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Introduction

Nurses play a critical role in providing care to patients with various medical conditions, including rare diseases such as Friedreichʼs ataxia. Friedreichʼs ataxia is a debilitating neurodegenerative disorder that affects coordination and muscle strength, leading to significant mobility limitations. The experiences of nurses providing care to patients with Friedreichʼs ataxia have not been extensively explored in the existing literature.

This thesis aims to fill this gap by exploring the experiences of nurses caring for patients with Friedreichʼs ataxia. By understanding the challenges, rewards, and strategies employed by nurses in this setting, we can improve the quality of care provided to patients with this rare disease.

Table of Contents

Chapter 1: Introduction
1.1 Introduction
1.2 Background of study
1.3 Problem Statement
1.4 Objective of the study
1.5 Limitation of the study
1.6 Scope of the study
1.7 Significance of the study
1.8 Structure of the Thesis
1.9 Definition of terms

Chapter 2: Literature Review
2.1 Overview of Friedreichʼs ataxia
2.2 The role of nurses in caring for patients with neurodegenerative diseases
2.3 Challenges faced by nurses in caring for patients with Friedreichʼs ataxia
2.4 Strategies for providing quality care to patients with Friedreichʼs ataxia
2.5 The impact of Friedreichʼs ataxia on patients and families
2.6 Existing models of care for patients with Friedreichʼs ataxia
2.7 The importance of multidisciplinary care for patients with Friedreichʼs ataxia
2.8 Gaps in the current literature
2.9 Theoretical framework
2.10 Summary of the literature review

Chapter 3: Research Methodology
3.1 Research design
3.2 Sampling and recruitment
3.3 Data collection methods
3.4 Data analysis
3.5 Ethical considerations
3.6 Rigor and trustworthiness
3.7 Reflexivity
3.8 Researcher positionality
3.9 Limitations of the methodology

Chapter 4: Discussion of Findings
4.1 Overview of participants
4.2 Themes identified from the data
4.3 Comparison to existing literature
4.4 Implications for nursing practice
4.5 Implications for future research
4.6 Strengths and limitations of the study
4.7 Recommendations for healthcare organizations
4.8 Recommendations for policy

Chapter 5: Conclusion and Summary
5.1 Summary of key findings
5.2 Contributions to the field
5.3 Implications for nursing practice
5.4 Recommendations for future research
5.5 Conclusion

Thesis Overview

This thesis explores the experiences of nurses providing care to patients with Friedreichʼs ataxia, a rare neurodegenerative disorder. The introduction sets the stage for the study by outlining the background, problem statement, objectives, limitations, scope, significance, structure, and definition of terms.

The literature review provides a comprehensive overview of Friedreichʼs ataxia, the role of nurses in caring for patients with neurodegenerative diseases, challenges faced by nurses, strategies for providing quality care, the impact on patients and families, models of care, multidisciplinary care, gaps in the literature, and the theoretical framework.

The research methodology chapter details the design, sampling, data collection, analysis, ethics, rigor, reflexivity, researcher positionality, and limitations of the study. The discussion of findings chapter presents participant information, themes identified, comparisons to the literature, implications for practice and research, strengths and limitations, and recommendations.

The thesis concludes with a summary of key findings, contributions to the field, implications for nursing practice, recommendations for future research, and a final conclusion. By exploring the experiences of nurses caring for patients with Friedreichʼs ataxia, this thesis aims to improve the quality of care provided to individuals living with this challenging condition.

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