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

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 regarding CIC facilitated a caregiver's ability to both remain at work and administer to their child. Caregivers underscored the importance of adequate insurance when considering employment choices. Concerns about daycare availability affected caregivers' work schedules. CONCLUSIONS: It is anticipated this information will aid healthcare personnel to more effectively teach and initiate CIC in families, and in individuals learning for the first time. The findings should serve as the basis for conducting future patient satisfaction studies, which would determine the effectiveness and reproducibility of these approaches.

Interdisciplinary Collaboration in a Pediatric Urology Outpatient Clinic at a Tertiary Children's Hospital: A Case Series.

OBJECTIVE: To increase awareness and understanding of how psychology, social work, and child life specialties can integrate into interdisciplinary pediatric urology care. To advocate for increased access to psychology, social work, and child life specialty care in other pediatric urology care centers. METHODS: Authors participated in a series of discussion groups to develop the aim and goals for this study and identify patients that would best exemplify the interdisciplinary nature of care provided. Initially, fifteen patients were selected; further focused discussion groups supported the selection of 6 patients that are described in this study. RESULTS: Authors present a series of 6 case studies aimed to illustrate the interdisciplinary support available to pediatric urology patients in 1 tertiary care center. Cases review a range of presenting issues, including a patient learning clean intermittent catheterization (CIC), a patient resistant to surgical intervention, patients with bowel and bladder dysfunction, a patient undergoing voiding cystourethrogram (VCUG), and a patient with urinary frequency, all of whom presented with a range of psychosocial needs that impacted their urological treatment. CONCLUSION: Access to a psychosocial support staff can improve adherence to medical treatment by reducing barriers to care and promoting behavioral change, support patients in coping and reducing post-traumatic stress following surgery and invasive procedures, improve communication between patients, families, and medical staff, and treat psychological issues that contribute to urinary symptoms. Additional literature exploring how these interventions reduce costs associated with medical intervention, hospitalizations, outpatient visits, emergency visits, and sedation for procedures would be beneficial.