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.

Women with cerebral palsy: A qualitative study about their experiences with sexual and reproductive health education and services.

PURPOSE: To explore the recalled experiences of women with CP regarding sexual health education and services they received. METHODS: Semi-structured interviews and focus groups were conducted at four academic tertiary hospitals with 33 adult women with CP. Templates were used to ask about four key content domains: appointment planning (including planning for a gynecologic exam), accessibility of services, experiences with providers, and recommendations for improvement. Sessions were transcribed verbatim and analyzed to generate a coding dictionary. Blinded coding was carried out for each transcript, with duplicate coding used to confirm identified themes. Iterative analysis was used to identify and consolidate coding and key themes. RESULTS: Similar barriers were discussed at the four sites, including lack of accessible exam tables, hospital staff unfamiliar with physical disabilities, and assumptions that women with CP are not sexually active. Many described the sexual education they received as brief, omitted, or mistimed. Self-advocacy was crucial, and recommended strategies ranged from pre-gynecologic exam medication to visit checklists. CONCLUSION: Reproductive health education for young women with CP is frequently inadequate. Medical professionals lack relevant knowledge and awareness; medical facilities lack necessary infrastructure. Recommendations for improvements are made.

Puberty and menarche in young females with cerebral palsy and intellectual disability: a qualitative study of caregivers' experiences.

AIM: To explore experiences of parents of young females with cerebral palsy (CP) and intellectual disability at the onset of puberty. METHOD: This was a phenomenological qualitative study. We conducted phone interviews of parents of young females with CP and intellectual disability who had been seen in the CP center at a freestanding children's hospital within the prior 2 years. Inclusion criteria were English-speaking parents of young females who had combined diagnoses of CP and intellectual disability. Interviews were coded and analyzed by the research team facilitated by Dedoose software. RESULTS: Nine interviews were conducted with parents of daughters aged 14 to 24 years. All daughters used wheelchairs for mobility and augmentative technology for communication. Despite homogeneity in functional ability, there was marked variation in parental perception of the significance of puberty for their daughters. Families often learned about reproductive health from informal social networks. Although families acknowledged the need for sexual abuse screening, there was little consensus about how to do it, and most denied that their own daughter could ever be abused. INTERPRETATION: Parents of young females with CP and intellectual disability have diverse reproductive health beliefs that health care providers must explore in order to provide appropriate recommendations for management of puberty. WHAT THIS PAPER ADDS: Parents of young females with cerebral palsy (CP) and intellectual disability have diverse reproductive health beliefs. Approaches to menstrual management in this population must be individualized. Families discounted the likelihood of abuse, despite acknowledging their daughters' risk.

Perspectives on the use of a health surveillance system for Guatemalan youth: a stakeholder analysis.

In Guatemala, adolescent health indicators are collected using the Sistema Informático del Adolescente (SIA), a clinical survey developed by the Pan-American Health Organization. Recent analysis revealed significant gaps in data, limiting the ability of clinicians and policy makers to effectively address health disparities. Our objective was to explore adolescent health stakeholders' perceptions of the SIA. We conducted semi-structured interviews with 22 clinic personnel recruited from six adolescent health clinics throughout Guatemala. Stakeholders included multi-disciplinary providers and key database personnel. Interviews were conducted in Spanish, recorded and transcribed; a coding scheme was developed using a phenomenological approach, and Dedoose was used for analysis. Four major themes emerged: (1) Collecting baseline adolescent health data was useful for prevention, diagnosis and treatment of adolescent health issues. (2) The SIA was instrumental in streamlining clinical care and informing the psychosocial needs of patients. (3) The questionnaire was time-intensive, repetitive and often problematic for data input/extraction. (4) Condensing the survey and using a web-based version may improve the system for future use. Our findings show that despite the use of a standardized system, multiple barriers contribute to gaps in comprehensive data collection in Guatemala. Refining the system may enhance adolescent health surveillance and improve quality of care in this vulnerable population.

Characterization of Rare Variants in MC4R in African American and Latino Children With Severe Early-Onset Obesity.

CONTEXT: Mutations in melanocortin receptor (MC4R) are the most common cause of monogenic obesity in children of European ancestry, but little is known about their prevalence in children from the minority populations in the United States. OBJECTIVE: This study aims to identify the prevalence of MC4R mutations in children with severe early-onset obesity of African American or Latino ancestry. DESIGN AND SETTING: Participants were recruited from the weight management clinics at two hospitals and from the institutional biobank at a third hospital. Sequencing of the MC4R gene was performed by whole exome or Sanger sequencing. Functional testing was performed to establish the surface expression of the receptor and cAMP response to its cognate ligand α-melanocyte-stimulating hormone. PARTICIPANTS: Three hundred twelve children (1 to 18 years old, 50% girls) with body mass index (BMI) >120% of 95th percentile of Centers for Disease Control and Prevention 2000 growth charts at an age <6 years, with no known pathological cause of obesity, were enrolled. RESULTS: Eight rare MC4R mutations (2.6%) were identified in this study [R7S, F202L (n = 2), M215I, G252D, V253I, I269N, and F284I], three of which were not previously reported (G252D, F284I, and R7S). The pathogenicity of selected variants was confirmed by prior literature reports or functional testing. There was no significant difference in the BMI or height trajectories of children with or without MC4R mutations in this cohort. CONCLUSIONS: Although the prevalence of MC4R mutations in this cohort was similar to that reported for obese children of European ancestry, some of the variants were novel.

Comparing Current, Former, and Never Users of Natural Family Planning An Analysis of Demographic, Socioeconomic, and Attitudinal Variables.

This project examines how women who currently use natural family planning (NFP), those who formerly used NFP, and those who have never used NFP compare along demographic, socioeconomic, and attitudinal variables. Bivariate analyses of data from the National Survey of Family Growth 2006-2010 (N = 10,598 female respondents) suggest that current NFP users varied socioeconomically and demographically from former NFP users, but differences were more prominent between current NFP users and never NFP users. In many cases, there was little variation between former NFP users and never NFP users. Current NFP users were less likely to be black and more likely to be Hispanic or other race, married, Catholic or other religion, have a bachelor's degree, and earn higher income than the other two groups. Understanding how current NFP users differ from those who formerly used NFP and those who have never tried NFP provides important clues about which populations to target for promotional efforts.