The lived experience of Jordanian parents of children with cystic fibrosis : qualitative study

Other Title(s)

التجربة المعاشة لأولياء الأمور الأردنيين للأطفال المصابين بالتليف الكيسي : دراسة نوعية

Dissertant

al-Adayilah, Anas Ghazi Ali

Thesis advisor

Ubaydat, Hala Mahmud
Khumaysah, Abd Allah Musa

University

Mutah University

Faculty

College of Nursing

Department

Maternal and Child Health Nursing Department

University Country

Jordan

Degree

Master

Degree Date

2020

English Abstract

Purpose: The purpose of this study is to describe and explore the lived experience of parents of children with cystic fibrosis, the difficulties and challenges they face, and how to cope with these challenges.

Design and method: This study is a qualitative descriptive phenomenological design that used to collect data, the sample was 25 participants who have children with cystic fibrosis, the sample was collected by the Jordan Cystic Fibrosis Friends’ Charity, between March and July 2020, by using semi-structured narrative interview.

After collecting the data, analysis was done by using thematic analysis according to Scribber.

Results: Four main themes emerged.

First, "Falling into the circle of suffering", this theme includes the psychological response of parents when diagnosis.

Second, the "The circle of suffering", which consists of two subthemes: the challenges, and the limitations in daily life.

Third: "Coping within the circle of suffering", which consists of four sub-themes: focus on problem, focus on emotion, social and economic factors, and spirituality.

Fourth: "Future outlook", the fourth theme includes two sub-themes: optimism about the future, and pessimism about the future.

Conclusion: The study concluded that parents of children with cystic fibrosis suffer from difficulties and challenges that lead to limitations on aspects of daily life.

There is a need to educate health care providers, society and parents about cystic fibrosis and how to deal with it, and to develop methods that support parents to improve the quality of life for themselves and their children.

Main Subjects

Materials Science , Minerals

No. of Pages

86

Table of Contents

Table of contents.

Abstract.

Abstract in Arabic.

Chapter One : Introduction.

Chapter Two : Literature review.

Chapter Three : Methodology.

Chapter Four : Results.

Chapter Five : Discussion.

References.

American Psychological Association (APA)

al-Adayilah, Anas Ghazi Ali. (2020). The lived experience of Jordanian parents of children with cystic fibrosis : qualitative study. (Master's theses Theses and Dissertations Master). Mutah University, Jordan
https://search.emarefa.net/detail/BIM-1340233

Modern Language Association (MLA)

al-Adayilah, Anas Ghazi Ali. The lived experience of Jordanian parents of children with cystic fibrosis : qualitative study. (Master's theses Theses and Dissertations Master). Mutah University. (2020).
https://search.emarefa.net/detail/BIM-1340233

American Medical Association (AMA)

al-Adayilah, Anas Ghazi Ali. (2020). The lived experience of Jordanian parents of children with cystic fibrosis : qualitative study. (Master's theses Theses and Dissertations Master). Mutah University, Jordan
https://search.emarefa.net/detail/BIM-1340233

Language

English

Data Type

Arab Theses

Record ID

BIM-1340233