Background: The COVID-19 pandemic has significantly altered the lives of pediatric oncology social workers. Challenges include difficulty building rapport with the use of telephone/computers, lack of ...clarity around who is designated as “essential”, structural challenges, isolation, and witnessing distress. This study aimed to describe the ways that the pandemic has personally impacted pediatric oncology social workers. Methods: Participants were recruited through the Association of Pediatric Oncology Social Workers (APOSW) listserv. In total, 101 participants from 31 states and the District of Columbia completed an online survey containing quantitative and open-ended questions. Qualitative data analysis included thematic analysis of participants’ optional survey responses to three open-ended questions. Results: Fifty-seven of the participants provided responses that revealed 3 first level codes and 11 second level codes. First level codes were developed a priori from the questions: Experiences that stay with you, Wisdom gained and Impact on your work. Pandemic-related challenges caused moral suffering and professional challenges for participants but also created opportunities to find meaning in their work. Conclusion: Data illuminated moral suffering, unrecognized resilience, new ways of maintaining self-and family care, and creative approaches to care of children with cancer and their families at diagnosis, during treatments and at the end of life.
The Children's Oncology Group (COG) strongly supports the widely recognized principle that research participants should be offered a summary of study results. The mechanism by which to do so in a ...cooperative research group setting has not been previously described.
On the basis of a review of the available empirical and theoretic literature and on iterative, multidisciplinary discussion, a COG Return of Results Task Force (RRTF) offered detailed recommendations for the return of results to research study participants.
The RRTF established guidelines for the notification of research participants and/or their parents/guardians about the availability of research results, a mechanism for and timing of sharing results via registration on the COG public Web site, the scope of the research to be shared, the target audience, and a process for creating and vetting lay summaries of study results. The RRTF recognized the challenges in adequately conveying complex scientific results to audiences with varying levels of health literacy and recommended that particularly sensitive or complex results be returned using direct personal contact. The RRTF also recommended evaluation of the cost, effectiveness, and impact of sharing results.
These recommendations provide a framework for the offering and returning of results to participants. They can be used by individual investigators, multi-investigator research collaboratives, and large cooperative groups.
Abstract Hematopoietic cell transplantation (HCT) is an important curative treatment for children with high-risk hematologic malignancies, solid tumors, and, increasingly, nonmalignant diseases. ...Given improvements in care, there are a growing number of long-term survivors of pediatric HCT. Compared with childhood cancer survivors who did not undergo transplantation, HCT survivors have a substantially increased burden of serious chronic conditions and impairments involving virtually every organ system and overall quality of life. This likely reflects the joint contributions of pretransplantation treatment exposures and organ dysfunction, the transplantation conditioning regimen, and any post-transplantation graft-versus-host disease (GVHD). In response, the Children's Oncology Group (COG) has created long-term follow-up guidelines ( www.survivorshipguidelines.org ) for survivors of childhood, adolescent, and young adult cancer, including those who were treated with HCT. Guideline task forces, consisting of HCT specialists, other pediatric oncologists, radiation oncologists, organ-specific subspecialists, nurses, social workers, other health care professionals, and patient advocates systematically reviewed the literature with regards to late effects after childhood cancer and HCT since 2002, with the most recent review completed in 2013. For the most recent review cycle, over 800 articles from the medical literature relevant to childhood cancer and HCT survivorship were reviewed, including 586 original research articles. Provided herein is an organ system–based overview that emphasizes the most relevant COG recommendations (with accompanying evidence grade) for the long-term follow-up care of childhood HCT survivors (regardless of current age) based on a rigorous review of the available evidence. These recommendations cover both autologous and allogeneic HCT survivors, those who underwent transplantation for nonmalignant diseases, and those with a history of chronic GVHD.
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).
Cross-sectional online ...survey on APOSW professional listserv from 10/5/2020 to 11/20/2020.
101 surveys were completed by POSW from 31 states and the District of Columbia.
Data were summarized descriptively and with semantic content analyses.
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.
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.
COVID-19 vastly impacted the personal and professional lives of POSW, warranting attentiveness to lessons learned and future directions.
Fifteen evidence‐based Standards of psychosocial care for children with cancer and their families have been established. Despite the importance of implementing the standards, significant barriers and ...challenges exist. In order to overcome barriers to implementation and assess the level of current psychosocial care, a model of evaluating psychosocial care (Matrix) and a set of pathways toward achieving optimal care (Guidelines) were developed. This special report describes the process involved in the creation of standard templates and development of content based on rigorous reviews from multidisciplinary psychosocial experts, focus groups, and multiple revisions based on further expert review. The resulting Matrix and Guidelines are included as Supplemental Information.
In 2015, an interdisciplinary group of psychosocial experts developed The Standards of Psychosocial Care for Children with Cancer and Their Families. This paper presents data from a national survey ...of pediatric oncology social workers and their experiences in delivering psychosocial care to children and families. In total, 107 social workers from 81 cancer institutions participated in a 25-item online survey that mirrored the 15 Standards for Psychosocial Care. Both closed and open-ended questions were included.
Social work participants reported that psychosocial support is being provided at most cancer centers surveyed, primarily by social workers and child life specialists, addressing adaptation to the cancer diagnosis, treatment, and transitions into survivorship or end-of-life care and bereavement. While social workers reported offering comprehensive services throughout the cancer trajectory, many of the 2015 Standards are not being systematically implemented. Areas for improvement include funding for psychosocial support staff and programs, incorporation of standardized assessment measures, assessment for financial burden throughout treatment and beyond, consistent access to psychology and psychiatry, integrated care for parents and siblings, and more inclusion of palliative care services from time of diagnosis.
Rudeness is routinely experienced by medical teams. We sought to explore the impact of rudeness on medical teams' performance and test interventions that might mitigate its negative consequences.
...Thirty-nine NICU teams participated in a training workshop including simulations of acute care of term and preterm newborns. In each workshop, 2 teams were randomly assigned to either an exposure to rudeness (in which the comments of the patient's mother included rude statements completely unrelated to the teams' performance) or control (neutral comments) condition, and 2 additional teams were assigned to rudeness with either a preventative (cognitive bias modification CBM) or therapeutic (narrative) intervention. Simulation sessions were evaluated by 2 independent judges, blind to team exposure, who used structured questionnaires to assess team performance.
Rudeness had adverse consequences not only on diagnostic and intervention parameters (mean therapeutic score 3.81 ± 0.36 vs 4.31 ± 0.35 in controls, P < .01), but also on team processes (such as information and workload sharing, helping and communication) central to patient care (mean teamwork score 4.04 ± 0.34 vs 4.43 ± 0.37, P < .05). CBM mitigated most of these adverse effects of rudeness, but the postexposure narrative intervention had no significant effect.
Rudeness has robust, deleterious effects on the performance of medical teams. Moreover, exposure to rudeness debilitated the very collaborative mechanisms recognized as essential for patient care and safety. Interventions focusing on teaching medical professionals to implicitly avoid cognitive distraction such as CBM may offer a means to mitigate the adverse consequences of behaviors that, unfortunately, cannot be prevented.
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