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Document Type

Dissertation - University Access Only

Award Date

2013

Degree Name

Doctor of Philosophy (PhD)

Department

Graduate Nursing

First Advisor

Mary Lou Mylant

Abstract

Objective: The purpose of this descriptive, exploratory study is to develop nursing knowledge on how to facilitate health coping among parents whose children are undergoing genetic examination and testing.
Background: As genetic testing becomes more readily available, the expectation escalates that health will be evaluated based on genetics. No studies were found in the literature to have described parents’ experience of coping, social support, and uncertainty during childhood genetic testing.
Methods: This study used a nonexperimental, descriptive, exploratory design. Parent participants completed four survey instruments: demographic information, the Mishel Parents’ Perception of Uncertainty in Illness Scale (PPUS) which was modified to form the PPUS-Genetic Testing Form (PPUS-GTF), the Coping Health Inventory for Parents (CHIP), and the Social Support Index (SSI). Utilizing Mishel’s Uncertainty in Illness Theory (1988) and a proposed conceptual framework based on research questions and hypotheses, this study explored this area of importance to nursing.
Pilot: A pilot study was conducted to determine the feasibility of the demographic questions, the modified PPUS-GTF instrument, and the parents’ acceptance in completing the instruments over the phone. Following Institutional Review Board (IRB) approval, four parents were interviewed with results analyzed using SPSS Version 20. Minor modifications were made to the surveys in preparation for the final study.
Summary: Because children who are referred for genetic testing have exhibited something unusual in their physical or developmental assessment, families seeking genetic information expect genetic testing will answer questions, helping them make decisions or understand situations. When these families contemplate genetic testing, they need to evaluate the value of the test (or tests) in answering their questions and must consider the potentially life-changing results that may occur. This descriptive, exploratory research examined parental experience of coping, social support, and uncertainty in childhood genetic testing. A moderate relationship between high social support and low uncertainty and a strong relationship between high family health coping and low uncertainty were identified. This supports the theorized relationships between these concepts based on Mishel’s Uncertainty in Illness Theory (Mishel, 1988). An exploratory path analysis also indicates that social support may have a direct influence upon lower levels of uncertainty, thus increasing parental coping. This understanding has implications for nursing knowing that social support may best facilitate health coping among parents whose children undergo genetic examination and testing.

Library of Congress Subject Headings

Genetic disorders in children -- Diagnosis.
Parent and child.
Parents -- Psychology.
Parents -- Social networks.

Description

Includes bibliographical references (pages 122-137).)

Format

application/pdf

Number of Pages

190

Publisher

South Dakota State University

Rights

In Copyright - Educational Use Permitted
http://rightsstatements.org/vocab/InC-EDU/1.0/

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