BackgroundMost parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end‐of‐life communication and guidance for parents.MethodsCaregivers of a child who died from cancer were invited to complete a 46‐item survey through a closed social media (Facebook) group (“Parents who lost children to cancer”). In four months’ time, 131 bereaved caregivers completed the survey. Results were analyzed using descriptive statistics, chi‐square analyses, and a thematic content analysis framework. The mean age of the child at the time of death was 12.ResultsApproximately 40% of the parents in this study felt unprepared for both the medical problems their child faced and how to respond to their child's emotional needs; fewer than 10% felt very prepared for either. Parents were more likely to feel unprepared when perceived suffering was high, highlighting the critical importance of communication and support from the healthcare team as an adjunct to optimal symptom control.ConclusionsThrough quantitative and open‐ended responses, this study identified specific medical and emotional issues about which parents wanted greater preparation. Future research to evaluate guidance strategies to reduce parental suffering prior to the child's death is needed.
BackgroundEmergency department (ED) physicians and nurses frequently interact with emotionally evocative patients, which can impact clinical decision-making and behaviour. This study introduces well-established methods from social psychology to investigate ED providers’ reported emotional experiences and engagement in their own recent patient encounters, as well as perceived effects of emotion on patient care.MethodsNinety-four experienced ED providers (50 physicians and 44 nurses) vividly recalled and wrote about three recent patient encounters (qualitative data): one that elicited anger/frustration/irritation (angry encounter), one that elicited happiness/satisfaction/appreciation (positive encounter), and one with a patient with a mental health condition (mental health encounter). Providers rated their emotions and engagement in each encounter (quantitative data), and reported their perception of whether and how their emotions impacted their clinical decision-making and behaviour (qualitative data).ResultsProviders generated 282 encounter descriptions. Emotions reported in angry and mental health encounters were remarkably similar, highly negative, and associated with reports of low provider engagement compared with positive encounters. Providers reported their emotions influenced their clinical decision-making and behaviour most frequently in angry encounters, followed by mental health and then positive encounters. Emotions in angry and mental health encounters were associated with increased perceptions of patient safety risks; emotions in positive encounters were associated with perceptions of higher quality care.ConclusionsPositive and negative emotions can influence clinical decision-making and impact patient safety. Findings underscore the need for (1) education and training initiatives to promote awareness of emotional influences and to consider strategies for managing these influences, and (2) a comprehensive research agenda to facilitate discovery of evidence-based interventions to mitigate emotion-induced patient safety risks. The current work lays the foundation for testing novel interventions.
Experts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of care. Result The majority of participants (N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child's death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child's death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool. Significance of results Lack of routine assessment of bereavement needs, inconsistent duration of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.
OBJECTIVE
The novel coronavirus disease 2019 (COVID-19) pandemic has dramatically changed health care delivery and impacted health care providers. However, little is known about the impact of the pandemic in PICUs. In this qualitative study, we aimed to assess pediatric critical care providers’ perspectives on the impact of the COVID-19 pandemic on the experiences of patients and families in the PICU and on their personal and professional lives.
METHODS
Nineteen pediatric critical care and complex care attending physicians and nurse practitioners from a PICU in a tertiary, freestanding children’s hospital in the Midwest completed a semistructured, qualitative interview. Transcripts were analyzed by using thematic analysis.
RESULTS
For both PICU providers and patients and families, participants described a negative overall impact of the pandemic, especially relating to increased stress and fear of contracting the disease. Disease precautions such as visitor restrictions and restricting movement were reported to be particularly stressful for families because they limited coping strategies (eg, in-person social support). Providers described changes to the work environment, patient care, and their personal lives.
CONCLUSIONS
Results elucidate the perceived impacts of COVID-19 and associated hospital precautions on the lives of PICU providers, patients, and families. Providers, patients, and families likely require additional psychosocial support during the pandemic. When possible, policies regarding disease management should maximize safety while minimizing additional stress. Further research is needed to explore patient and family perspectives regarding the impact of COVID-19 and to evaluate the continued impact of COVID-19 over time.
Yet involving bereaved parents in research that explores such a stressful time in their life can potentially bring increased risk. Current literature is limited in its understanding of how bereaved parents perceive the benefit and burden associated with participation in research about their child's endof-life (EoL) experience (
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