Clean intermittent catheterization determinants and caregiver adherence in pediatric patients with spinal dysraphism and spinal cord injury: a mixed methods study

Abstract

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. This study’s purpose was to describe the rate of caregiver CIC adherence levels in children with SD and SCI, explore associations 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 was used to study 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 English- or Spanish-speaking adult caregivers of a child diagnosed with SD and SCI currently prescribed CIC by a urology provider. The 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 (n=10) were interviewed to ascertain perceptions of determinants. Results: Sixty adult caregivers of children with SD and SCI completed the study. Twenty-one (35%) had high CIC adherence, 16 (27%) had average CIC adherence, and 23 (38%) had low CIC adherence. There was a positive association between CIC-cgQ composite score and low, average, and high adherence levels, rₛ = .604, p < 0.01, 95% CI [0.39, 0.75]. A positive correlation was found between the CIC discreetness (rₛ = .374, p <0.01, 95% CI [0.12, 0.58]) and psychological well-being (rₛ = .643, p <0.01, 95% CI [0.48, 0.78]) determinants and adherence level. Kruskal-Wallis tests indicated a significant difference in the total CIC composite score (H(2) = 13.14, p < 0.01), including the discreetness (H(2) = 7.65, p < 0.01) and psychological well-being (H(2) = 15.15, p = < 0.01) domains for the caregivers across the low, average, and high adherence groups. Semi-structured interviews and observations yielded three prominent themes: CIC treatment knowledge, support, and community resources. Conclusion: Higher CIC composite scores corresponded to higher adherence levels. Discreetness and psychological well-being were revealed as the caregiver CIC determinants significantly associated with CIC adherence, which was also supported by caregiver experiences.