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.

Building clinician-parent partnerships to improve care for chronically critically Ill children: A pilot project.

OBJECTIVE: Multicenter pilot to assess feasibility, acceptability, and educational value of videos for families and clinicians regarding unique inpatient challenges of pediatric chronic critical illness. METHODS: Videos were developed for 3 hospitalization timepoints: 1) chronic critical illness diagnosis, 2) transfers, 3) discharge. Parents of hospitalized children, and interdisciplinary clinicians, were recruited to watch videos and complete surveys. RESULTS: 33 parents (16 English-speaking, 17 Spanish-speaking) and 34 clinicians participated. Enrollment was better for families than clinicians (78% vs. 43%). Video acceptability was high: families and clinicians endorsed verisimilitude of depicted hospitalization challenges for chronic critical illness. All families felt the videos would help other families, all clinicians felt they would help other clinicians. Families gained expectations for the hospital course, discovered resources for hospitalization challenges, and learned there are other families in similar situations. Clinicians learned to recognize chronic critical illness, and how families experience hospitalizations, transfers, and discharges. CONCLUSION: Educational videos about pediatric chronic critical illness were overall feasible, acceptable, and educational for hospitalized families and clinicians. PRACTICE IMPLICATIONS: Just-in-time hospital education about pediatric chronic critical illness is valuable to families and clinicians; next steps are to assess potential to reduce gaps in care of children with chronic critical illness.

Exploring the impact of pediatric short bowel syndrome on parent well-being using a disease-specific pilot survey.

BACKGROUND: Children with short bowel syndrome (SBS) have complex care needs, most of which are met in the home by family caregivers who may experience a range of stressors unique to this experience. Prior research suggests that parents of children with SBS have poorer health-related quality of life than peers parenting children without health needs, but the mechanisms shaping parent outcomes are understudied. METHODS: A pilot survey was developed using a community-driven research design to measure the impact of disease-specific items on parent-perceived well-being. The cross-sectional survey, which included both closed-ended and open-ended items, was distributed to a convenience sample of parents of children with SBS. Quantitative and qualitative data were integrated for a mixed-methods analysis of how individual items impacted parent well-being. RESULTS: Twenty parents completed the survey. Sleep interruptions, lack of support and resources, and psychological stressors and their mental health implications were more frequently reported as stressors than logistics related to caregiving (e.g., managing therapies and preparing specialized meals). CONCLUSION: The impact of a child's SBS on parent well-being may stem mainly from three interconnected domains: poor sleep and its consequences, lack of access to support and resources, and a range of psychological stressors that affect parent mental health. Understanding the mechanisms through which SBS shapes parent well-being is a necessary first step for developing targeted interventions to support parents and provide family-centered care.

How young adults with sickle cell disease define "being a good patient" in the adult healthcare system.

BACKGROUND: Young adulthood brings new challenges for managing sickle cell disease. There are fewer adult specialists, sickle cell disease morbidities accumulate, and mortality increases. Developmental changes in roles and responsibilities also affect management. This study explores how young adults with sickle cell disease experience their role as a patient. METHODS: In this mixed-methods study at a sickle cell center, young adult participants completed the Sickle Cell Self Efficacy Survey, the Measures of Sickle Cell Stigma, and the Adult Sickle Cell Quality of Life Measurement Short-Forms. Semi-structured interviews on the patient role were conducted, transcribed, and then analyzed using thematic analysis. RESULTS: Twenty-four participants aged 19-25 years defined expectations of being a "good patient." Five definitional themes emerged: health maintenance, emotion regulation, self-advocacy, honest communication, and empathy for clinicians. Participants identified support from families and clinicians are important facilitators of role fulfillment. DISCUSSION: How young adult patients with sickle cell disease define being a "good patient" has implications for the transition of care for both pediatric and adult medicine practices. This understanding can inform healthcare system designs and programs aimed at supporting patients and families.

How we approach sharing child-caregiver PRO disagreement.

Researchers use patient-reported outcomes (PRO) to capture the patient experience, and in pediatrics, parent report of symptom and function often accompanies the child's assessment. Children with cancer and their family caregivers frequently evaluate symptom burden and functional status differently. Child-caregiver PRO disagreement often worries pediatric oncology clinicians, who do not know how to best approach sharing it with families. Openly discussing differences in symptom and functional status reporting is a crucial element of supporting families and can improve family harmony throughout the child's illness journey. This paper offers strategies and language for communicating with families about PRO disagreement.

Supporting the Family After the Death of a Child or Adolescent.

Whether death occurs in the context of a chronic illness or as the sudden loss of a previously healthy infant, child, or adolescent, the death of a child is a highly stressful and traumatic event. Psychosocial support for families after the death of a child embodies core medical values of professional fidelity, compassion, respect for human dignity, and promotion of the best interests of a grieving family. The pediatrician has an important role in supporting the family unit after the death of a child through a family-centered, culturally humble, trauma-informed approach. This clinical report aims to provide the pediatrician with a review of the current evidence on grief, bereavement, and mourning after the loss of a child and with practical guidance to support family caregivers, siblings, and the child's community. Pediatricians have an important role in helping siblings and helping families understand sibling needs during grief. Ways for pediatricians to support family members with cultural sensitivity are suggested and other helpful resources in the community are described.

Understanding Adult Hospices Caring for Children in California, 2018-2021.

In areas where there are absences of pediatric hospice care, adult hospices are often asked to provide hospice care for children. Little is known about these adult hospices. The purpose of our study was to describe the characteristics of adult hospices in California that provided care to children from 2018 to 2021. Using public data from the California Home Health Agencies and Hospice Annual Utilization Report, we conducted a longitudinal, retrospective descriptive study to examine the effects of hospice characteristics on adult hospices which provide care to children. Market, mission, operational, and financial characteristics were measured via the California utilization data using descriptive statistics. Service area was measured via latitude and longitude public data. Hospice location maps were generated for year 2018 and year 2021. The 148 hospices in the study had distinct organizational profiles, mainly small, with broad service coverage areas, in rural and urban communities with predominantly nurses visiting children. There was a significant decline (32%) in availability of adult hospices caring for children between 2018 and 2021, particularly in northern California. Hospice economics, lack of familiarity with Medicaid, and staff comfortability with caring for children in hospice, were not driving this decline. Our study provides critical insight into the characteristics of adult hospices in California providing care for children and has important policy implications.

Adherence to the AAP's Institutional Ethics Committee Policy Recommendations.

OBJECTIVES: In 2019, the American Academy of Pediatrics (AAP) outlined 8 operational recommendations for pediatric institutional ethics committees (IECs). The study purpose was to quantify the extent to which pediatric IECs adhere to the AAP IEC Policy Statement recommendations. METHODS: A convenience sample of ethics points of contact from Children's Hospital Association membership were invited to complete an electronic survey on their ethics programs and practices in spring 2022. Nineteen survey questions were preidentified as reflecting measures specific to best practice standards previously published by the AAP. This subset of questions was analyzed using frequencies and categorized to assess for adherence to the AAP IEC policy recommendations. RESULTS: A total of 117 out of 181 surveys were completed (65%). Stark IEC practice gaps include: lack of diversity of membership, training needs to maintain members' competencies, quality improvement within the organization, and scope of ethics service. Over one-quarter of IECs do not have a systematic way of informing hospital staff about ethics consultancy services and how to place an ethics consult. Nineteen percent of responding IEC services do not inform patients or families about the existence of ethics consult services. One-third of responding children's hospitals do not provide resources for the IECs to engage in ethics education at the facility. CONCLUSIONS: IECs in children's hospitals are not consistently abiding by operational recommendations. Next steps should include assessment of recommendation barriers and enablers with a goal of enhancing strong practices across IECs in children's hospitals.

State of the Service: Pediatric Palliative and Hospice Community-Based Service Coverage in the United States.

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.

Requests for Directed Blood Donations.

This Ethics Rounds presents a request for directed blood donation. Two parents feel helpless in the setting of their daughter's new leukemia diagnosis and want to directly help their child by providing their own blood for a transfusion. They express hesitancy about trusting the safety of a stranger's blood. Commentators assess this case in the setting of blood as a scarce community resource during a national blood shortage. Commentators review the child's best interest, future risks, and harm-benefit considerations. Commentators recognize the professional integrity, humility, and courage of the physician to admit his own lack of knowledge on the subject and to seek help rather than claim directed donation is not possible without further investigation into options. Shared ideals such as altruism, trust, equity, volunteerism, and solidarity are recognized as values relevant to sustainment of a community blood supply. Pediatric hematologists, a blood bank director, transfusion medicine specialists, and an ethicist conclude that directed donation is only justified by lower risks to the recipient in particular circumstances.

Pediatric Ethics Consultation Services.

BACKGROUND AND OBJECTIVE: Although guidelines call for the presence of pediatric ethics consultation services (PECS), their existence in children's hospitals remains unquantified. This study determined the prevalence of PECS in children's hospitals and compared the practice environments of those with versus without PECS. METHOD: The Children's Hospital Association Annual Benchmark Report survey from 2020 and PECS data were analyzed for the association of PECS with domains of care. RESULTS: Two hundred thirty-one hospitals received survey requests, with 148 submitted and 144 reachable to determine PECS (62% response rate), inclusive of 50 states. Ninety-nine (69%) reported having ethics consultation services. Freestanding children's hospitals (28% of all hospitals) were more likely to report the presence of PECS (P <.001), making up 41% of hospitals with a PECS. The median number of staffed beds was 203 (25th quartile 119, 75th quartile 326) for those with PECS compared with 80 for those without (25th quartile 40, 75th quartile 121). Facilities with palliative care, higher trauma ratio, intensive care, and comprehensive programs were more likely to have PECS. Academic affiliation was associated with PECS presence (P <.001). Settings associated with skilled nursing facilities or long-term care programs were not more likely to have PECS. Hospitals designated as federally qualified health centers (P = .04) and accountable care organizations (P = .001) were more likely to have PECS. CONCLUSION: Although PECS function as formal means to clarify values and mitigate conflict, one-third of children's hospitals lack PECS. Future research is needed to understand barriers to PECS and improve its presence.

Pediatric Ethics Consultation Services, Scope, and Staffing.

BACKGROUND AND OBJECTIVES: National standards and guidelines call for a mechanism to address ethical concerns and conflicts in children's hospitals. The roles, responsibilities, and reach of pediatric ethics consultation services (PECS) remain unmeasured. The purpose of this study is to quantify staffing, structure, function, scope, training, and funding of PECS. METHODS: Cross-sectional online survey was shared with an ethics informant at 181 children's hospitals in the United States from March to June 2022. Data were summarized descriptively and with semantic content analyses. RESULTS: One hundred seventeen surveys were received from individual children's hospitals in 45 states and Washington DC (response rate 65%), with 104 qualifying for survey completion. Almost one-quarter of settings received 50 or more pediatric ethics consults in the past 12 months. On average, 7.4 people at each institution have responsibility for completing ethics consults. Estimated full-time equivalent salary support for ethics is on average 0.5 (range 0-3, median 0.25). One-third (33%) of facilities do not offer any salary support for ethics and three-quarters do not have an institutional budget for the ethics program. Clinical staff primarily initiate consults. End-of-life, benefits versus burdens of treatments, and staff moral distress were the most frequently consulted themes. Almost one-quarter (21%) of children's hospitals do not receive any consults from patients or families. CONLUSIONS: The findings from this study reveal wide variation in PECS practices and raise concern about the lack of financial support provided for PECS despite substantial workloads.

Demand and Supply: Association between Pediatric Ethics Consultation Volume and Protected Time for Ethics Work.

BACKGROUND: Despite national increase in pediatric ethics consultation volume over the past decade, protected time and resources for healthcare ethics consultancy work has lagged. METHODS: Correlation study investigating potential associations between ethics consult volume reported by recent national survey of consultants at children's hospitals and five programmatic domains. RESULTS: 104 children's hospitals in 45 states plus Washington DC were included. There was not a statistically significant association between pediatric ethics consult volume and hospital size, rurality of patient population, or number of consultants. Academically-affiliated children's hospitals had fewer ethics consults compared to nonacademically affiliated. Association was found between full-time equivalent (FTE) hours and number of ethics consults (p < 0.0001). Spearman rank correlation between ethics consult volume and FTE was 0.5. CONCLUSIONS: While the results of this study should be interpreted with caution, investment in protected time for ethics consultancy work may translate into increased volume of pediatric ethics consults.

Providing "Compassionate Care" in the Neonatal Intensive Care Unit Through Infant and Family Needs-Based Care.

OBJECTIVE: Provision of compassionate care to infants and their families in the neonatal intensive care unit (NICU) is a key component of competent critical care. Although recognized as an essential aspect of NICU care, compassionate care for infants and families in a NICU setting has been underexplored. This study defined and described compassionate care according to NICU staff. STUDY DESIGN: Voice-recorded, face-to-face individual interviews occurred with NICU nurses (n = 45), NICU nurse practitioners (n = 15), and neonatologists (n = 9) from two NICUs in the midwestern United States. Semantic content analysis was used. Consolidated criteria for Reporting Qualitative research guidelines were followed. RESULTS: Three dynamic and interactive qualitative themes emerged: excellent standard of intensive care, commitment, and engaged family communication. A conceptual framework entitled patient and family needs-based care was developed from the qualitative interviews. CONCLUSION: The framework developed from this study supports the therapeutic journey of NICU infants and families by integrating a focus on compassionate personalized care within the context of keen clinical and communication skillsets that staff have gained throughout their NICU careers. KEY POINTS: · While clinical competence is emphasized as a practice standard, compassion remains a core care value.. · A working definition of compassionate care and the description of its defining pillars has been underexplored.. · This study describes the perspectives of NICU staff on the actionable components of compassionate care for ill infant and their families..

Palliative Care Programs in Children's Hospitals.

BACKGROUNG AND OBJECTIVES: This study determined the prevalence of PPC programs in the United States and compared the environment of children's hospitals with and without PPC programs. METHODS: Analyses of the multicenter Children's Hospital Association Annual Benchmark Report 2020 survey for prevalence of PPC programs and association with operational, missional, educational, and financial domains. RESULTS: Two hundred thirty-one hospitals received Annual Benchmark Report survey requests with 148 submitted (64% response rate) inclusive of 50 states. One hundred nineteen (80%) reported having a PPC program and 29 (20%) reported not having a PPC program. Free-standing children's hospitals (n = 42 of 148, 28%) were more likely to report the presence of PPC (P = .004). For settings with PPC programs, the median number of staffed beds was 185 (25th quartile 119, 75th quartile 303) compared with 49 median number of staffed beds for those without PPC (25th quartile 30, 75th quartile 81). Facilities with higher ratio of trauma, intensive care, or acuity level were more likely to offer PPC. Although palliative care was associated with hospice (P <.001) and respite (P = .0098), over half of facilities reported not having access to hospice for children (n = 82 of 148, 55%) and 79% reported not having access to respite care (n = 117 of 148). CONCLUSIONS: PPC, hospice, and respite services remain unrealized for many children and families in the United States. Programmatic focus and advocacy efforts must emphasize creation and sustainability of quality PPC programs in smaller, lower resourced hospitals.