One Year Follow-up of Outcomes from the Randomized Clinical Trial of the Building on Family Strengths Program.

Objectives Test the 12-month efficacy of an inclusive non-diagnosis-specific, parent education program with seven in-person sessions. Methods Parents of 110 children, 2-11 years old, with a variety of special health care conditions, were recruited to participate in a randomized clinical trial. At twelve months data from 104 parents were available for longitudinal analysis.

Relationship between sleep disturbance and functional outcomes in daily life habits of children with Down syndrome.

Objectives: The goal of this study was to describe sleep patterns and accomplishment of daily life habits in children with Down syndrome (DS) and to investigate the relationship between subjective indicators of sleep disturbance with functional outcomes in daily life.

Design: Cross-sectional study with an Internet sample.

Setting: Online survey filled out at home.

Feasibility of using actigraphy and motivational-based interviewing to improve sleep among school-age children and their parents.

Inadequate sleep occurs in 25% of our nation's children; poor sleep is associated with physical, cognitive, and social consequences. Developing good sleep hygiene in middle childhood is important, because habits typically extend to adolescence and adulthood; yet, there has been little research on sleep interventions for school-age children. The purpose of this study was to determine the feasibility of a developmentally tailored, motivation-based intervention (MBI) focused on improving sleep behaviors in school-age children aged 8-11.

A randomized clinical trial of the building on family strengths program: an education program for parents of children with chronic health conditions.

To test the 6-month efficacy of an inclusive non-diagnosis-specific, 7-session parent education curriculum on five pre-specified outcomes. A randomized clinical trial with 100 parents having children 2-11 years with a variety of chronic conditions was conducted. The 7-session curriculum, Building on Family Strengths (BFS), was created by an interdisciplinary pediatric team as a derivative of a successful adult chronic disease self-Management program distributed by Stanford University Patient and Education Research Center.

School nurses can address existing gaps in school-age sleep research.

Sleep has been linked to a host of physical, behavioral, and emotional outcomes, and research has documented that youth across the globe are experiencing inadequate sleep. Despite this knowledge, however, very little research has been conducted on school-age children; much of the extant research has focused on infants, toddlers, preschoolers, adolescents, and adults. School-age children exhibit increasing independence around health-related behaviors, which provide health professionals the opportunity to educate and promote healthy sleep behaviors.

Daytime physical activity levels in school-age children with and without asthma.

Background: Physical activity (PA) is a significant predictor of health outcomes in children with and without chronic conditions. Few researchers have used actigraphy as an objective measure of PA during the child's normal daily routines, and the findings have been inconsistent. It is unclear if asthma can contribute to low PA levels.

Sleep measurement and monitoring in children with Down syndrome: a review of the literature, 1960-2010.

Children with Down syndrome (DS) are at risk for sleep disturbances due to the anatomical features of the syndrome. Over the past 50 years research studies have measured sleep in children with DS to characterize sleep architecture and its relation to developmental delay. In the 1980s sleep disordered breathing (SDB) was recognized as a major cause of sleep disturbance in DS.

Polysomnography and actigraphy concordance in juvenile idiopathic arthritis, asthma and healthy children.

The aims of this study were to evaluate sensitivity, specificity and accuracy with an epoch-by-epoch comparison of polysomnography (PSG) and actigraphy with activity counts scored at low, medium and high thresholds, and to compare PSG-derived total sleep time (TST), sleep efficiency (SE) and wake after sleep onset (WASO) to the same variables derived from actigraphy at low, medium and high thresholds in 9- to 11-year-old children with juvenile idiopathic arthritis (JIA), asthma and healthy control children. One night of PSG and actigraphy were recorded. Pairwise group comparisons for sensitivity showed significant differences at the low [Tukey's honest significant difference (HSD) P < 0.

Managing childhood chronic illness: parent perspectives and implications for parent-provider relationships.

When children have special health care needs, parents assume the roles of care coordinator, medical expert, and systems advocate as well as their typical parenting roles. They face many challenges in managing their child's chronic condition in the context of everyday life. Health care providers are uniquely positioned to assist parents in meeting those challenges and to promote parent competency and confidence in their child's care.

Parent-child agreement in report of nighttime respiratory symptoms and sleep disruptions and quality.

Introduction: Asthma control requires assessment of nighttime symptoms and sleep disruption. Cognitive and emotional development enables most school-aged children to report nocturnal problems, but providers often rely only on parental report, potentially limiting the comprehensiveness of their assessments and their ability to support the child's emerging efforts at shared management of their illness. This study investigated parent-child concordance in report of nighttime respiratory symptoms, sleep disruption, and quality of sleep in a sample of 9- to 11-year-old children with asthma.

Measuring parent-child shared management of chronic illness.

Unlabelled: Over time, most children with special health needs must become partners in their disorder management. Because most care of chronic conditions takes place in the home, parents assume significant responsibility in starting and supporting the child's role in parent-child shared management over time. This article describes findings from analysis of one attempt to measure this important construct.

Parent and community participation in program design.

Parents of children with chronic illnesses face many challenges not faced by other parents. A family-centered parent support and education program, Building on Family Strengths (BFS), was designed to help parents meet these challenges by gaining new skills and learning new ways to support their children. BFS researchers involved potential participant families in the refinement of the BFS curriculum to make it truly family centered.

Health care utilization by children with asthma.

Introduction: We examined how differences in health service utilization among children with asthma are associated with race/ethnicity, socioeconomic status (family income, mother's education), and health insurance coverage.

Methods: We analyzed Medical Expenditure Panel Survey data from 1996 through 2000 (982 children younger than 18 years with asthma). We calculated percentages and mean distributions, odds ratios, and incidence rate ratios.

Parents of children with special health care needs who have better coping skills have fewer depressive symptoms.

Objectives: Describe and quantify coping skills and prevalence of depressive symptoms in parents of children with special health care needs (CSHCN). Describe the association of coping skills with parental depressive symptoms, severity of child's condition and family demographic characteristics.

Methods: A baseline questionnaire was administered to parents of CSHCN 2-11 years old.

Nighttime sleep and daytime nap patterns in school age children with and without asthma.

Objective: This research examines subjective and objective report of naps and nighttime sleep in 9- to 11-year-old children with and without asthma.

Methods: This between subjects study collected prospective self-report diary and objective actigraphy measures of sleep from 27 children with and 27 without asthma during a 7-day/6-night at-home monitoring period.

Results: Thirty-two percent of participants reported daytime naps.

Does your child have asthma? Filled prescriptions and household report of child asthma.

Introduction: Surveys are central for information on asthma prevalence. Recently, the validity of parental reports of pediatric asthma has been questioned. Confidence is examined in the report of asthma for children, obtained in a survey from the adult household member most knowledgeable about household health care (MKA).

Measuring asthma severity: instrument refinement.

The focus of this study is to evaluate a brief parent-report instrument, the Severity of Chronic Asthma (SCA) scale, that conforms to the national guidelines for assessing asthma. Convergent validity was found between the SCA and other measures related to asthma severity including an illness severity scale (How Bad is the Asthma?), asthma management scales for parents and children, and the pediatric quality-of-life scale. The SCA is a multidimensional scale with appropriate evidence of reliability and validity that may be a heuristic and effective measure in both clinical practice and research endeavors.

Striving for therapeutic relationships: parent-provider communication in the developmental treatment setting.

The purpose of this grounded theory study is to develop a beginning substantive theory that explains the communication process between parents of children receiving center-based services for developmental delays and disabilities and the professional providers of those services. Communication is defined broadly as including both content and relationship dimensions. Twenty parents and 14 providers described their experience of communication with one another.

Family perceptions of the usual source of care among children with asthma by race/ethnicity, language, and family income.

A usual source of care (USC) can serve as the foundation for good primary health care and is critical for children living with a chronic health condition. This study applies national data to the following objectives: (1) describe family reports of the presence and characteristics of the USC for children with asthma; (2) examine evidence of systematic differences in the USC for these children with asthma by race/ethnicity, English language proficiency in Hispanic respondents, and family income; and (3) conduct multivariate analysis adjusting for possible confounding factors to examine independent effects of race/ethnicity, language, and income. Data from the 1996-2000 Medical Expenditure Panel Survey (MEPS) were analyzed.

Presence and characteristics of medical home and health services utilization among children with asthma.

Introduction: Having a medical home is advocated by the National Association of Pediatric Nurse Practitioners and others, yet there is limited research that documents desired health benefits. We examine the presence of medical home characteristics and describe relationships between medical home and health services utilization in a national sample that includes children with asthma.

Method: Medical home is represented by: (a) the presence of a usual source of care (USC), (b) identification of a named person as USC, and (c) a 10-item index of other medical home characteristics.

Pain in children with cerebral palsy: a review.

Children with cerebral palsy (CP) face many challenges including impaired motor control and coordination, functional impairment, sensory disturbances, and, sometimes, communication difficulties and cognitive deficits. Pain also may be a problem for children with CP due in part to the inherent deficits associated with the disease, as well as the invasive medical and surgical procedures and rehabilitative activities children with CP undergo on a regular basis. A review of current literature indicates pain is a common experience for children with CP and has been understudied in this population.