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Background Novice researchers who aspire to contribute to the body of knowledge concerning rare diseases face unique challenges in developing and conducting studies. These include unknown effect sizes in previous research, limitations in recruitment and enrolment, and managing data from a multi-site sample. Aim To describe the challenges in researching rare diseases and possible solutions using a doctoral student exemplar from a cross-sectional correlational study of fatigue. Discussion The authors discuss the lessons learned from the study, including the challenges in recruitment, communication, collecting biological data and managing data in general. They posit possible solutions, including improving multi-site coordination, feasible methods for exploring sleep and stress, and measures to prevent equipment and data loss. Conclusion Rare populations, such as young survivors of childhood brain tumours, deserve a voice in building the body of knowledge needed for more precise, personalised healthcare. It is possible with foresight for the novice researcher to make such a contribution. Implications for practice Improved knowledge and assessment of symptoms during childhood will improve the detection of health risk factors and enable earlier intervention.

Objective To examine the relationship between formaldehyde exposure and fetal growth in the second trimester and the potential mediating role of oxidative stress in this relationship. Design A cross-sectional study was conducted. Setting The participants were recruited from one university-related clinic and two private obstetrics and gynecology offices in the Southeastern United States. Participants A convenience sample of 140 healthy pregnant women in the second trimester of pregnancy was enrolled from November 2013 through June 2014. Methods Formaldehyde exposure was measured via vapor monitors worn by the participants for 24 hours. One-time urine samples were collected during a routine prenatal visit to measure the level of 15-isoprostane F 2t and cotinine as biomarkers of oxidative stress and tobacco smoking, respectively. Urine creatinine was measured to standardize the cotinine and 15-isoprostane F 2t levels. Results Eighty-eight participants (63%) returned their formaldehyde monitors. The linear regression model showed that the dichotomized level of formaldehyde exposure ( 0.03 ppm) was a significant predictor of biparietal diameter percentile after controlling for maternal race ( p 2t and fetal growth was nonsignificant, and the mediating role of oxidative stress in the relationship between formaldehyde exposure and biparietal diameter was not confirmed. Conclusion A relationship was found between formaldehyde exposure and biparietal diameter in the second trimester. Although further research is necessary to confirm the results of this study, nurses may consider advising pregnant women to limit their exposure to formaldehyde during pregnancy.

Little is known about the influence of sleep quality, stress, and caregiver burden on quality of life in maternal caregivers of young children with bronchopulmonary dysplasia (BPD). In 61 maternal caregivers (mean age 29.59 years) of young children with BPD (mean age 13.93 months), caregivers reported sleeping a mean of 5.8 hours, and significant correlations were found between sleep quality and depressive symptoms and stress, as well as an inverse correlation with quality of life. Sleep quality was found to be the most significant predictor of quality of life in maternal caregivers.

Elevated brachial blood pressure (BP) in childhood tracks into adulthood. Central BP and measures of arterial stiffness, such as aortic augmentation index (AIx) and pulse wave velocity (PWV), have been associated with future cardiovascular disease. This pilot study assessed the feasibility of noninvasively measuring these parameters in preschool children and explored factors that may be associated with elevated BP in this age group. Brachial BP was measured using an electronic oscillometric unit (Dinamap PRO 100) and defined as elevated when systolic BP (SBP) and/or diastolic BP (DBP) was ≥ the 90th percentile for age, gender, and height. Central BP, AIx, and PWV were measured using applanation tonometry (SphygmoCor). C-reactive protein (CRP) was measured in serum samples. Sixteen African-American preschool children were recruited (4.4 ± 0.8 years, 69% males), 6 (38%) of whom had an elevated brachial BP (110 ± 10/69 ± 4 vs. 96 ± 8/55 ± 6 mm Hg, Cohen's d = 2.2). Children with elevated brachial BP had higher central SBP (d = 1.6) and DBP (d = 1.96) (97 ± 6/68 ± 4 vs. 85 ± 8/57 ± 6 mm Hg), AIx (d = 0.88) (31 ± 8 vs. 18 ± 16%, standardized to heart rate), and CRP (3.1 [2.3–6.3] vs. 0.1 [0.1–0.3] mg/dL, d = 2). There was no significant difference in PWV between groups (d = 0.26). CRP and SBP (Spearman r = 0.70), DBP (r = 0.68), central SBP (r = 0.58), and central DBP (r = 0.71) were positively correlated. Wide confidence intervals for the estimated effect sizes indicated a large degree of uncertainty about all estimates due to the small sample size. Noninvasive assessment of central BP and arterial stiffness is feasible in preschool children. Vascular inflammation may be an important factor that influences BP at an early age. Further studies in preschool children are needed to elucidate mechanisms of early onset hypertension.

Introduction: It is estimated that 2-3 million children in the US have diagnosed hypertension that can track to adulthood and is a risk factor for cardiovascular disease (CVD). However, the prevalence of instance elevations of blood pressure (BP) in children is estimated to greatly exceed the prevalence of hypertension. There is increasing evidence that risk factors for CVD, including hypertension and instance elevations in BP, begin in childhood. It is unclear when the elevations in BP first appear in children and what factors influence BP. Few studies have examined instance elevations in BP in preschool children and/or what factors influence BP. Hypothesis: The purpose of this study was to determine the prevalence of elevated BP readings in a group of rural and urban preschool children and to determine if there were differences in BP status (normal, prehypertensive, or hypertensive range) based on race, gender, location, prematurity status, or body mass index (BMI) status. Methods: A cross-sectional comparative design was used to address the purpose. A convenience sample of 56 3-5 year old children (27 rural, 29 urban; 37 male, 19 female; 33 Black, 21 White) were recruited from Head Start Centers. Height, weight, and BP were collected according to protocols at the Centers. Results: Based on pediatric percentiles, 30% of the children had elevated BP readings; 14% Pre-Hypertensive readings (6 males; 2 female; 4 Black; 4 White); 16% Hypertensive readings (6 males; 3 females; 5 Black, 4 White). Seventy-six percent of elevated BP readings were systolic BP (SBP); 47% of those with elevated BP readings had diastolic elevations, while 23.5% had elevations in both SBP and DBP. Nine participants were overweight; 5 were obese. Over 65% of the children with BP elevations were normoweight. There were no differences in BP status based on race, gender, location, prematurity or BMI Status. There was a small effect size for the relationship between race, BMI status, prematurity and BP status. Conclusions: Thirty percent of 3-5 year-old children in this sample had elevated BP readings, the majority of which were SBP. BP should be measured in children at each visit to health care providers and elevations in BP readings addressed early to prevent later hypertension and other CVDs.

Environmental allergens are major triggers for pediatric asthma. While children’s greatest exposure to indoor allergens is in the home, other public places where children spend a large amount of time, such as school and day care centers, may also be sources of significant allergen encounters. The purpose of this article is to describe schoolroom allergen levels from 3 different geographic sites obtained from dust samples collected in the, fall and in spring. Environmental dust samples were collected from elementary schools in Birmingham (AL), Detroit (MI), and Houston (TX), from 4 room locations, including the cafeteria, library, upper grades, and lower grades. Samples were assayed for dust mite (Dermatophagoides pteronyssinus and Dermatophagoides farinae), cat (Felis domesticus), and cockroach (Blatella germanica 2) allergen levels. Allergen levels varied by geographic location and type of schoolroom. Schoolroom settings differed by the type of flooring (hard and carpet), room characteristics and use (food service, library shelves with books, and general classroom with multiple types of materials [individual desks and different types of furniture]), and the average age of the schoolroom dwellers (younger vs older children). Dust mite, cat, and cockroach allergens were present in all schoolrooms and all sites at varying levels by season and by type of room. Schools may be important sources of direct allergen exposure and reservoirs that could potentially contribute to allergic sensitization and, disease exacerbation in. children. Further studies are needed to carefully examine the environmental allergen load in schools and its effect on children.

This article describes the evaluation of a comprehensive school-based asthma management program in an inner-city, largely African-American school system. All 54 elementary schools (combined enrollment 13,247 students) from a single urban school system participated in this study. Schools were randomly divided between immediate and delayed intervention programs. The intervention consisted of 3 separate educational programs (for school faculty/staff, students with asthma, and peers without asthma) and medical management for the children with asthma (including an Individual Asthma Action Plan, medications, and peakflow meters). Children with asthma were identified using a case detection program and 736 were enrolled into the intervention study. No significant differences were observed in school absences, grade point average, emergency room visits, or hospitalizations between the immediate and delayed intervention groups. Significant increases in knowledge were observed in the immediate intervention group. This study of a school-based asthma management education and medical intervention program did not show any differences between the intervention and control groups on morbidity outcomes. Our experience leads us to believe that such measures are difficult to impact and are not always reliable. Future researchers should be aware of the problems associated with using such measures. In addition, connecting children with a regular source of health care in this population was difficult. More intensive methods of medical management, such as school-based health centers or supervised asthma therapy, might prove more effective in inner-city schools.

This article deals with chronically ill schoolage children and their parents' perceptions of their neighborhood. Three hundred and sixty-five chronically ill children (ages 10 through 12) were interviewed about their neighborhood. The children described aspects of their neighborhood that they liked and disliked, and their activity pattems alone and with peers. The parents also evaluated neighborhood safety. Regression analysis was used to identify parentand child-reported items that may have influenced images of neighborhood safety. The findings demonstrate that chronically ill children's activity patterns in their neighborhoods are influenced by child factors (perception of the neighborhood and its safety, gender, type of illness) and by parental factors (perception of neighborhood safety, income, home ownership). The findings also suggest that the patterns of interaction of chronically ill children with their neighborhood may be a source of developmental risk.

Children spend almost 90% of their time indoors, though outside air can be a significant source of potential and actual exposure to outdoor air pollutants. Children are vulnerable to pollutants and toxins because of their size and developing organ systems. Young children have increased respiratory rates and inhale more toxins, and young children often ignore respiratory symptoms and continue play. Outdoor play and recreational activities expose children to outdoor air pollution from sources such as automobiles, power plants, industry, and other combustion sources, which can impact children. Outdoor air pollution has been linked to respiratory illness exacerbations, infant mortality, the development of asthma, and atopy and reduction in lung development in children. This article will examine outdoor air pollution and its impact on children's health, as well as implications for pediatric nursing clinical practice.

Objective. The purpose of this study was to validate a 3-stage asthma case-detection procedure for elementary school-aged children.Methods. The study was performed in 10 elementary schools in 4 inner-city school systems, with a total enrollment of 3539 children. Results of the case-detection procedure were compared with the diagnosis of an asthma specialist study physician, to determine the sensitivity and specificity of the case-detection procedure.Results. Ninety-eight percent of children returned the asthma symptoms questionnaires, and 79% of those children consented to additional testing. Results indicated that the 3-stage procedure had good validity, with sensitivity, specificity, and predictive value of 82%, 93%, and 93%, respectively. A 2-stage procedure using questionnaires and spirometry had similar validity, with sensitivity, specificity, and predictive value of 78%, 93%, and 93%, respectively. However, given the time and expense associated with the 2- or 3-stage procedure and the difficulty of obtaining physician follow-up evaluation of the case-detection diagnosis, schools may prefer to use a 2-item questionnaire that has a lower sensitivity (66%) but higher specificity (96%) and predictive value (95%).Conclusions. Case-detection programs are generally well received by school personnel and can identify children with unrecognized or undiagnosed disease, as well as those with a current diagnosis but poorly controlled disease. This study yields substantial information regarding the validity, yield, and specific types of children who might be identified with the use of such procedures. For the choice of the method of case detection used in a school, the strengths and weaknesses of each procedure, as well as the resources available for case detection, physician referral, and follow-up procedures, must be considered.