The art of introducing clean intermittent catheterization: How families respond and adapt: A qualitative study

Abstract

Introduction Since its inception >50 years ago, clean intermittent catheterization (CIC) has become ubiquitous in managing lower urinary tract dysfunction in children. Emphasis has been on its impact on daily life, but little on its implementation and adjustment in families. The aim of the current study was to discover how families learned to implement and manage their child's CIC needs by interviewing caregivers, adolescents, and young adults about their experiences. Interviews were designed to uncover facilitators and barriers to beginning CIC to initiate potential improvements in a multidisciplinary approach. Methods A semi‐structured interview guide was developed and piloted initially to 12 families for validation. Between August 2018 and October 2019, 40 families (52 interviews of caregivers and patients >12 years) were then interviewed with open‐ended questions interspersed with more specific ones to generate discussion. Transcripts were coded using Dedoose software to create a base list with emergent codes. Inductive and deductive methods were employed to generate themes. Consensus was reached during successive team meetings. Results Five major and several subthemes emerged regarding implementation of CIC by caregivers and patients learning CIC for the first time. Theme 1 Parental reaction to CIC: Caregivers described benefits of an adjustment period on learning their child's need for CIC. Prenatal information to caregivers of spina bifida children gave them time to mentally process the need for CIC. Theme 2 Ease of learning CIC: impact of age and gender: caregivers identified advantages of initiating CIC in infancy. Caregivers speculated CIC was physically easier in boys than girls due to meatus location. Developmentally ready children expressed a desire for independence and privacy as they learned to initiate CIC. Theme 3 The impact of additional caregiver support in learning and performing CIC: presence of multiple caregivers optimized learning and implementation of CIC. Having secondary caregivers available provided peace of mind and more flexibility in maintaining reliable CIC care. Patients learning CIC found it helpful to have a parent present at the teaching session. Occasionally, female caregivers reported feelings of anger and frustration when male caregivers were reluctant to be involved in catheterization, irrespective of their child's gender. Theme 4 Satisfaction with healthcare team's approach: The healthcare team's responsiveness to their learning needs affected how they mastered CIC. The healthcare team's teaching and reassurance helped build caregiver confidence. Developmentally appropriate children were able to learn self‐catheterization when supported by the healthcare team. Patients learning self‐CIC articulated having a supportive healthcare team was helpful with implementation. Theme 5 Effect of CIC on employment status relative to job changes, insurance, and daycare: implementing and performing CIC presented a spectrum of issues related to employment. Educating employers reg...

Facilitators and challenges to transitioning to self‐catheterization: Patient and caregiver perspectives

“…Initially, an interview guide was developed with the expertise of a multidisciplinary team within a pediatric urology department at a tertiary care center. 6 The interview guide was piloted to 12 families on CIC followed in our department. Their feedback was incorporated into a codesigned questionnaire.…”

“…This research is part of a larger qualitative study that utilized a phenomenological approach to gather information from caregivers and children >12 years who perform CIC through semistructured interviews (Hospital IRB #P00023942). Initially, an interview guide was developed with the expertise of a multidisciplinary team within a pediatric urology department at a tertiary care center 6 . The interview guide was piloted to 12 families on CIC followed in our department.…”

“…As described in previous investigations as part of this larger qualitative study, families and patients included in the interview process were not randomly selected. 6 Patients and families who were especially eager to participate may have had an inherently different experience than those who did not wish to or were not approached to become involved. In some cases, interviews took place several years after the patient learned self-CIC, which might have introduced recall bias.…”

“…4,5 The authors believe age alone should not be predictive of when a child is ready to learn self-CIC and that a multidisciplinary team assessment is needed to determine readiness (to learn this skill) as they consider the following pertinent factors: emotional and cognitive development, readiness to learn, physical capability to perform CIC, psychological history and coping skills, family culture/environment, and caregiver support. 2,6,7 Research specifically assessing how to support children as they advance through the transition process of independently performing CIC is limited, though there is some evidence in patients with congenital urologic conditions and other pediatric medical conditions. 8,9 The aim of the current study is to understand the facilitators and challenges patients experience during their transition from caregiver-led CIC to patient-led self-CIC by gathering information through qualitative interviews of caregivers, adolescents, and young adults about their experiences.…”

“…Some reports have shown children as young as four successfully transitioning to self‐CIC with caregiver support 4,5 . The authors believe age alone should not be predictive of when a child is ready to learn self‐CIC and that a multidisciplinary team assessment is needed to determine readiness (to learn this skill) as they consider the following pertinent factors: emotional and cognitive development, readiness to learn, physical capability to perform CIC, psychological history and coping skills, family culture/environment, and caregiver support 2,6,7 …”