The impact of clean intermittent catheterization on students and families in the school environment.

INTRODUCTION: Clean intermittent catheterization (CIC) is often used for bladder emptying in children with lower urinary tract dysfunction. Until recently, the emphasis in assessing the effects of CIC has been on preserving kidney function, reducing urinary tract infection, and achieving urinary continence. Few studies have investigated the impact of CIC on students and families in a school setting. This study sought to examine what students and caregivers experienced when CIC was required during the school day and how schools adjusted to a student needing to perform it. MATERIALS AND METHODS: A phenomenological approach utilizing semistructured interviews was performed to understand the impact of CIC on students. Purposeful sampling identified eligible families. A guide was developed from expert opinion validated by a pilot sample with feedback collated into a family/provider codesigned questionnaire. Interviews emphasized the impact and challenges students faced at school. Transcripts were coded using Dedoose software with emerging themes identified and a code book was created for closed coding that led to thematic analysis. RESULTS: A total of 40 families (52 caregivers and children > 12 years) were interviewed. Emergent themes included: Caregivers and students felt (1) school personnel were not always aware of nor prepared regarding the implications of CIC; (2) school bathrooms were often less than ideal (e.g., location, size, cleanliness, privacy, and availability); and (3) student participation in extracurricular activities was challenging. CONCLUSIONS: This study identifies potential areas of intervention in meeting the needs of students who require CIC and the importance of having collaborative efforts of caregivers, health care providers, and school personnel in addressing and meeting CIC needs. Care coordination that involves consistent communication and careful planning between health care teams, school personnel, students, and caregivers can optimize a student's educational experience.

Hispanic Caregivers' experience of pediatric type 1 diabetes: A qualitative study.

OBJECTIVE: It is widely recognized that Type 1 Diabetes (T1D) outcomes are worse among Hispanic children; however, little is published about the perspectives of these patients and their caregivers. Our intent was to characterize the lived experience of Hispanic caregivers of children with T1D, focusing on the role of language and culture and their perspectives on current medical care and alternative care models. We studied Hispanic caregivers of patients (age 2-17 years) with T1D of greater than 6 months' duration. RESEARCH DESIGN AND METHODS: We completed semi-structured interviews and focus-groups of a purposive sample of 20 members of our population of interest. We developed a codebook and completed multidisciplinary consensus coding, then conducted iterative thematic analysis using qualitative software and discussion to generate themes. RESULTS: We gathered data from 20 Hispanic caregivers of T1D patients (11.37 ± 3.00 years old, 4.80 ± 2.84 years since diagnosis). 85% of caregivers were female, 80% preferred Spanish, and 15% were college-educated. Our analysis yielded 4 themes across the participants: (1) Culturally-based nutrition challenges, (2) Social isolation and lack of support for T1D care, (3) Hesitancy to fully embrace diabetes technology, and (4) Deferential views of care experience and providers. Overarching all of these themes was support for Hispanic group-based models of care tailored to address these concerns. CONCLUSIONS: The unique concerns among Hispanic caregivers of children with T1D suggest the importance of culturally tailored interventions to improve care. With successful implementation, such interventions could diminish widening disparities in healthcare outcomes.

Validation of the RAISE (Readiness Assessment of Independence for Specialty Encounters) Tool: Provider-Based Transition Evaluation.

PURPOSE: The aim of this study was to establish content validity of a developmentally based assessment tool of readiness for medical independence for specialty providers. DESIGN AND METHODS: The validation process used expert panel evaluation to assess the items believed to measure the desired content in the nine age-based scales within the RAISE (Readiness Assessment of Independence for Specialty Encounters) tool. Experts in child development and transition rated items on relevance, clarity and developmental appropriateness via electronic survey. Statistical analyses included calculation of interrater agreement (IRA), content validity indices (CVIs), and factorial validity indices (FVI). RESULTS: A total of 135 items were rated by 36 experts. Mean I-CVIs for 123 items across nine developmental scales met criteria for retention, ranging from 0.76 (threshold) to 1.00 (excellent). Mean I-CVIs for all 25 items across the five psychosocial stressor scales met criteria for retention, ranging from 0.92 to 1.00 (excellent). CONCLUSIONS: Findings from the current content validation study suggest that items on the revised RAISE tool are relevant, clear, and developmentally-appropriate as rated by experts in the fields of child development and transition. The tool, consisting of age based scales (ages birth-2, 3-4, 5-6, 7-8, 9-11, 12-13, 14-15, 16-17, 18-21), is shown to have content validity of the retained items meeting criteria. PRACTICE IMPLICATIONS: With content validity of the RAISE tool established by experts, this developmentally based assessment tool can be integrated into practice to assist providers in educating patients around skills of medical independence which could improve transition outcomes.