Healthcare experiences of patients with Down syndrome who are Black,African American,of African descent,or of mixed race

Scant research has explored the healthcare experiences of people with Down syndrome (DS) in the United States who are Black, African American, of African descent, or of mixed race. The purpose of this study was to identify and describe the barriers and facilitators that such patients and their caregivers face when accessing healthcare. We gathered data in three ways: focus groups with caregivers, a national survey completed by caregivers, and in-depth interviews with primary care providers. Many caregivers and primary care physicians felt that patients with DS who are Black, African American, of African descent, or of mixed race receive a lower quality of medical care than their white counterparts with DS. Caregivers mentioned feeling tired of being reminded by the medical community about their race and wanting acknowledgment that raising a child with DS can be hard at times. Many felt that the medical community's conscious and unconscious racial biases do negatively impact the care of their loved ones with DS. Caregivers desired more race concordant medical providers or, when not possible, medical providers who are willing to learn more about DS and build trusted, longitudinal relationships. Primary care providers discussed the need for funded resources and support services to effectively care for their patients with DS.     

Burden of COVID-19 disease and vaccine coverages in Apulian splenectomized patients: A retrospective observational study

Splenectomy/asplenia is a condition associated with immune-compromission and specific vaccines are recommended for these patients, including the anti-COVID-19 vaccine. Among the high-risk group for which vaccination was prioritized in Italy, the immunocompromised patients after therapies or treatments were included. The Apulian regional archive of hospital discharge forms was used to define the list of splenectomized Apulian inhabitants, considering data from 2015 through 2020. The overall vaccination status of asplenic patients was assessed via data collected from the Regional Immunization Database. The history of SARS-CoV-2 infection and the infectious disease outcomes were extracted from the Italian Institute of Health platform “Integrated surveillance of COVID-19 cases in Italy”. 1219 Apulian splenectomized inhabitants were included; the incidence rate of SARS-CoV-2 infection was 15.0 per 100 persons-year with a proportion of re-infection equal to 6.4%; the proportion of hospitalization was 2.9%, with a case-fatality rate of 2.6%. The vaccine coverage (VC) for the anti-COVID-19 vaccine basal routine was 64.2%, for the first booster dose was 15.4%, and for the second booster dose was 0.6%. A multifactorial approach is needed to increase the vaccination uptake in this sub-group population and to increase the awareness of the asplenia-related risks to patients and health personnel.     

¿Podemos enseñar la «cadena de supervivencia» jugando? Validación de la herramienta «Rescube»

PurposeTo validate the content and adequacy of the «Rescube» training material that includes adapted information from the chain of survival.Material and methodsThe study included three steps: (i) material development by 7 experts, following Delphi method; (ii) assessment of training material by 11 experts by means of a Likert score and calculation of content validity; and (iii) pilot study in two groups of 5 to 8 years-old: Rescube group (GR; n = 60) and Traditional group (GT; n = 60). GR was trained with Rescube and a Teddy bear, while GT was traditionally trained with a pediatric manikin. Participants were individually assessed at baseline, and one week and one month after training.ResultsAll content validity indexes calculated are above the recommended cut-off for analysis with more than 9 experts (≥ 0,80). Children's learning results were positive, with percentages equal or higher than 80% in all registered variables at the first (one week) evaluation and equal or higher than 67% when evaluated one month after training. No significant differences were detected between groups.ConclusionThe Rescube training tool based on infantile pictures is valid and useful to train young schoolchildren in the chain of survival.