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. Linear mixed models, with the interaction term of group by time, were used to assess the efficacy of the intervention over 12 months using data from 3 time points: baseline, 6 and 12 months. The outcome measures were self-efficacy, parent and child shared management of chronic condition, coping skills, parental depressive symptoms and quality of life. Results All of the outcomes improved within the intervention group over 12 months. Self-efficacy was the strongest outcome which remained significantly different from the control group 12 months post intervention, without any statistical adjustment (p = 0.045). The coefficient of the interaction term for study group (intervention or control) by time, quantifying the intervention effect, was statistically significant for four of five pre-specified study outcomes, favorably so toward the intervention group (p < 0.05, with the 5th outcome, parental depression, p = 0.052). Conclusions for Practice The Building on Family Strengths intervention was efficacious in improving self-efficacy, shared management, coping skills, and quality of life and decreasing depressive symptoms in parents, in particular for parents who were most impacted by the lack of these strengths and skills at baseline. These results are encouraging and future studies to investigate the efficacy of this intervention in an Internet-based setting or other modalities are encouraged.

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. Despite no differences at baseline, intervention participants had higher scores on self-efficacy to manage the child's condition (p = 0.049), coping with childhood chronic illness (p < 0.001), parent-child shared management of the condition (p = 0.097), family quality of life (p = 0.010), and, lower scores on a measure of depressive symptoms (p = 0.046) at the 6-month end-point. Average effect-sizes were modest across outcomes (7-11% improvement) with intervention participants having baseline scores in the least favorable quartile improving the most (12-41%). This research provides evidence that the BFS curriculum can yield significant improvements across five important outcomes for parents of children with various chronic conditions. Parent education programs should be offered especially to parents of children with chronic health conditions, regardless of the type of condition, who lack adequate support. These programs can help parents cope with and manage their children's chronic conditions more effectively.

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. Nine parent-child dyads participated in an 8-week protocol utilizing MBI and comparisons of objective (actigraphy) and subjective (sleep diaries) data. Results suggest that parent and children are able to identify a target behavior to change and complete the protocol. Further, preliminary evidence indicates that sleep patterns change using MBI. Future research will be directed toward comparative effectiveness testing and exploring ways in which it can be adapted and incorporated into school nursing practice.

A systematic review of the association between obesity and asthma in children.

AIM: To provide a comprehensive integration of contemporary studies focusing on the relationship between obesity and asthma in paediatric populations. BACKGROUND: The simultaneous increase in asthma and obesity prevalence has been widely discussed over the past 20 years. Although studies have discovered a positive correlation between the two, evidence-based findings are needed to develop nursing interventions. DESIGN: A quantitative systematic review on the literature was conducted from June-December 2011. DATA SOURCES: An electronic database search was conducted for studies published between January 1966-May 2011. Additional articles were identified through the reference lists of reviewed papers. REVIEW METHODS: Inclusion/exclusion criteria and quality appraisal were applied to ensure research primarily designed to study the relationship between obesity and asthma in children was included. RESULTS: The majority of studies support a positive association between obesity and asthma in children. Among correlates recognized as important effect modifiers, gender was the most prominent, with obese girls more likely to have asthma diagnoses than obese boys. Scrutinization of covariates in selected studies revealed that most related to children's demographic characteristics and were inconsistent across the studies. CONCLUSIONS: This review was designed to integrate contemporary scientific findings on the association between obesity and asthma by including a large number of studies with variant research designs. To identify high-risk groups and develop nursing interventions to help children affected by both epidemics, more interdisciplinary and well-designed investigations focusing on an expanded spectrum of correlates including demographic and behavioural factors are warranted.

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. This commentary extends previous research reviews by identifying the current gaps in sleep research, highlighting future directions needed in sleep research, and explaining why school nurses are best suited to address this growing public health issue.

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 < 0.002], medium (P < 0.001) and high thresholds (P < 0.001) between JIA and asthma groups, and at the high threshold between JIA and controls (P < 0.009). Significant differences were found for specificity at the low (P < 0.001), medium (P < 0.001) and high thresholds (P < 0.001) between JIA and asthma groups, and between JIA and controls (low, P < 0.002: medium, P < 0.002: high, P < 0.008 threshold). PSG TST, WASO and SE were not significantly different among the groups, but significant group differences were found for actigraphy TST, WASO and SE at all three thresholds. Actigraphy showed the least overestimation or underestimation of sleep or wakefulness at the medium threshold for TST and WASO for all three groups. Compared to PSG, actigraphy was most accurate in the identification of sleep from wakefulness in 9- to 11-year-old healthy children, and less accurate in children with JIA and asthma.

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. OBJECTIVES: The aim of this study was to compare daytime PA levels in children with and without asthma and examine the relationships among asthma, PA, body mass index (BMI), and child reports of symptoms. METHODS: Physical activity as measured by actigraphy and self-report symptoms of coughing, wheezing, chest tightness, perceived tiredness, sleepiness, and alertness were obtained in 54 children aged 9-11 years with and without asthma for 7 consecutive days. Activity variables derived from actigraphy included (a) mean daytime activity level; (b) peak daytime activity level; and (c) time duration spent in sedentary, light, moderate, vigorous, and total moderate plus vigorous PA (MVPA). RESULTS: Children with and without asthma did not differ on BMI or activity levels. Children with asthma reported more activity limitations due to breathing problems than children without asthma (p < .01). In multivariate analyses, asthma predicted reduced mean, peak, and total time spent in MVPA level after controlling for gender, BMI, and self-report of symptoms. A significant interaction was found between asthma and BMI on mean, peak, and total time spent in MVPA. DISCUSSION: The association between asthma and PA is complex when the child's BMI is considered. Results suggest that reduced PAs with respect to respiratory symptom severity, childhood obesity, and functional impairment are important areas for future studies.

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. Data were analyzed cross-sectionally. Coping skills were assessed using F-COPES, and depressive symptoms were measured using CESD 10, both previously tested tools. Multivariable regression models measured the association of coping skills with depressive symptoms, parents' rating of severity and demographic characteristics. RESULTS: Among 129 parents 54% had depressive symptoms above standard normal threshold. Parents with better coping skills had significantly fewer depressive symptoms. The severity of child's condition, parental marital status and employment status were significantly related to depressive symptoms; after accounting for these factors, better coping skills were still associated with fewer depressive symptoms (P-value < 0.05). CONCLUSIONS: Parents of CSHCN are at increased risk for depressive symptoms, especially if single and unemployed. In this study better parental coping skills were associated with fewer depressive symptoms, regardless of the severity of child's condition; and remained significant after accounting for demographic factors. Educational interventions to improve coping skills for parents of children who have a variety of diagnoses and severity levels may potentially mitigate the manifestation of depressive symptoms and in turn improve parenting.

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. RESULTS: Non-Hispanic black children used more urgent care services and fewer preventive health services. Children in low-income families (125%-199% of the poverty line) had the lowest levels of prescription fills and general checkups. Children whose mothers had more education had more checkups and fewer emergency department visits. Children who were insured during the 2-year study period used more health services for asthma, not including emergency department visits. CONCLUSION: Minority children and children of socioeconomically disadvantaged families use more urgent care and less preventive care for asthma. Children without health insurance use fewer health services overall. Future research should address how related factors might explain health services utilization in effectively managing asthma in children.

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. The article reports major feedback received from parent focus groups, leaders in several cultural communities, and participants in a pilot class as BFS underwent final refinement. This feedback greatly influences the development of the BFS curriculum, as without it the final product going into a randomized clinical trial would be less attuned to the needs of parents of children with chronic illnesses. Other researchers and family educators may find this feedback useful as they improve their own research and program offerings.

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. METHODS: Cross-sectional descriptive study with 129 parents of children with chronic conditions. RESULTS: Internal consistency of the shared management scale was adequate (Cronbach's Alpha: overall scale, 0.91; and subscales: desire, 0.79; knowledge, 0.76; and current actions, 0.86). Observed relationships were in theoretically expected directions. In unadjusted univariate analyses, there were statistically significant associations between parent-child shared management and each of the following variables: (a) condition grouping and severity, (b) parent self-efficacy and coping, (c) amount and frequency of child's limitation to do things, and (d) emergency visits in the past 6 months (all at p < 0.01 levels). Adjusted multivariable analysis retained condition severity, parent self-efficacy, and coping as significant factors. CONCLUSIONS: The parent-child shared management tool can be used in research to broaden understanding of this important construct and identify precursors and outcomes of high or low shared management in a family. Nurses might use the tool in clinical practice to more accurately gauge parent desire for, knowledge of, and current actions in support of parent-child shared management so interventions can be individualized to the family's unique wishes.

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. The data for this analysis were collected during classes for parents of children with chronic conditions who took part in a randomized controlled study of a curriculum's effectiveness. During facilitated discussions, parents discussed challenges they faced and generated strategies they found helpful. Qualitative data analysis revealed dominant themes across subject areas. Challenges included social isolation, strained relationships and ongoing frustrations with health care and educational systems. Helpful strategies focused on being prepared, connecting with peers, becoming an advocate, developing partnerships and caring for one's self. Implications for health care providers include: understanding common challenges parents face; promoting parent-to-parent connections; and building partnerships with parents and their children with special needs.

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. The core phenomenon constructed from the data was striving for therapeutic relationships within a context of uncertainty. Both parents and providers operated in a context of uncertainty regarding the child and his or her development and prospects for the future as well as their expectations of each other. Both parents and providers used strategies of balancing, reading the cues, questioning, managing uncertainty, and managing the sessions. The outcomes were relationships that were valued by the extent to which they were perceived as therapeutic to parents and child.

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). METHOD: MKA reports of asthma are compared with pharmacy records of prescriptions beneficial in asthma treatment ("asthma medications") for children 0 to 17 years old in the 1996 Medical Expenditure Panel Survey. RESULTS: "Asthma medications" were filled for 6.5% of children, yet the MKA did not report asthma for 47.3% of them. However, for 61.2% of these children, the MKA reported plausible alternative medical conditions. For 9.0%, diagnosis information was missing. Among children with an "asthma medication," the MKA was less likely to report either asthma or a plausible alternative diagnosis for girls and for children 0 to 5 years of age. Reporting was not statistically different by child race/ethnicity, household income, education level, and MKA English language proficiency. DISCUSSION: Surveys do not overlook as many children with asthma as previously reported. Among children with "asthma medications," only sex and age appear to be different for children whose MKA reported either asthma or a plausible alternative diagnosis versus those whose MKA did not report either.

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. Health services utilization over a calendar year is measured by (a) emergency department visits for asthma, (b) wellness examination, and (c) rescue bronchodilator fill/refill. Analyses include chi-square and logistic regression. RESULTS: A USC was reported for 95% of participants. Children with a USC were more likely to have a wellness examination (odds ratio, 2.10; 95% confidence interval, 1.15-3.81). Overall, 51% reported the USC to be a facility versus a named person. Identifying a person as the USC was related to higher scores on the 10-item medical home index but not to other outcomes. DISCUSSION: Most parents were satisfied with the USC. Benefits of having a USC, but not necessarily a named person, appear in preventive actions.

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. PARTICIPANTS: 110 parents of children with DS and 29 parents of children with typical development (TD), age 5 to 18 years. INTERVENTIONS: N/A. MEASUREMENTS AND RESULTS: Children's Sleep Habits Questionnaire was employed to collect information about sleep disturbances in 8 domains (subscales) and a total score. The Life Habits (Life-H) questionnaire sampled information about daily life habits in 11 domains. Multivariable regression modeling was used to assess the associations between sleep disturbances and the accomplishment of daily life habits. Sleep disordered breathing (SDB) was a significant explanatory factor in 10 of 11 daily life habits and the total Life-H score. Sleep anxiety and parasomnias significantly influenced the accomplishment of life habits in children with DS as compared to children with typical development. When evaluated in multivariable models in conjunction with the other 7 domains of sleep disturbances, SDB was the most dominant explanatory factor for accomplishment of life habits. CONCLUSIONS: Sleep disturbances are negatively related to accomplishment of daily life functions. Prevention and treatment of sleep problems, particularly sleep disordered breathing, in children with DS may lead to enhanced accomplishment of daily life habits and activities.

Teaching pediatric health assessment: using Internet capabilities.

Changes brought about by rapidly expanding information technology are affecting many aspects of life, including nursing education. Graduates must be comfortable and flexible with the use of information technology because they will be required to use it in their practice and continuing education activities. In this article, the authors describe their experience in implementing and refining the use of World Wide Web-based technology to teach pediatric health assessment to pediatric and family nurse practitioner students. The article includes reflections on preparation, implementation, and evaluation. The students' level of confidence in their ability to perform pediatric health assessment rose, as did their test scores, and faculty deemed the revision successful and timesaving for them.

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. Further emphasis and research on appropriate assessment and management strategies sensitive to the unique characteristics and limitations of children with CP are warranted.

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. The aim of this comprehensive review is to synthesize studies and present the historical context of evolving technologies, methodologies, and knowledge about SDB and DS. Future research opportunities and practice implications are discussed.