Purpose: Describe the impact of the COVID-19 pandemic on the work structure, daily care provided, personal lives, and practice models for pediatric oncology social workers (POSW). Research Approach: Cross-sectional online survey on APOSW professional listserv from 10/5/2020 to 11/20/2020. Sample: 101 surveys were completed by POSW from 31 states and the District of Columbia. Methods: Data were summarized descriptively and with semantic content analyses. Findings: Surveys were completed by social workers from diverse work settings. Seventy-five percent of social workers were deemed "essential," and 45% reported working primarily from home. Most (56%) adopted a form of telehealth for patient care, although 71% did not receive telehealth training and 87% perceived lesser quality of care with telehealth. Nearly 80% of respondents reported not being able to provide optimum psychosocial care. Notable stressors on social work practice included worry about exposure to COVID-19, limited resources, lack of contact with and increased emotional needs of patients and families, managing patient and family concerns about COVID-19, and isolation from colleagues. Inequity and social justice issues were identified. Despite challenges, over 60% of POSW endorsed positive changes to their work life resulting from the pandemic. Conclusions/Interpretation: As the COVID-19 pandemic persists, POSW have adapted to a changing work environment, different modes of service provision, and stark health inequities to meet the needs of patients and families in a crisis. Implications for Psychosocial Providers: COVID-19 vastly impacted the personal and professional lives of POSW, warranting attentiveness to lessons learned and future directions.
Objective Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC). Method The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs. Results A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic. Significance of results The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.
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