Clean intermittent catheterization determinants and caregiver adherence in pediatric patients with spinal dysraphism and spinal cord injury: A mixed methods study.
Document Type
Article
Publication Date
2-2026
Identifier
DOI: 10.1016/j.jpurol.2025.12.007
Abstract
INTRODUCTION: Clean intermittent catheterization (CIC) is the standard of care for treating neurogenic lower urinary tract dysfunction (NLUTD), the most common bladder dysfunction in children diagnosed with spinal dysraphism (SD) and spinal cord injury (SCI). However, CIC protocols are complex, imposing significant psychological, emotional, and financial burdens on caregivers.
PURPOSE: The study aimed to describe the rate of CIC adherence levels in children with SD and SCI, examine the correlation between caregiver determinants of CIC and adherence levels to the CIC protocol, and explore how personal experiences with CIC influence caregivers' adherence behaviors.
METHODS: Stratified sampling was used to identify adult caregivers of a child diagnosed with SD and SCI. Clean Intermittent Catheterization Caregiver Questionnaire (CIC-cgQ) was used to measure CIC determinants. The Intermittent Catheterization Adherence Scale (ICAS) measured caregiver adherence levels to CIC protocol. Caregivers were interviewed to ascertain perceptions of determinants.
RESULTS: Sixty adult caregivers of children diagnosed with SD and SCI participated in the study. Adherence levels revealed that 21 (35 %) participants exhibited high CIC adherence, 16 (27 %) demonstrated average adherence, and 23 (38 %) displayed low adherence. A statistically significant positive association was observed between the Clean Intermittent Catheterization-Caregiver Questionnaire composite score and adherence levels (rs =0.604, p < 0.01, 95 % CI [0.39, 0.75]), indicating that higher determinant scores correlated with increased adherence. Furthermore, positive associations were identified between adherence levels and specific determinants: ease of use (rs =0.364, p < 0.01, 95 % CI [0.11, 0.57]), convenience (rs = 0.305, p < 0.01, 95 % CI [0.05, 0.53]), discreetness (rs = 0.374, p < 0.01, 95 % CI [0.12, 0.58]), and psychological well-being (rs = 0.643, p < 0.01, 95 % CI [0.48, 0.78]). The qualitative interviews highlighted three key themes: CIC treatment knowledge, support, and community resources.
DISCUSSION: This study identified a 65 % CIC non-adherence rate among caregivers of children with SD and SCI. It also found an association between caregiver CIC determinants and adherence levels, integrated with participants' experiences. Higher CIC composite scores correlated with higher adherence levels. Discreetness and psychological well-being were significant caregiver CIC determinants associated with adherence, further supported by caregiver experiences. Study limitations include the single clinical setting, which may limit generalizability, and potential self-report bias.
CONCLUSION: The findings offer new insights into this vulnerable population, potentially impacting the future of research, practice, and policy, particularly regarding CIC determinants of discreetness and psychological well-being.
Journal Title
J Pediatr Urol
Volume
22
Issue
1
First Page
105691
Last Page
105691
MeSH Keywords
Humans; Spinal Cord Injuries; Caregivers; Male; Female; Intermittent Urethral Catheterization; Spinal Dysraphism; Urinary Bladder, Neurogenic; Child; Adult; Adolescent; Surveys and Questionnaires; Middle Aged; Child, Preschool
PubMed ID
41468786
Keywords
Adherence; Caregivers; Intermittent catheterization; Neurogenic lower urinary tract dysfunction; Patients
Recommended Citation
Wickham A, Russell CL, Chesnut SR, Chrisman M, McElroy SF, Gatti JM. Clean intermittent catheterization determinants and caregiver adherence in pediatric patients with spinal dysraphism and spinal cord injury: A mixed methods study. J Pediatr Urol. 2026;22(1):105691. doi:10.1016/j.jpurol.2025.12.007
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