Psychosocial functioning in parents of mps iii patients

 

Table Of Contents


Chapter ONE

INTRODUCTION

  • 1.1Introduction
  • 1.2Background of Study
  • 1.3Problem Statement
  • 1.4Objective of Study
  • 1.5Limitation of Study
  • 1.6Scope of Study
  • 1.7Significance of Study
  • 1.8Structure of the Research
  • 1.9Definition of Terms

Chapter TWO

LITERATURE REVIEW

  • 2.1Overview of Literature Review
  • 2.2Theoretical Framework
  • 2.3Historical Perspective
  • 2.4Empirical Studies
  • 2.5Conceptual Framework
  • 2.6Key Concepts and Definitions
  • 2.7Current Research Trends
  • 2.8Critical Analysis of Existing Literature
  • 2.9Research Gaps
  • 2.10Summary of Literature Review

Chapter THREE

RESEARCH METHODOLOGY

  • 3.1Research Methodology Overview
  • 3.2Research Design
  • 3.3Sampling Techniques
  • 3.4Data Collection Methods
  • 3.5Data Analysis Procedures
  • 3.6Research Ethics
  • 3.7Reliability and Validity
  • 3.8Limitations of Methodology

Chapter FOUR

DATA PRESENTATION AND ANALYSIS

  • 4.1Overview of Findings
  • 4.2Demographic Analysis
  • 4.3Quantitative Results
  • 4.4Qualitative Analysis
  • 4.5Comparative Analysis
  • 4.6Interpretation of Findings
  • 4.7Discussion of Results
  • 4.8Implications of Findings

Chapter FIVE

SUMMARY, CONCLUSION AND RECOMMENDATIONS

  • 5.1Conclusion and Summary
  • 5.2Summary of Findings
  • 5.3Contributions to Knowledge
  • 5.4Recommendations for Future Research
  • 5.5Practical Implications

Project Abstract

<p> </p><p><em>Background</em> Mucopolysaccharidosis type III (MPS III or Sanfilippo syndrome) is a lysosomal storage disease resulting in progressive neurocognitive decline during childhood and early demise. Its diagnosis may have a great impact on parents, potentially leading to psychosocial problems such as anxiety, depression, parental distress, and posttraumatic stress.</p><p><em>Methods</em> Twenty-six mothers and 19 fathers of 34 Dutch MPS III patients completed the “Hospital Anxiety and Depression Scale” (HADS), the “Distress Thermometer for Parents” (DT-P), and the “Self-Rating Scale for Posttraumatic Stress Disorders” (SRS-PTSD). Independent-sample T-tests and chi-square tests were used to assess differences between parents of MPS III patients and reference groups regarding anxiety and depression (HADS), distress (DT-P), and posttraumatic stress (SRS-PTSD).</p><p><em>Results</em> Mothers met the criteria for clinically relevant anxiety (50%) and depression (34.6%) more frequently compared to reference mothers (<em>p</em>&nbsp;= 0.001). Fathers more often met the criteria for clinically relevant depression (36.8%) compared to reference fathers (<em>p</em>&nbsp;= 0.022). Clinically relevant distress was highly prevalent in mothers (84.6%) and fathers (68.4%) of MPS III patients compared to reference parents (<em>p</em>&nbsp;&lt; 0.01). Finally, the prevalence of PTSD was strikingly higher in both mothers (26.9%) and fathers (15%) than reported in the general Dutch population (respectively, <em>p</em>&nbsp;&lt; 0.001 and <em>p</em>&nbsp;&lt; 0.05).</p><p><em>Conclusions</em> We report a clinically relevant impact of parenting an MPS III patient on psychosocial functioning, which is demonstrated by high levels of anxiety, depression, distress, and a remarkably high prevalence of PTSD. Structural monitoring of the psychosocial functioning of MPS III parents is therefore essential and may be beneficial for the whole family.</p> <br><p></p>

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