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Introduction

Spinal Muscular Atrophy (SMA) is a rare genetic neuromuscular disorder that affects the motor neurons in the spinal cord, resulting in muscle weakness and atrophy. Patients with SMA require specialized care to manage their symptoms and enhance their quality of life. Nurses play a crucial role in providing care to patients with SMA, yet little is known about their experiences in this specific patient population. This thesis aims to explore the experiences of nurses providing care to patients with SMA, shedding light on the challenges they face, the strategies they employ, and the impact of their care on patient outcomes.

Table of Contents

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

Chapter 2: Literature Review
2.1 Overview of Spinal Muscular Atrophy
2.2 Nursing Care for Patients with SMA
2.3 Experiences of Nurses in Providing Care to SMA Patients
2.4 Challenges Faced by Nurses in Caring for SMA Patients
2.5 Strategies Employed by Nurses in Caring for SMA Patients
2.6 Impact of Nursing Care on Patient Outcomes
2.7 Best Practices in Nursing Care for SMA Patients
2.8 Gaps in the Literature
2.9 Theoretical Framework
2.10 Conceptual Framework

Chapter 3: Research Methodology
3.1 Research Design
3.2 Participants
3.3 Data Collection Methods
3.4 Data Analysis
3.5 Ethical Considerations
3.6 Pilot Study
3.7 Validity and Reliability
3.8 Limitations of Methodology

Chapter 4: Discussion of Findings
4.1 Demographic Characteristics of Participants
4.2 Experiences of Nurses in Providing Care to SMA Patients
4.3 Challenges Faced by Nurses in Caring for SMA Patients
4.4 Strategies Employed by Nurses in Caring for SMA Patients
4.5 Impact of Nursing Care on Patient Outcomes
4.6 Comparison with Existing Literature
4.7 Implications for Practice
4.8 Recommendations for Future Research

Chapter 5: Conclusion and Summary
5.1 Summary of Findings
5.2 Implications for Nursing Practice
5.3 Recommendations for Policy and Education
5.4 Limitations of the Study
5.5 Concluding Remarks

Thesis Overview

Patients with Spinal Muscular Atrophy (SMA) require comprehensive care to manage their symptoms and optimize their quality of life. Nurses play a critical role in providing this care, yet their experiences in caring for SMA patients have not been extensively studied. This thesis aims to explore the experiences of nurses providing care to patients with SMA, shedding light on the challenges they face, the strategies they employ, and the impact of their care on patient outcomes. The study will involve a thorough review of the literature on SMA and nursing care, followed by qualitative research with nurses who care for SMA patients. The findings of this study will contribute to the body of knowledge on nursing care for rare genetic disorders and provide insights for improving the care provided to patients with SMA.

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