Introduction: Irrespective of etiology, clean intermittent catheterization (CIC) is well-accepted for the management of bladder dysfunction in children; it helps to preserve kidney function & aids in achieving continence. Despite emphasis on CIC techniques, there is limited research on how families respond & adapt. The objective of this study was to explore families’ lived experiences when beginning CIC & to determine what optimized or hindered this process.
Methods: A phenomenological approach using semi-structured interviews was conducted with patients & families between Aug 2018 & Oct 2019. Interview questions were validated for acceptability with a pilot sample. Purposive sampling identified eligible patients with bladder dysfunction on CIC. Interviews were grouped by patient age: caregivers of children <12 years (Group 1), patients 12-18 years & their caregivers, interviewed separately (Group 2), & patients >18 years (Group 3). Reasons for CIC (neurogenic, anatomic, functional voiding disorders) were recorded for all. Interview questions focused on initiation of CIC, specifically which aspects of training or education acted as facilitators or barriers to implementation. Two coders reviewed transcripts independently with explicit coding and met to resolve differences between them. Emerging themes were identified to ascertain convergence, divergence, or variation in response. This allowed creation of a code book used for closed coding. Dedoose (a web-based qualitative coding program) was used to create code reports & allow for thematic analysis.
Results: 52 interviews were conducted: Group 1 (14 families, 14 interviews), Group 2 (10 families, 20 interviews), & Group 3 (16 families, 18 interviews including 2 parents interviewed separately). From these interviews, 6 themes emerged. Caregivers believed that learning & implementing CIC was easier when: (1) the child was young & a male, (2) information about CIC as a possibility was provided well in advance of formal teaching, (3) there was an adjustment period before starting, (4) all potential caregivers were present at teaching sessions, (5) the healthcare team offered guidance to balance employment obligations with CIC requirements, & (6) the healthcare team was sensitive, engaged, & accessible during its initiation.
Conclusions: Healthcare providers should seriously consider engaging patients & caregivers in these strategies when introducing CIC as families would benefit from a well-structured educational plan & guidance prior to & following its implementation.