The lockdown that was imposed by governments as part of the attempt to contain the COVID-19 pandemic included extreme measures, such as home confinement and the shutting down of special education systems. Our aim was to learn about the core experiences of parents of children with autism during this significant life disturbance. Thirty-one parents of 25 children with autism participated in semi-structured telephone interviews which were transcribed verbatim and underwent a qualitative, immersion/crystallization analysis. The analysis was conducted in an iterative consensus-building process to identify parents’ experiences, concerns, challenges, coping strategies, and perceived needs during the lockdown. The main themes that emerged related to the various parental concerns; the major difficulties encountered during this unique time, the functional, social, and behavioral implications the lockdown had on these children; and the manner in which the parents coped as an indication of their resourcefulness and outlook. Our findings broaden the insight into the underlying elements of the hardships and gains experienced by children with autism and their parents in times of significant life adversity. Programs in such times should be directed at supporting and guiding parents on how to better accommodate to the situation, thereby optimizing their coping strategies and resilience. Lay abstract The lockdown and home isolation due to the COVID-19 pandemic led to significant transformation in lifestyles. Being a parent in this situation was not easy for anyone, much less for parents of children with special needs. The shutting down of special education systems meant that parents lost a vital support network and had to be the sole full-time caregivers despite often lacking the skills to cope with this new and daunting situation. We interviewed parents and learned that the main difficulties faced by homebound autistic children stemmed from the change in routine, lack of special education services, limited physical space, and food- and sleep-related issues. Some children experienced worsening in behavioral, social, and developmental domains, yet others seemed to not only overcome the challenges of changing conditions but even benefit from them. The children’s success or failure was directly related to how their parents coped. The key factors that enabled successful coping were the parents’ ability to accommodate to the child’s needs, their own creativeness and resourcefulness, and a generally positive outlook. The results of this analysis revealed that the best way to benefit autistic children caught up in drastic changes in their routine lifestyle is to invest in a strong support system for their parents.
Objectives : Stenotrophomonas maltophilia is a gram-negative opportunistic bacterium that may cause a myriad of clinical diseases in immunocompromised individuals. We aimed to describe the clinical characteristics, risk factors, mortality, and treatment of S. maltophilia bacteremia in critically ill children, a topic on which data are sparse. Design: A multicenter observational retrospective study in which medical charts of critically ill children with S. maltophilia bacteremia were reviewed between 2012 and 2017. Setting: Data were collected from each of the four largest PICUs nationwide, allocated in tertiary medical centers to which children with complex conditions are referred regularly. Patients: A total of 68 suitable cases of S. maltophilia bacteremia were retrieved and reviewed. Measurements and Main Results: The total occurrence rate of S. maltophilia isolation had increased significantly during the study period (r = 0.65; p = 0.02). The crude mortality was 42%, and the attributed mortality was 18%. Significant risk factors for mortality were a longer length of hospital stay prior to infection (33 d in nonsurvivors vs 28 in survivors; p = 0.03), a nosocomial source of infection (p = 0.02), presentation with septic shock (p < 0.001), and treatment with chemotherapy (p = 0.007) or carbapenem antibiotics (p = 0.05) prior to culture retrieval. On multivariate analysis, septic shock (odds ratio, 14.6; 95% CI, 1.45–147.05; p = 0.023) and being treated with chemotherapy prior to infection (odds ratio, 5.2; 95% CI, 1.59–17.19; p = 0.006)] were associated with mortality. The combination of ciprofloxacin, trimethoprim-sulfamethoxazole, and minocycline resulted in the longest survival time (p < 0.01). Conclusions: The significant attributed mortality associated with S. maltophilia bacteremia in critically ill children calls for an aggressive therapeutic approach. The findings of this investigation favor a combination of trimethoprim-sulfamethoxazole, ciprofloxacin, and minocycline.
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