Clean intermittent catheterization in Tanzania: Understanding the practices and perceptions of caregivers of children with spina bifida post-training Pubblico
Valleau, Christopher (Spring 2021)
Published
Abstract
Background: Continence management training programs to teach clean intermittent catheterization and other skills to caregivers of children with spina bifida were first implemented in Tanzania nearly two decades ago. These trainings are incredibly important as many of these children suffer from pediatric neurogenic bladder, a bladder dysfunction caused by nervous system damage, which can lead to skin breakdown from urine leakage, kidney failure, and early mortality. However, no formal evaluation of these trainings has been carried out in Tanzania, and the literature examining acceptability and efficacy in similar low-resource settings is limited.
Methods and Findings: We conducted a cross-sectional survey to collect data on the experiences of caregivers of children with spina bifida attending continence management trainings in Mwanza and Dar es Salaam, Tanzania, as well as data on implementation of learned practices post-training. A questionnaire was administered to forty-seven participants by phone. Exploratory analysis and descriptive statistics were carried out with the goals of describing caregivers’ experiences at trainings, describing continence management practices post-training, and identifying program successes and challenges. Identified successes included an early start to CIC for many children, positive outcomes in fecal continence management, relatively high adherence to CIC given the challenges faced, and highly motivated parents. Perhaps the biggest barrier to program success was the low uptake of intravesical oxybutynin as part of CIC practice (< 5%), likely due in part to a lack of hands-on training using this medicine. Other barriers included lack of follow-up, low rates of self-catheterization, lack of mobility support, and difficult economic conditions faced by families.
Conclusion: Continence management training programs were found to be acceptable and feasible in this setting. However, given that fewer than 5% of participants were found to use intravesical oxybutynin, a critical component of a proper CIC regimen, it is difficult to say that these trainings have been fully successful. That said, that nearly half of participants reported regularly catheterizing their children despite numerous barriers is promising. While the continence management training programs in Tanzania have limitations in their current form, numerous successes are present and major improvements are possible with reasonable changes.
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 12
Profile of Spina Bifida in Tanzania 12
Treatment for Spina Bifida and its Complications 15
CHAPTER 3: METHODS 19
Study Participants 19
Data Collection 19
Data Collection Tool 19
Methods of Data Collection 20
Data Entry and Analysis 21
Ethics Approval 22
CHAPTER 4: RESULTS 23
Household Characteristics 23
Characteristics of Children 24
Training Experiences 25
Continence Practice 26
Fecal Continence Management 26
Urinary Continence Management 26
Issues restocking continence management supplies 29
School 29
Care-seeking 30
CHAPTER 5: DISCUSSION 31
Recommendations for Future Programming 36
Strengths and Limitations 37
Implications and Conclusion 38
REFERENCES 40
APPENDICES 42
Appendix A: Questionnaire 42
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