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)

Permanent URL: https://etd.library.emory.edu/concern/etds/0z708x645?locale=en


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


Introduction and Rationale   9

Problem Statement   9

Purpose Statement    10

Research Objectives  10

Significance Statement          10


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


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


Public Health and Clinical Recommendations           36

Other Considerations 40

Strengths and Limitations      41

Implications   41

Conclusion     42


APPENDIX      49

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