Storytelling to support legacy making for bereaved parents of children with cancer.

Honoring a child's legacy is an essential aspect of meaning-making for bereaved parents, yet little is known about storytelling as a mechanism. Through narrative analysis of 19 bereaved parent interviews focused on legacy, we examined the role of storytelling in creating and sustaining legacy. Most participants (89%) told stories centered around the child's impact and parent's coping, including the child's character and interpersonal relationships during and after their lifetime as well as how the child's legacy influenced parents' grief experiences. Future research is needed to explore the potential impact of storytelling initiatives to support legacy-making for bereaved caregivers.

Narrative medicine interventions for oncology clinicians: a systematic review.

PURPOSE: As narrative medicine interventions are integrated increasingly into medical practice, growing evidence indicates benefits for healthcare professionals. Presently, the prevalence and impact of narrative medicine interventions in the field of oncology remain unknown. This systematic review synthesizes published data on narrative medicine interventions in oncology and reports current knowledge on feasibility, acceptability, and impact on cancer care professionals. METHODS: Following PRISMA guidelines, we searched Ovid Medline, Embase, Scopus, Web of Science, Cochrane, and ClinicalTrials.gov databases from inception through February 2024. Eligible articles were published in English and contained original data on feasibility, acceptability, and/or impact of a narrative medicine intervention for oncology professionals. Database searches identified 2614 deduplicated articles, from which 50 articles were identified for full-text assessment and 11 articles met inclusion criteria. Two additional articles were identified through manual review of references. RESULTS: Thirteen articles described 12 unique narrative medicine interventions targeting cancer care professionals. All studies described their respective interventions as feasible, acceptable, and impactful for participants. Interventions involved writing, reading, reflection, and other narrative-based strategies. Standardized validated tools evaluated outcomes including burnout, empathy expression, secondary trauma, quality of humanistic care, and well-being. Participants reported appreciation of opportunities for reflection, perspective sharing, and bearing witness, which they perceived to strengthen wellness and community. CONCLUSION: Narrative medicine interventions are feasible and acceptable and may bolster oncology clinicians' functioning across domains. Multi-site, prospective, randomized studies are needed to investigate the broader impact of narrative medicine interventions and advance the science of narrative medicine in oncology. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: CRD42022369432.

Palliative care is not associated with decreased intensity of care: Results of a chart review from a large children's hospital.

BACKGROUND: Palliative care is an important component of pediatric oncology care, especially for children who will not be cured of their disease. However, barriers remain to integration of this service. One barrier is the perception that it indicates "giving up." This study examined if palliative care involvement was associated with a decreased intensity of care at the end of life for children with malignancy at a large academic center with a well-established palliative care program. PROCEDURE: This is a retrospective chart review that measured intensity of care as the number of emergency department visits, hospital days, and intensive care unit days in the last one and three months of life. The data were compared for patients with and without palliative care involvement and with and without hospice involvement. RESULTS: Palliative involvement was not associated with a decrease in the intensity of care in the last three months of life. Hospice care was associated with a decreased intensity of care. These results held true in analyses adjusted for age at death, gender, and type of malignancy. CONCLUSIONS: These data can reassure patients, families, and providers that palliative involvement does not necessitate decreased intensity of care. Patients and families often choose hospice care to decrease the amount of time spent at the hospital and it was associated with meeting that goal.

I Spy.

In this narrative medicine essay, a pediatric oncology fellow who weaves storytelling into her practice to help patients process their illness describes how a young boy's mother captures his story through photography.

Narrative Medicine in Hospice and Palliative Care: A Longitudinal Fellowship Curriculum Pilot.

INTRODUCTION: Growing evidence suggests that clinician exposure to narrative medicine (NM) may help bolster resilience and mitigate burnout. The value of formal longitudinal training in NM for hospice and palliative medicine (HPM) trainees remains understudied. METHODS: A 1-year longitudinal NM curriculum for HPM fellows was pilot-tested for feasibility, acceptability, and exploratory impact. Six monthly 45-minute sessions included reading literature, reflective writing, and sharing creative work. Quantitative and qualitative data were collected through a pre-intervention survey and post-intervention survey administered immediately upon completion of the curriculum. Longitudinal impact was assessed with a post-intervention survey administered three months after completion of the curriculum. RESULTS: All HPM fellows (n = 6) attended at least 5/6 sessions during the 1-year pilot, suggesting intervention feasibility. Participant engagement and self-reported comfort with NM exercises supported intervention acceptability. Post-intervention, participants described the positive influence of NM practice on their clinical practice and stated an intention to integrate NM skills in their future HPM careers. Three months following the intervention, participants had a sustained increase in their comfort level with NM. All participants felt that the NM sessions had been relevant to their life as HPM fellows and anticipated using NM moving forward in their practice of HPM. DISCUSSION: This novel NM curriculum was feasible and acceptable to implement in a 1-year HPM fellowship. Longitudinal impact showed sustained increase in trainee comfort and interest in using NM in their future clinical practice.

Longitudinal Impact of a Novel Condolence Expression Curriculum.

Background: Pediatric residents lack training in expressing condolences to bereaved families after a child's death. We previously developed a novel curriculum that improved residents' comfort with expressing condolences, and now we report assessment of the longitudinal impact of this curriculum on residents' practices of condolence expression. Methods: We applied Kern's 6-step approach to develop, implement, and evaluate a condolence expression curriculum. Residents completed surveys before, immediately after, and six months after participating in the educational intervention to assess curricular impact over time. Results: Twenty pediatric residents participated in the curriculum. Residents reported an increase in their practice of expressing condolences following participation in the curriculum, as well as appreciation for the value of the intervention. Conclusion: A condolence expression curriculum has potential to increase residents' practice of condolence expression to bereaved families over time. Future work will focus on the impact of curricular dissemination across pediatric residency programs.

Skipping breakfast and its association with sociodemographic characteristics, night eating syndrome, and sleep quality among university students in Bangladesh.

INTRODUCTION: Skipping breakfast has become more common, and it can significantly affect a person's health, performance, mood, and other physiological and psychological factors. In Bangladesh, university students often encounter unhealthy dietary habits, which raises questions about why many university students choose to skip breakfast. The purpose of this study was to investigate the prevalence of skipping breakfast among university students in Bangladesh and explore the contributing factors. METHODS: Patuakhali Science and Technology University, Bangladesh was the location of this cross-sectional study. Breakfast consumption was measured with the single-question item, "How often do you eat breakfast?" (Almost every day, sometimes, rarely, or never). Skipping breakfast was classified as respondents selecting sometimes, rarely, or never having breakfast. Sociodemographic, behavioral, and sleep-related data were collected as key predictor variables. Multiple logistic regression models identified factors associated with skipping breakfast. RESULTS: The prevalence of skipping breakfast among study participants (N = 502, 51.6% female and mean age 21.31 years) was 63.5%. Female students were more likely to skip breakfast compared to male students (adjusted odds ratio, AOR = 1.65, 95% CI: 1.06-2.55). Smoker participants had a higher likelihood of skipping breakfast compared to non-smokers (AOR = 3.92, 95% CI: 1.57-9.78). Students with night eating syndrome had a higher likelihood of skipping breakfast compared to their counterparts (AOR = 1.84, 95% CI: 1.06-3.22). Students with poor sleep quality were three times more likely to skip breakfast than their counterparts (AOR = 2.95, 95% CI: 1.93-4.51). Overweight/obese students were less likely to skip breakfast compared to their counterparts (AOR = 0.40, 95% CI: 0.20-0.82). CONCLUSION: This study highlights a high prevalence of skipping breakfast among university students in Bangladesh. Specifically, students who are females, smokers, poor sleepers and who have night eating syndrome are more likely to skip breakfast compared to their counterparts. These findings underscore a need for targeted interventions and educational programs to promote healthy breakfast habits. Addressing these modifiable risk factors can have a positive impact on students' nutritional practices and their health and wellbeing.

The strength of our stories: a qualitative analysis of a multi-institutional GME storytelling event.

Context: Storytelling is a powerful tool for encouraging reflection and connection among both speakers and listeners. While growing in popularity, studying the benefits of formal oral storytelling events within graduate medical education remains rare. Our research question was: could an oral storytelling event for GME trainees and faculty be an effective approach for promoting well-being and resilience among participants?Methods: We used multiple approaches to gather perspectives from physician participants (storytellers and audience members) at an annual oral storytelling event for residents, fellows, and faculty from seven academic health systems in Minnesota. Data sources included short reflections written by participants during the event, an immediate post-event survey exploring participants' experiences during the event, social media postings, and targeted follow-up interviews further exploring the themes of connection and burnout that were raised in post-event survey responses. We performed a qualitative analysis using both deductive and inductive coding to identify themes.Results: There were 334 participants, including 197 physicians. At the event, 129 real-time written reflections were collected. There were also 33 Twitter posts related to the event. Response rate for the post-event survey was 65% for physicians, with 63% of physician respondents volunteering for targeted follow-up interviews. Of those, 38% completed the follow-up interview. Themes that emerged from the multi-modal qualitative analysis included a sense of connection and community, re-connection with meaning and purpose in work, renewal and hope, gratitude, and potential impact on burnout.Conclusion: The large turnout and themes identified show how an oral storytelling event can be a powerful tool to build community in graduate medical education. Qualitative analysis from multiple sources obtained both in real-time at the event and upon deeper reflection afterwards showed the event positively impacted the well-being of participants and that oral storytelling events can be an effective approach for promoting resilience in GME.

Terrible twos.

Presents a brief story about the drowning death of a two year old child, the grief of the parents, and subsequent organ donation. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents.

BACKGROUND: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. METHODS: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. RESULTS: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P = .002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. CONCLUSIONS: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.

Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study.

BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time. METHODS: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child's life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient. RESULTS: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services. CONCLUSION: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.

The use of an online comment system in clinical ethics consultation.

BACKGROUND: Although a mechanism for resolving ethical issues in patient care is required for accreditation of American hospitals, there are no formal qualifications for providing clinical ethics consultation (CEC), and there remains great variability in the composition of ethics committees and consult services. Consequently, the quality of CEC also varies depending on the qualifications of those performing CEC services and the format of CEC utilized at an institution. Our institution implemented an online CEC comment system to build upon existing practices to promote consistency and broad consensus in CEC services and enable quality assurance. METHODS: This qualitative study explored the use of an online comment system in ethics consultation and its impact on consensus building and quality assurance. All adult ethics consultations recorded between January 2011 and May 2015 (n = 159) were analyzed for themes using both open and directed coding methods. RESULTS: We found that comments broadly reflected three categories: expressions of approval/agreement (87% of consults), comments about the case (89%), and comments about the written record (72%). More than one-third of consults included responses to other comments (37%). The most common types of "comments about the case" included requests for additional information (36%), recommendations for additional services (21%), and references to formal policies/standards (28%). Comments often spanned multiple categories and themes. Comments about the written record emphasized accessibility, clarity, and specificity in ethics consultation communication. CONCLUSIONS: We find the online system allows for broad committee participation in consultations and helps improve the quality of CEC provided by allowing for substantive discussion and consensus building. Further, we find the use of an online comment system and subsequent records can serve as an educational tool for students, trainees, and ethics committee members.