Background: 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). Failure to follow the prescribed CIC regimen results in urinary tract infections, incontinence, and renal insufficiency. Adherence to CIC is suboptimal, with reported non-adherence rates of 18-66%. Despite the efficacy of CIC, the research on CIC adherence is not well defined in the literature and even less so for caregivers of children on CIC protocols. The purpose of this study is to describe the rate of caregiver CIC adherence levels in children with SD and SCI, explore the correlation between caregiver determinants to CIC and adherence levels to the CIC protocol in children with SD and SCI, and determine how personal experiences with CIC influence caregivers' adherence behaviors. Methods: A cross-sectional, correlational, convergent mixed methods study design in which qualitative and quantitative data were simultaneously collected to study the level of adherence and the relationship of caregiver determinants to CIC in children with SD and SCI and adherence to the CIC protocol. Stratified sampling was used to identify adult caregivers who can read and write English or Spanish of a child diagnosed with SD and SCI currently prescribed CIC by a urology provider. 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: 60 adult caregivers of children with SD and SCI completed the study. 21 of 60 (35%) of the participants had high CIC adherence, 16/60 (27%) participants had average CIC adherence, and 23/60 (38%) had low CIC adherence. There was no association between CIC-cgQ composite score and low, average, and high adherence levels, rs = .154, p = 0.27, 95% CI [-0.13, 0.41]. A strong, negative correlation was found between the CIC discreetness determinants and low and high adherence, rrrb -0.45; p = 0.01, 95% CI [-0.66, -0.16]. The Mann-Whitney U test indicated a significant difference in the discreetness domain for the caregivers across the low, average, and high adherence groups (H(2) = 8.23, p = 0.02). Post-hoc comparisons using Dunn’s test indicated that CIC discreetness scores were observed to be significantly different from those of the low adherence group than those of the high adherence group (p = 0.01). The semi-structured interviews and observations yielded three prominent themes: CIC treatment knowledge, support, and community resources.Conclusion: Discreetness was revealed as the caregiver CIC determinant that was significantly associated with CIC adherence, which was also supported by caregiver experiences of challenges surrounding the privacy of catheterizing their children. Furthermore, explaining the differences noted in discreetness determinants between the high and low-adherence groups. The findings provide new insight into this vulnerable population that could impact the future of research, practice, and policy.
