RESUMO
Background: The pediatric literature describes reliance on community-based organizations for home-based palliative and hospice care for children. Objective: To quantify and describe the inclusion of children in services, staffing, and care scope offered by community-based hospice organizations in the United States. Design and Subjects: This study utilized an online survey distributed to organizational members of the National Hospice and Palliative Care Organization (NHPCO) in the United States. Results: A total of 481 hospice organizations from 50 states, Washington DC, and Puerto Rico responded. Twenty percent do not provide services for children. Nonmetro geographies are less likely to provide services for children. Pediatric services provided include home-based pediatric hospice (57%), home-based palliative care (31%), inpatient pediatric hospice (23%), and inpatient pediatric palliative care (14%). Hospice annual pediatric census is an average of 16.5 children, while palliative care annual census is an average of 36. Less than half (48%) of responding agencies have a team that is dedicated to only pediatric care. Medicaid and the Children's Health Insurance Program are the most common forms of reimbursement, with 13% depicting "no reimbursement" for provision of care for children and many relying on philanthropy coverage. Lack of trained personnel, discomfort, and competing priorities were depicted as the most common barriers. Conclusions: Children remain underrepresented in the extension of care offered through community-based hospice organizations in the United States particularly in nonmetro settings. Further research into strong training, staffing, and reimbursement models is warranted.
Assuntos
Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Criança , Humanos , Estados Unidos , Serviços de Saúde Comunitária , Cuidados PaliativosRESUMO
Volunteers who are deployed during times of disaster are critical public health system assets. These individuals share concerns about a variety of subjects with public health law implications, including whether they are entitled to employment benefits before, during, and after disaster response. We examined and analyzed state employment benefit laws pertaining to emergency response volunteers. We used the Emergency Law Inventory (ELI; https://legalinventory.pitt.edu )-an informatics tool developed at the University of Pittsburgh Graduate School of Public Health that contains more than 1300 statutory and regulatory provisions affecting volunteer activities-to access certain employment laws in 60 jurisdictions. Analyses of the laws revealed that fewer than half of the jurisdictions have laws that protect seniority, vacation time, sick time, or overtime privileges. Additionally, there is tremendous variance and lack of uniformity among the jurisdictions concerning employment status requirements, geographic constraints, time limitations, and economic impacts. Major disasters often necessitate interjurisdictional response. To facilitate effective deployment of volunteers, employment laws should be uniform across the states. Furthermore, limitations that impede volunteer responders should be eliminated.