcher to ensure concordance. Ultimately, five themes emerged from this coding analysis: 1) Inaccessibility, 2) Support systems and autonomy, 3) Feelings about vision loss or disability, 4) Assistive methods, and 5) Service delivery models. Recommendations were made to the field of genetic counseling that emphasized the central tenets of genetic counseling, including offering accessible counseling materials, evaluating patient support systems, and utilizing empathic understanding. Further research is needed to determine whether these themes can be generalized to the greater blind or low vision patient population.

Electronic reproduction.
Ann Arbor, Mich. :
ProQuest,
2023

Mode of access: World Wide Web

ISBN: 9798438770893Subjects--Topical Terms:

530508
Genetics.
Subjects--Index Terms:

AccessibilityIndex Terms--Genre/Form:

542853
Electronic books.

The Experience of Patients who are Blind or Low Vision in Genetic Counseling; A Qualitative Study About Effective Patient Education.
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