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 (FEV 1 )=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.
Objective. To examine caregiver quality of life (QOL) related to pediatric asthma among families from Latino, African American, and non-Latino white (NLW) backgrounds. Methods. In all, 94 children with persistent asthma (6-15 years) and their primary caregivers completed interview-administered questionnaires. Results. Overall QOL and subscale scores differed across race/ethnicity, with NLW caregivers reporting higher QOL. Caregivers who expressed more concerns about their child’s medications and more beliefs in the necessity of asthma medications had lower QOL. In African American and Latino families, caregiver QOL mediated the association between beliefs about the necessity of asthma medications and child emergency department (ED) use. Conclusions. Caregiver beliefs and concerns related to child asthma medications may begin to explain differences in caregiver QOL across NLW, Latino, and African American caregivers. Caregiver QOL may be a mechanism by which caregiver beliefs and concerns about asthma medications are associated with child ED use.
1 December 2017 in Pediatric Allergy, Immunology, and Pulmonology
Objective: This pilot study explored the initial feasibility and efficacy of providing feedback to low-income, urban caregivers of children with persistent asthma about their daily experiences reported via ecological momentary assessment (EMA) on caregiver emotional health (quality of life, perceived stress, and positive affect). Methods: Data were collected from 28 caregivers and their children (7–12 years). Caregivers completed a baseline session, 14 days of EMA surveys via smartphone, and were randomized to intervention or control groups. The intervention group received individualized EMA feedback regarding areas of daily life that may be making it harder to manage child asthma. The control group received information on general child health. Caregivers completed assessments 4 weeks and 4 months postintervention. Results: In the EMA group, caregivers experienced an increase in perceived stress from baseline to postintervention, but a decrease in perceived stress from postintervention to follow-up. There were no significant changes in outcome measures for the control group. Conclusion: Preliminary findings suggest that providing caregivers with feedback from daily assessments may reduce stress, which could be targeted in future mobile health interventions for low-income, urban families of children with asthma.
Objective: Racial/ethnic minority caregivers of children with asthma are at risk for low levels of quality of life (QOL). Limited research has identified factors that contribute to lower QOL among African American caregivers. This study examined associations between acculturation (e.g., engaging in values/beliefs traditional of one's culture versus adopting mainstream cultural views) and caregiver QOL in low-income, urban African American families of children (7–12 years) with persistent asthma. We also investigated the association between caregiver QOL and child emergency department (ED) use. Methods: Fifty-five caregivers and their children completed interview-based questionnaires in a single research session. Caregivers completed the Pediatric Asthma Caregiver Quality of Life Questionnaire (PACQLQ), the African American Acculturation Scale-Revised (AAAS-R), and reported on child asthma variables. Children completed items assessing asthma control. Results: Higher overall QOL and emotional function subscale scores were associated with more traditional African American religious beliefs/practices (r = .288, p = .033; r = .333, p = .013). Higher emotional function subscale scores were associated with more traditional values of African American families (r = .306, p = .023). Lower QOL was found among caregivers of children who had visited the ED three or more times in the last year. Conclusions: Less acculturation tied to religious beliefs/practices and family values (as measured by the AAAS-R) may serve a protective role in reducing the burden low-income, urban African American caregivers experience in managing child asthma. This study is the first of its kind to study acculturation in African American caregivers of children with asthma.