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1.  Family Functioning and Treatment Adherence in Children and Adolescents with Cystic Fibrosis 
Background: Cystic fibrosis (CF) is one of the most challenging pediatric illnesses for families to manage. There is, however, limited research that considers the associations between family functioning and treatment adherence in children and adolescents with CF.
Methods: Nineteen children with CF (mean age=12.42 years, mean forced expiratory volume in one second (FEV1)=90.9% predicted) and their families participated in the study. Caregiver and child participants completed interview-based assessments and were then videotaped during a family mealtime.
Results: Mean scores on several domains of family functioning fell in the “unhealthy” range. Better family functioning was found among older children. Better family functioning was also associated with better adherence to antibiotic treatment and worse adherence to enzymes.
Conclusions: Findings suggest that family functioning may be an important correlate of treatment adherence in children and adolescents with CF. Future research should replicate these findings in larger samples of children and adolescents with CF.
doi:10.1089/ped.2014.0327
PMCID: PMC4062112  PMID: 24963456
2.  Ethnic Differences in Caregiver Quality of Life in Pediatric Asthma 
Objective
The aim of this study was to determine ethnic and site differences in quality of life (QOL) in a sample of Latino (Puerto Rican and Dominican) and non-Latino White (NLW) caregivers of children with asthma in mainland US and Island PR. We also investigated ethnic and site differences in associations between caregiver QOL and indicators of asthma morbidity.
Method
Seven-hundred and eighty-seven children with asthma (7–16 years of age) and their primary caregivers participated. Primary caregivers completed a measure of QOL, child asthma control, and emergency department utilization, among other measures.
Results
Ethnic and site differences were found on total QOL scores (ΔF(1, 783) = 29.46, p < .001). Island PR caregivers reported worse QOL scores than RI Latino and NLW caregivers; RI Latino caregivers reported significantly worse QOL scores than NLW caregivers. In RI Latino and Island PR children, worse caregiver QOL was associated with asthma that was not in control and with 1 or more ED visits.
Conclusion
Latino caregivers may be experiencing a greater level of burden related to their child’s asthma than NLW caregivers. Caregiver QOL in pediatric asthma may be a reflection of broader, contextual stress that some Latino caregivers experience on a daily basis (e.g., cultural beliefs, acculturation). Future research should continue to investigate mechanisms that explain the burden associated with pediatric asthma in Latino families, as well as whether QOL assessments should consider the impact of everyday stressors on caregiver QOL in pediatric asthma.
doi:10.1097/DBP.0b013e318264c2b7
PMCID: PMC3463809  PMID: 23027132
pediatric asthma; quality of life; caregivers; disparities; ethnicity
3.  Medication Adherence Among Latino and Non-Latino White Children With Asthma 
Pediatrics  2012;129(6):e1404-e1410.
OBJECTIVE:
Latino children of Caribbean descent remain at high risk for poorly controlled asthma. Controller medications improve asthma control; however, medication adherence remains suboptimal, particularly among minorities. This study assessed socioeconomic, family-based, and parent factors in medication adherence among children with asthma from Rhode Island (RI; Latino and non-Latino white [NLW]) and Puerto Rico.
METHODS:
Data collection occurred as part of a multicenter study of asthma disparities. Our sample included children (ages 7–16) prescribed objectively monitored controller medications (n = 277; 80 island Puerto Rico, 114 RI Latino, 83 RI NLW). Parents completed questionnaires regarding family background and beliefs about medications. Families participated in an interview regarding asthma management. Multilevel analyses (maximum likelihood estimates) accounting for children being nested within site and ethnic group assessed the contribution of social context, family, and parent variables to medication adherence.
RESULTS:
Medication adherence differed by ethnic group (F2, 271 = 7.46, P < .01), with NLW families demonstrating the highest levels of adherence. Multilevel models indicated that parental beliefs about medication necessity and family organization regarding medication use were significant predictors of adherence, even for families below the poverty threshold. With family factors in the model, a substantial improvement in model fit occurred (Akaike Information Criterion change of 103.45).
CONCLUSIONS:
Adherence to controller medications was lower among Latino children in our sample. Targeted interventions that capitalize on existing family resources, emphasize structure, and address parental beliefs about the importance of medications may be of benefit to families from different cultural backgrounds.
doi:10.1542/peds.2011-1391
PMCID: PMC3362901  PMID: 22566417
asthma; patient nonadherence; disparities
4.  Helpful Hints: Caregiver-Generated Asthma Management Strategies and Their Relation to Pediatric Asthma Symptoms and Quality of Life 
Journal of Pediatric Psychology  2012;37(4):414-423.
Objective This mixed-methods study examined the relation between caregiver-generated asthma management strategies and asthma severity in a sample of 200 children with persistent asthma (ages 5–12 years). Methods Caregivers were interviewed about asthma management strategies they found helpful in controlling their child's symptoms. A qualitative content analysis was used to identify household strategies. Indicators of asthma severity included lung functioning (FEV1) and functional severity (FSS). Child quality of life was also assessed (PQLQ). Results Six primary household strategies were identified: Reactive, Planning Ahead, Social, Emotional, Avoiding Triggers, and Cleaning. In general, strategies offered by caregivers did not differ by socioeconomic status. Caregivers who endorsed Avoiding Triggers as effective strategies had children with better lung functioning. Caregivers who endorsed Planning Ahead or Emotional strategies had children with better asthma-related quality of life. Conclusion These household strategies hold promise for reducing pediatric asthma symptoms and improving child quality of life.
doi:10.1093/jpepsy/jss001
PMCID: PMC3334537  PMID: 22408054
asthma; health behavior; quality of life
5.  Differences in Environmental Control and Asthma Outcomes Among Urban Latino, African American, and Non–Latino White Families 
Latino and African American children with asthma are at increased risk for asthma morbidity compared with non–Latino White children. Environmental control (ie, environmental exposures and family strategies to control them) may contribute to greater asthma morbidity for ethnic minority children living in urban environments. This study examined ethnic differences in a semi-structured assessment of environmental control, associations between environmental control and asthma outcomes (asthma control, functional limitation, and emergency department [ED] use), and ethnic differences in environmental triggers in a sample of urban Latino, African American, and non–Latino White families. One hundred thirty-three children (6–13 years of age) and their caregivers completed demographic questionnaires, measures of asthma control and morbidity, and a semi-structured interview assessing environmental control. Reported environmental control differed significantly by ethnicity (P<0.05), with Latino families reporting higher levels of environmental control. Reported environmental control was significantly associated with asthma control (P<0.017) and functional limitation (P<0.017). Reported environmental control and ED use were significantly associated in Latino families (P<0.05). Non–Latino White and African American families reported more secondhand smoke exposure than Latino families (P<0.001). Latino families reported more optimal home environmental control than other ethnic groups. Substantial ethnic differences in asthma triggers suggest that observed ethnic disparities in asthma may be due, at least in part, to differences in the home environment.
doi:10.1089/ped.2011.0081
PMCID: PMC3255502  PMID: 22276226
6.  Development and Initial Validation of a Pictorial Quality of Life Measure for Young Children with Asthma 
Journal of Pediatric Psychology  2009;34(9):966-976.
Objective To develop and assess the psychometric properties of a pictorial version of the Pediatric Asthma Quality of Life Questionnaire (PAQLQ). Methods A pictorial PAQLQ was administered to 101 children with mild to severe asthma between 5 and 7 years of age. A subgroup of 48 children followed longitudinally completed the established version of the PAQLQ. Results A confirmatory factor analysis with modifications supported the factor structure of the established PAQLQ. The pictorial measure exhibited internal consistency reliability and convergent, discriminant, and predictive validity. Conclusions Results suggest that the pictorial version of the PAQLQ has an underlying factor structure that is similar to that of the established PAQLQ. Future research with larger and diverse samples is needed to confirm the factor structure of the pictorial PAQLQ.
doi:10.1093/jpepsy/jsn145
PMCID: PMC2782248  PMID: 19168502
asthma; children; psychometric validation; quality of life.
7.  A Cumulative Risk Model Predicting Caregiver Quality of Life in Pediatric Asthma 
Journal of Pediatric Psychology  2008;33(8):809-818.
Objective To examine the relationship between a cumulative risk model and caregiver quality of life (QOL) in pediatric asthma and determine whether caregiver QOL is predicted by a linear or quadratic model of cumulative risk. Methods One hundred and ninety-three families of children between the ages of 5 and 12 years with mild to severe asthma completed a background questionnaire and measures of QOL, asthma severity, family burden, and family stress. A cumulative risk model based on risk factors from these measures was calculated for each caregiver. Results The cumulative risk model significantly predicted caregiver QOL as a quadratic function. Caregivers with numerous risk factors experienced a dramatic worsening of QOL. Conclusions Findings suggest that caregiver QOL is best predicted by the interaction and not the summation of these factors. Interventions focused on one area of family risk may be effective in reducing poor QOL in caregivers of children with asthma.
doi:10.1093/jpepsy/jsn028
PMCID: PMC2493504  PMID: 18356183
asthma; caregiver; family; quality of life; risk factors

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