RESUMO
BACKGROUND: The COVID-19 pandemic introduced challenges to families with young children with developmental delays. Beyond the widespread concerns surrounding illness, loss of employment and social isolation, caregivers are responsible for overseeing their children's educational and therapeutic programmes at home often without the much needed support of professionals. METHOD: The present study sought to examine the impact of COVID-19 in 77 ethnically, linguistically and socioeconomically diverse families with young children with intellectual and developmental disabilities (IDDs) in California and Oregon, who were participating in larger intervention studies. Parents responded to five interview questions about the impact of the pandemic, services for their child, silver linings or positive aspects, coping and their concerns about the long-term impact of the pandemic. RESULTS: Parents reported that their biggest challenge was being at home caring for their children with the loss of many essential services. Parents reported some positive aspects of the pandemic, especially being together as a family. Although there were positive aspects of the situation, many parents expressed concern about long-term impacts of the pandemic on their children's development, given the loss of services, education and social engagement opportunities. CONCLUSION: Results suggest that parents of young children with IDD report significant challenges at home during the pandemic. Professional support, especially during the reopening phases, will be critical to support family well-being and child developmental outcomes.
Assuntos
Infecções por Coronavirus , Deficiências do Desenvolvimento/enfermagem , Família , Acessibilidade aos Serviços de Saúde , Deficiência Intelectual/enfermagem , Pandemias , Pneumonia Viral , Adulto , COVID-19 , California/etnologia , Criança , Pré-Escolar , Família/etnologia , Família/psicologia , Feminino , Humanos , Masculino , Oregon/etnologia , PaisRESUMO
A 44-year-old woman who had end-stage kidney disease from diabetes and hypertension underwent a deceased donor kidney transplantation. Eighteen months after the transplantation she developed an abrupt increase in her creatinine level and a kidney biopsy specimen showed the presence of a plasma cell-rich infiltrate. A vast majority of the plasma cells were kappa (κ) light chain restricted on in situ hybridization. κ and lambda (λ) free light chain were elevated in her serum and so was the κ/λ ratio. A bone marrow biopsy specimen showed no evidence of clonal plasmacytosis. A positron emission tomography (PET) scan showed hypermetabolic activity confined to the kidney. Prior to transplantation she was Epstein-Barr virus (EBV) immunoglobulin (Ig)G-negative but had detectable EBV based on polymerase chain reaction (PCR) in her blood during this episode. Despite reduction in immunosuppression there was no change in the κ/λ ratio and her renal function worsened. She underwent a transplant nephrectomy and her κ/λ ratio became normal. Twenty-one months later she is lymphoma-free and doing well on dialysis. Plasmacytoma-like post-transplantation lymphoproliferative disorder (PTLD) is rare and even more is the localization of the malignancy to the allograft. When reduction of immunosuppression is unsuccessful in treatment, removal of the organ may be necessary as is demonstrated in our case.