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

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.