A Comparison of the Quality of Life of Arab Mothers of Children with and without Chronic Disabilities

Aim. To compare the quality of life (QoL) of Arab mothers in Kuwait who had children with chronic disabilities and those whose children had no disabilities and provide recommendations for how occupational therapists can assist in enhancing the mothers’ QOL. Methods. The case group included 71 mothers of children with chronic disabilities and a control group of 86 mothers of children without disabilities. Mothers’ QoL was assessed using the Arabic WHOQOL-BREF questionnaire and the support systems of mothers of children with disabilities using a support questionnaire. Results. The QoL of mothers of children with disabilities was significantly lower than that of mothers of healthy children (p < .001) in all four domains of WHOQOL-BREF (physical health, psychological wellbeing, social relationships, and environment). Mothers of children with disabilities reported that they received most support from their nuclear family. There was a lack of formal support systems in place in Kuwait. Conclusion. Mothers of children with disabilities perceive their QoL as poor and they have limited support systems. Occupational therapists are encouraged to serve as a resource for families, sharing information including available services and community resources, and supporting mothers as competent caregivers.     

Family Impacts Among Children With Autism Spectrum Disorder: The Role of Health Care Quality

ObjectiveTo compare health care quality and family employment and financial impacts among children with special health care needs (CSHCN) with autism spectrum disorder (CSHCN + ASD), CSHCN with functional limitations (CSHCN + FL), and CSHCN lacking these conditions (other CSHCN); to test whether high health care quality was associated with reduced family impacts among CSHCN + ASD.MethodsData from the 2009–2010 National Survey of CSHCN were used to compare 3025 CSHCN + ASD, 6505 CSHCN + FL, and 28,296 other CSHCN. Weighted multivariate logistic regression analyses examined 6 age-relevant, federally defined health care quality indicators and 5 family financial and employment impact indicators. Two composite measures were additionally used: 1) receipt of care that met all age-relevant quality indicators; and 2) had ≥2 of the 5 adverse family impacts.ResultsAcross all health care quality indicators, CSHCN + ASD fared poorly, with only 7.4% meeting all age-relevant indicators. CSHCN + ASD had worse health care quality than other CSHCN, including CSHCN + FL. CSHCN + ASD also had high rates of adverse family impact, with over half experiencing ≥2 adverse impacts. Rates of adverse family impact were higher in CSHCN + ASD than other CSHCN, including CSHCN + FL. Among CSHCN + ASD, those whose health care that met federal quality standards were less likely to have multiple adverse family impacts than CSHCN + ASD whose health care did not meet federal quality standards.ConclusionsCSHCN + ASD are more prone to experience poor health care quality and family impacts than other CSHCN, even CSHCN + FL. Receipt of care meeting federal quality standards may potentially lessen adverse family impacts for CSHCN + ASD.     

Quality of Care for Children With Medical Complexity: An Analysis of Continuity of Care as a Potential Quality Indicator

Objective

To examine the relationship between continuity of care for children with medical complexity (CMC) and emergency department (ED) utilization, care coordination quality, and family effects related to care coordination.

Satisfaction With Care Coordination for Families of Children With Disabilities

Introduction

Children with disabilities have significant health care needs, and receipt of care coordinator services may reduce caregiver burdens. The present study assessed caregivers’ experience and satisfaction with care coordination.

Perceptions of Gastrostomy Buttons Among Caregivers of Children With Special Health Care Needs

Introduction

Children with special health care needs (CSHCN) have chronic conditions that generally are classified as developmental disabilities. Children with developmental disabilities are at high risk of malnutrition. Gastrostomy buttons are frequently used to provide enteral nutrition for children with developmental disabilities.

Constipation-Related Emergency Department Use,and Associated Office Visits and Payments Among Commercially Insured Children

Objective

Pediatric constipation is common, costly, and often managed in the Emergency Department (ED). The objectives of this study were to determine the frequency of constipation-related ED visits in a large commercially insured population, the frequency of an office visit in the month before and after these visits, demographic characteristics associated with these office visits, and the ED-associated payments.

Sleep Characteristics in Mothers of Children With Developmental Disabilities

Impaired sleep can contribute to conditions such as cardiometabolic disorders, depression, and decreased immune function. Mothers of children with developmental disabilities (DDs) may be at greater risk for impaired sleep due to the sleep problems of their children. This cross-sectional study described the self-reported sleep characteristics of mothers of children (ages 6-12) with DDs by using a sleep diary and the Pittsburgh Sleep Quality Index (PSQI) as quantitative and qualitative measures of sleep in these mothers. The Consensus Sleep Diary was modified to ascertain how the child's sleep and needs for care during the night impacted the mother's sleep. The results showed that mothers had short sleep duration (nearly 40% slept <7 hours per night), woke up an average of 2.2 times per night (most commonly due to caregiving needs of children), and had poor sleep quality (mean PSQI global score of 7.9 [SD=4.8]). The sleep problems of children with DDs may influence mothers’ sleep.     

Health-Related Quality of Life Outcomes of a Telehealth Care Coordination Intervention for Children With Medical Complexity: A Randomized Controlled Trial

The purpose of this study was to explore health-related quality of life (HRQL) and family impact in the context of an advanced practice registered nurse–delivered telehealth care coordination intervention for children with medical complexity (CMC). This was a secondary outcomes analysis of a randomized controlled trial with 163 families of CMC in an existing medical home. HRQL and family impact were measured using the PedsQL measurement model. Bivariate and analysis of covariance analyses were conducted to explore associations at baseline and the intervention effect over 2 years. Significant predictors of Year 2 child HRQL were baseline HRQL and the presence of both neurologic impairment and technology dependence. There was no significant intervention effect on child HRQL or family impact after 24 months. Care coordination interventions for CMC may need to incorporate family system interventions for optimal outcomes in a range of quality of life domains.     

Parents' Perception of Receiving Family-Centered Care for Their Children with Physical Disabilities: A Meta-Analysis

Aims: Understanding parent perceptions of family-centered care (FCC) is important to improve processes and outcomes of children's services. Objective: A systematic review and meta-analysis of research on the Measures of Processes of Care (MPOC-20) were performed to determine the extent parents of children with physical disabilities perceive they received FCC. Methods: A comprehensive literature search was conducted using four databases. A total of 129 studies were retrieved; 15 met the criteria for the synthesis. Meta-analysis involving 2,582 mothers and fathers of children with physical disabilities mainly cerebral palsy was conducted for the five scales of the MPOC-20. Results: Aggregated mean ratings varied from 5.0 to 5.5 for Providing Specific Information about the Child; Coordinated and Comprehensive Care; and Respectful and Supportive Care (relational behaviors) and Enabling and Partnership (participatory behaviors) indicating that, on average, parents rated FCC as having been provided to “a fairly great extent.” The aggregated mean rating was 4.1 for Providing General Information, indicating FCC was provided “to a moderate extent.” Conclusions: Service providers are encouraged to focus on child and family needs for general information. Research is needed to better understand parent perspectives of service provider participatory behaviors which are important for engaging families in intervention processes.     

Parental Experience of Home Adaptation for Children with Motor Disabilities

Home adaptation is essential in increasing independence of children with disabilities and reducing the burden of care for parents. Physical and occupational therapists involved in home adaptations are faced with various challenges in meeting the needs and expectations of parents. This study aimed at exploring the experience of parents throughout the home adaptation process. We conducted an exploratory qualitative study, whereby we interviewed a sample of 11 parents of children with motor disabilities, using focus groups and individual interviews. Dominant themes that emerged were financial and organizational constraints, child's independence/self-esteem, respect of temporal aspects, safety, respect for parent's roles, need for information, and appearance of the home. Parents wish physical and occupational therapists to take on roles that extend beyond provision of home adaptation, such as those of consultants and advocates.     

Are Preschool Children with Special Needs Being Accepted by Their Typically Developing Peers in Inclusive Child Care Programs

Thirty-one typically developing preschool children, who were enrolled in inclusive child care programs, reported their friendship preferences for classmates with and without special needs. Teachers rated friendship preferences for all children in their classrooms. Observers recorded the frequency of time that children with and without special eneds spent playing alone or cooperatively during 30 minutes of free play. The main purpose of this study was to assess preschool children's friendship preferences for classmates with and without special needs, using child and teacher versions of a frienship rating scale. A secondary purpose was to observe whether differences existed in the amount of friendship play, defined as cooperative interactions, between preschool children with and without special needs. Results indicated that children and teachers provided higher friendship ratings for typical peers than for classmates who had special needs. Typically developing children engaged in more cooperative play than children with special needs. These results were discussed and recommendations for practice and future research were provided.     

儿童学习障碍及其治疗

学习障碍（LD）是一组异质性综合征，多见于学龄期儿童，未经干预矫治者易发展为品行障碍或青少年违法。儿科学界对LD的诊疗介入成为必然，且对LD的治疗干预需结合教育心理学。故本文结合国内外LD研究现状，对LD研究沿革、发病原因、机制、诊断及预防治疗等方面作系统阐述，以飨国内读者。     

Health Care Utilization and Spending for Children With Mental Health Conditions in Medicaid

ObjectiveTo examine how characteristics vary between children with any mental health (MH) diagnosis who have typical spending and the highest spending; to identify independent predictors of highest spending; and to examine drivers of spending groups.MethodsThis retrospective analysis utilized 2016 Medicaid claims from 11 states and included 775,945 children ages 3 to 17 years with any MH diagnosis and at least 11 months of continuous coverage. We compared demographic characteristics and Medicaid expenditures based on total health care spending: the top 1% (highest-spending) and remaining 99% (typical-spending). We used chi-squared tests to compare the 2 groups and adjusted logistic regression to identify independent predictors of being in the top 1% highest-spending group.ResultsChildren with MH conditions accounted for 55% of Medicaid spending among 3- to 17-year olds. Patients in the highest-spending group were more likely to be older, have multiple MH conditions, and have complex chronic physical health conditions (P <.001). The highest-spending group had $164,003 per-member-per-year (PMPY) in total health care spending, compared to $6097 PMPY in the typical-spending group. Ambulatory MH services contributed the largest proportion (40%) of expenditures ($2455 PMPY) in the typical-spending group; general health hospitalizations contributed the largest proportion (36%) of expenditures ($58,363 PMPY) in the highest-spending group.ConclusionsAmong children with MH conditions, mental and physical health comorbidities were common and spending for general health care outpaced spending for MH care. Future research and quality initiatives should focus on integrating MH and physical health care services and investigate whether current spending on MH services supports high-quality MH care.     

The Financial Impact of a Hospital-Based Care Coordination Program for Children With Special Health Care Needs

Care coordination programs are important in caring for medically complex pediatric patients, particularly for children with special health care needs. This study is a retrospective financial analysis of a hospital-based care coordination program involving one procedural subgroup of children with special health care needs: those receiving pediatric tracheostomy. Hospital records were reviewed for patients who received a tracheostomy at a large Midwestern U.S. hospital from 1999 through 2015. The population was divided into two subgroups: patients who received a tracheostomy before the development of a care coordination program and patients who received a tracheostomy after enrollment in the care coordination program. Patient records were reviewed for length of stay, readmissions related to respiratory and tracheostomy management, and total hospital charges. Enrollment in a care coordination program for the pediatric tracheostomy patient resulted in a decrease in mean length of stay and reduced hospital charges and a slight increase in readmissions. Further analysis using larger sample sizes and multiple centers is necessary to determine whether such outcomes are the direct result of enrollment in a care coordination program.