Objective: This study aims to assess stress, quality of life, and mental health risk experienced by parents of children with short bowel syndrome (SBS) undergoing intestinal rehabilitation compared to a group of parents of children with common gastrointestinal complaints. Method: Eleven parents of racially/ethnically diverse children with SBS (0-5 years old) were recruited from a multidisciplinary intestinal rehabilitation program in the southeastern United States. Participants completed sociodemographic, mental health risk (PHQ-SADS), parental stress (PSI-4 Short Form), and quality of life (QoL; SF-36) questionnaires. Semistructured interviews of SBS parents were conducted, transcribed, coded, and systematically analyzed using principals of thematic analysis. Results: Significant differences with large effect sizes were found on measures of anxiety, parenting stress, and emotional well-being, indicating greater risk for SBS parents. Parent experiences in three themes were identified: navigating treatment challenges (e.g., high risk of complications), parenting role stress (e.g., respite and self-care), and support systems (e.g., peer-based support). Parents reported a lack of awareness and education surrounding intestinal rehabilitation and SBS, resulting in difficulty accessing quality medical treatment, services, and support. Conclusions: Semistructured interviews provided rich information to better understand SBS parent challenges and generated hypotheses about specific recommendations aimed at improving parent quality of life, health outcomes, and satisfaction with care, as well as the need for integration of mental health screening and evidence-based interventions that address the specific needs of parents. Implications for Impact StatementThe present study finds significant risk of anxiety, parenting stress, and emotional problems in parents of children with short bowel syndrome undergoing intestinal rehabilitation. Interviews with parents highlight the challenges involved in navigating treatment, managing parenting stress, and helpful support systems. Pediatric psychologists are well positioned to help improve the quality of care and access to needed supports for parents of children with these complex medical needs.
Globally, negative impacts of the COVID-19 pandemic on malaria prevention and control efforts have been caused by delayed distributions of long-lasting insecticidal nets (LLIN), decreased outpatient attendance, and disruptions to malaria testing and treatment. Using a mixed methods approach, we aimed to evaluate the impact of COVID-19 on community-level malaria prevention and health-seeking practices in Benin more than one year after the start of the COVID-19 pandemic. We collected data through community-based cross-sectional surveys with 4200 households and ten focus group discussions (FGDs). Mixed effect logistic regression models accounting for a clustered sampling design were used to identify variables associated with main outcomes (good COVID-19 knowledge, LLIN usage and access, and avoidance of health centres). Consistent with the experiences of FGD participants, receiving information from radios or televisions was significantly associated with good COVID-19 knowledge and avoiding health centres because of the pandemic (p<0.001 for both). Qualitative findings also revealed varying and polarizing changes in health-seeking behaviours with participants noting that they either did not change their health-seeking behaviours or went to health centres less or more often because of the pandemic. LLIN usage and access did not decrease in the study area because of the pandemic (LLIN usage: 88% in 2019 to 99.9% in 2021; LLIN access: 62% in 2019 to 73% in 2021). An unexpected change and unintended challenge for sustained malaria prevention included families socially distancing in their homes, resulting in a shortage of LLINs. Our findings showed that there were minimal community-level impacts of the coronavirus pandemic on malaria prevention and health seeking behaviours in rural Benin, which highlights the importance of efforts to sustain malaria prevention and control interventions in the context of the COVID-19 pandemic.
Objective This study examined caregiver perceived impact of the Coronavirus Disease 2019 (COVID-19) pandemic on a diverse sample of U.S. youth with diabetes and their families. Methods Caregivers of youth with diabetes completed an electronic survey in English or Spanish at two sites. Participants provided demographic and disease characteristics and completed the COVID-19 Exposure and Family Impact Scales (CEFIS). Glycemic health was assessed via Hemoglobin A1c (HbA1c) from medical chart review. Analysis of variance and analyses of covariance were utilized to examine racial/ethnic differences in glycemic health and in COVID-19 Exposure, Impact, and Distress scales. Hierarchical linear regression was conducted to predict HbA1c. Thematic analysis was conducted on open-ended responses regarding the effects of COVID-19 on youth and families’ overall and diabetes-related well-being. Results Caregivers (n = 114) of youth with diabetes (M = 12.6 ± 3.5 years) completed study measures. Mean HbA1c for Non-Hispanic White youth was lowest and significantly different from Hispanic and Non-Hispanic Black youth. Exposure to COVID-19 stressors differed by race/ethnicity (p < .05) with Hispanic caregivers reporting greatest exposure. CEFIS scales did not predict HbA1c after controlling for demographic/disease variables. Caregivers described child/family changes during COVID (e.g., more time together, health-related hypervigilance), as well as differences in diabetes management during COVID-19. Conclusions Findings indicate differences in COVID-19 exposure but did not demonstrate other racial/ethnic disparities in COVID-19 impact or distress. Household income was the most important predictor of glycemic health. Addressing structural inequalities experienced by youth with diabetes and their families is critical. Recommendations to support families with diabetes are made.
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