Clean intermittent catheterization in Tanzania: Understanding the practices and perceptions of caregivers of children with spina bifida post-training Open Access

Valleau, Christopher (Spring 2021)

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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


Introduction and Rationale   9

Problem Statement   9

Purpose Statement   10

Research Objectives   10

Significance Statement   10


Profile of Spina Bifida in Tanzania   12

Treatment for Spina Bifida and its Complications   15


Study Participants   19

Data Collection   19

Data Collection Tool   19

Methods of Data Collection   20

Data Entry and Analysis   21

Ethics Approval   22


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


Recommendations for Future Programming   36

Strengths and Limitations   37

Implications and Conclusion   38



Appendix A: Questionnaire   42

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