Qualitative evaluation of clean intermittent catheterization training programs for parents of children with spina bifida in Dar es Salaam, Tanzania Open Access
Layde, Molly (Spring 2021)
Abstract
Background: As neurosurgical outcomes for children with spina bifida improve in Tanzania and other low and middle income countries (LMICs), there is a need to better understand management of common childhood complications, particularly regarding continence and kidney function. Kidney disease is a leading killer of these children, but risks can be reduced with proper continence management and the use of clean intermittent catheterization. Continence management training programs have existed in Tanzania for two decades, but no formal evaluations of these programs have been conducted in this setting.
Methods and Findings: We conducted a qualitative study of 17 parents of children with spina bifida in Dar es Salaam, Tanzania to understand their experiences at continence management trainings and facilitators and barriers to success implementing CIC following the trainings. In-depth interviews were conducted with parents who had attended one or more continence management trainings. Participants were recruited from local support groups for parents of children with spina bifida. The analysis revealed strengths of the trainings, including teaching methods and the formation of peer support networks, and weaknesses, including myths and misinformation and critical missing components. A lack of systems, structural barriers, and socioeconomic challenges were the primary barriers to successful implementation post-training. Support networks, highly motivated parents, and program acceptance all facilitated success at implementation post-training.
Conclusion: Acknowledging the numerous barriers to successful program implementation in settings with limited resources, there are many notable successes. Many of the challenges identified are possible to overcome with relatively low cost and reasonable measures. With practical changes, the continence management training programs evaluated can improve their efficacy in changing the lives of children with spina bifida in Tanzania and similar settings. More research is needed after initial implementation of the primary recommendations to re-evaluate efficacy post-improvement.
Table of Contents
CHAPTER 1: INTRODUCTION 9
Introduction and Rationale 9
Problem Statement 9
Purpose Statement 10
Research Objectives 10
Significance Statement 10
CHAPTER 2: BACKGROUND 11
Neural Tube Defects 11
Prevention of NTDs in Tanzania 11
Early Detection and Management 13
Bladder and Kidney Implications 15
Clean Intermittent Catheterization in Tanzania 15
CHAPTER 3: METHODS 17
Study Population 17
Recruitment of Participants 17
Data Collection 18
Data Analysis 19
Ethical Considerations 19
CHAPTER 4: RESULTS 21
Experiences at Trainings 22
Positive Training Experiences 22
Negative Training Experiences 23
Barriers to Continence Management 26
Lack of Systems 26
Structural Barriers 27
Socioeconomic Factors 28
Facilitators to Success with Continence Management 29
Support Systems 29
Motivated Parents 30
Program Acceptance 32
CHAPTER 5: DISCUSSION 33
Public Health and Clinical Recommendations 36
Other Considerations 40
Strengths and Limitations 41
Implications 41
Conclusion 42
REFERENCES 45
APPENDIX 49
About this Master's Thesis
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