Debilitating landscapes of care and support: envisaging alternative futures

This paper explores the impact of policy changes and budget cuts on services and support faced by people with learning disabilities. Drawing upon collaborative research in England and Scotland and interviews with commissioners and support organisations, we show how landscapes of care and support are unstable and fragmented. We identify how pressures of time, resource and precaritisation in the workforce are creating ‘debilitating landscapes of care' that further erode the capacities of both the people that work in the sector and people with learning disabilities. Some challenges that people with learning disabilities face in this context include finding appropriate local support, narrowing access as a result of reductions in benefit entitlements and identifying quality providers amid a complex array of private and charitable provision. Capacity to cope with these challenges is contingent on access to quality advocacy, supportive family, friendships, productive occupational learning environments and peer support, but these are not always available. The impact of COVID-19 has only served to intensify some of the issues we identify and the urgent need for a response. Our analysis is inspired by Berlant's (2007) conception of ‘slow-death' and Puar's (2017) associated conceptualisation of ‘debility'. © 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

Epidemiology and Clinical Outcomes of SARS-CoV-2 Infection among Pediatric Solid Organ Transplant Recipients: A Single-Center Case Experience

Background. The impact of Severe Acute Respiratory Syndrome Coronavirus-2 (SARS-CoV-2) infection among pediatric solid organ transplant (SOT) recipients remains unclear. We sought to characterize the clinical epidemiology and outcomes following SARS-CoV-2 infection among pediatric SOT recipients in Dallas, TX. Methods. Retrospective review of all SOT recipients with laboratory confirmed COVID-19 infection from March 1, 2020 -March 31, 2021. Demographic, clinical, and outcome data were stratified by transplant type and disease severity. Fischer's exact test and Kruskall-Wallis test were used to evaluate risk factors for more severe disease among hospitalized children. Results. Twenty-six SOT recipients with a median age of 14 years were included in the study. Fifteen (58%) were female, eighteen (69%) were Hispanic and thirteen (50%) were overweight/obese. Median time post-transplant was 3.6 years (1311 days, interquartile range (IQR) 394-2881). Fourteen patients were liver recipients, seven kidney, three heart, and two multiorgan. The majority of patients (65%) had a known community exposure and presented with fever (50%), cough (38%) and GI symptoms (19%). Half of all cases were hospitalized (n=13), with 2 requiring intensive care unit (ICU) admission, but no patients required positive pressure ventilation. Median hospital stay was 3 days. Five of the thirteen hospitalized patients were categorized as having moderate disease. No patients developed severe disease and there were no deaths. Older children, as well as children with multiple co-morbidities were noted on univariate analysis to be at higher risk for moderate, as compared to mild, disease. Conclusion. SARS-CoV-2 infection among pediatric SOT recipients are at increased risk for hospital admission but demonstrate an overall mild /moderate disease course. Larger studies are required to elucidate the risk of morbidity between pediatric SOT recipients and immunocompetent children with SARS-CoV-2.

Lessons from covid-19 pandemic: Using telemedicine in ambulatory care delivery for pediatric heart failure and heart transplant patients

Introduction: COVID-19 related restrictions necessitated a rapid transition to telemedicine (TM) ambulatory services for pediatric heart failure (HF) and heart transplant (HT) patients. The impact on patient related outcomes remains unknown. We report the feasibility of incorporating TM in routine ambulatory care delivery to pediatric HF and HT patients at a large academic center during the COVID era (04/2020-04/2021). Methods and Results: A total of 650 HF patients, median age 10 (0-25) years and 200 HT recipients, median age 10 (0-22) years were followed at our center during the COVID era. A centerspecific, risk stratified model based on patient characteristics (Table 1) and local COVID restrictions were used to determine patient eligibility for TM only, TM + in-person (IP) or IP care only. There were 2 unexpected deaths in the HT and 0 deaths in the HF patients during the COVID era compared to 1 death in HT and 0 deaths in HF patients in the pre-COVID era (01/2019-12/2019). Both deaths in the COVID era were due to non-cardiac causes and neither patient utilized the TM platform for care. There was a significant decrease in emergency room use and unplanned hospital admissions during the COVID-19 era compared to pre-COVID era (Table 2, Fig 1). Conclusions: TM can safely be incorporated in routine ambulatory care delivery for appropriately selected pediatric patients with HF and HT.