Experiences and Challenges of Clean Intermittent Catheterization among Children with Spina Bifida and Their Caregivers in Uganda
1
1. Disability Research Group, Medical Research Council/ Uganda Virus Research Institute and London School of Hygiene and Tropical Medicine Uganda Research Unit, Wakiso, Uganda
2
2. International Centre for Evidence in Disability,, London School of Hygiene and Tropical Medicine, London, United Kingdom
Popul. Med. 2026;8(Supplement Supplement 1):A1290
ABSTRACT
BACKGROUND:
Clean Intermittent Catheterization (CIC) is a critical public health intervention for children with spina bifida, preventing urinary tract infections, kidney damage, and premature mortality while supporting continence and social participation (1, 2). In low-resource settings, however, effective implementation is constrained by health system weaknesses, limited access to supplies, and social barriers. Understanding these challenges is essential for strengthening disability-inclusive child health services, improving quality of life and reducing avoidable morbidity (3-5).
METHODS:
We conducted a mixed-methods study involving 101 participants: 20 children with spina bifida, 75 caregivers, and 6 healthcare providers across four regions of Uganda. Data collection included structured interviews and daily diaries capturing CIC practices, training experiences, access to supplies, caregiving burden, and follow-up care. Quantitative data were summarized descriptively; qualitative data were analyzed thematically.
RESULTS:
Despite widespread exposure to CIC training, significant gaps were identified. Variations in training content and absence of standardized guidelines resulted in inconsistent practices, affecting safety and caregiver confidence. Frequent shortages of catheters, lubricants, and essential medicines disrupted continuity of care, sometimes leading to skipped or improvised catheterization. Gaps in follow-up were evident, with many children lacking routine renal monitoring. Caregiving responsibilities were disproportionately borne by mothers, contributing to financial strain and psychosocial stress. Environmental and social barriers, including stigma, lack of privacy, and inadequate school sanitation, further limited adherence. Children and their families adopted adaptive strategies such as peer support networks and improvised solutions, reflecting resilience in the face of systemic constraints.
CONCLUSIONS:
Barriers to safe and sustained CIC use among children with spina bifida in Uganda reflect broader health system and social inequities. Strengthening standardized training, ensuring reliable supply chains, integrating routine follow-up into child health services, and addressing school and community-level barriers are critical public health priorities.
Clean Intermittent Catheterization (CIC) is a critical public health intervention for children with spina bifida, preventing urinary tract infections, kidney damage, and premature mortality while supporting continence and social participation (1, 2). In low-resource settings, however, effective implementation is constrained by health system weaknesses, limited access to supplies, and social barriers. Understanding these challenges is essential for strengthening disability-inclusive child health services, improving quality of life and reducing avoidable morbidity (3-5).
METHODS:
We conducted a mixed-methods study involving 101 participants: 20 children with spina bifida, 75 caregivers, and 6 healthcare providers across four regions of Uganda. Data collection included structured interviews and daily diaries capturing CIC practices, training experiences, access to supplies, caregiving burden, and follow-up care. Quantitative data were summarized descriptively; qualitative data were analyzed thematically.
RESULTS:
Despite widespread exposure to CIC training, significant gaps were identified. Variations in training content and absence of standardized guidelines resulted in inconsistent practices, affecting safety and caregiver confidence. Frequent shortages of catheters, lubricants, and essential medicines disrupted continuity of care, sometimes leading to skipped or improvised catheterization. Gaps in follow-up were evident, with many children lacking routine renal monitoring. Caregiving responsibilities were disproportionately borne by mothers, contributing to financial strain and psychosocial stress. Environmental and social barriers, including stigma, lack of privacy, and inadequate school sanitation, further limited adherence. Children and their families adopted adaptive strategies such as peer support networks and improvised solutions, reflecting resilience in the face of systemic constraints.
CONCLUSIONS:
Barriers to safe and sustained CIC use among children with spina bifida in Uganda reflect broader health system and social inequities. Strengthening standardized training, ensuring reliable supply chains, integrating routine follow-up into child health services, and addressing school and community-level barriers are critical public health priorities.
| eISSN: | 2654-1459 |
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