Household material hardship and distress among parents of children with advanced cancer: A report from the PediQUEST Response trial.

BACKGROUND: The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown and herein described. METHODS: Parents of children aged ≥2 years with advanced cancer at five cancer centers completed baseline surveys as part of the PediQUEST Response trial. HMH (housing, energy, and food) was operationalized as binary (≥1 HMH domains), ordinal (zero, one, or two or more HMH domains), and housing based (none, nonhousing [food and/or energy], only housing, or housing + other). Associations between HMH and parent distress measured by the State-Trait Anxiety Inventory-State and the 10-item Center for Epidemiologic Studies Depression Scale were estimated via linear models adjusting for confounders. RESULTS: Among 150 parents, 41% reported ≥1 HMH (housing, 28% [only housing, 8%; housing + other, 20%]; energy, 19%; food, 27%). HMH was more prevalent among Hispanic, other non-White race, Spanish-speaking, and single parents and those with lower education (associate degree or less) or who were uninsured/Medicaid-only insured. Parents endorsing HMH reported higher anxiety (mean difference [MD], 9.2 [95% CI, 3.7-14.7]) and depression (MD, 4.1 [95% CI, 1.7-6.5]) scores compared to those without HMH. Distress increased with the number of hardships, particularly housing insecurity. Specifically, parents experiencing housing hardship, alone or combined, reported higher distress (housing only: anxiety: MD, 10.2 [95% CI, 1.8-18.5]; depression: MD, 4.9 [95% CI, 1.3-8.6]; housing + other HMH: anxiety: MD, 12.0 [95% CI, 5.2-18.9]; depression: MD, 4.8 [95% CI, 1.8-7.8]). CONCLUSIONS: HMH is highly prevalent in pediatric advanced cancer, especially among historically marginalized families. Future research should investigate whether interventions targeting HMH, particularly housing stabilization efforts, can mitigate parent distress. PLAIN LANGUAGE SUMMARY: In our cohort of parents of children with advanced cancer, household material hardship (HMH) was highly prevalent and significantly associated with higher parent distress. Housing hardship was the primary driver of this association. Families of children with advanced cancer may benefit from systematic HMH screening as well as targeted HMH interventions, especially stabilizing housing.

Impact of the SARS-CoV-2 pandemic on pediatric subspecialists' well-being and perception of workplace value.

OBJECTIVE: To explore pediatric subspecialist distress and well-being during the pandemic, with a particular focus on relationships between compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS), and physicians' perception of "feeling valued" by their institution. METHODS: The Compassion Fatigue and Satisfaction Self-Test and a questionnaire of personal/professional characteristics were distributed electronically to pediatric subspecialists. Content analysis was performed for responses to the question "How has your institution made you feel valued?" RESULTS: During the 16-month study period, CF and BO scores significantly increased, and CS scores decreased over time. By Epoch 3, 52% of respondents did not feel valued by their employing institution. When controlling for the effect of time, CF and BO scores remained higher, and CS scores lower, in participants who did not feel valued by their institution. Themes from the content analysis of "value" included expressions of gratitude, perks vs. penalties, safety, and leadership. The same overture from leadership provoked disparate responses in recipients, seemingly over the sincerity behind the offering, which may reflect underlying workplace culture. CONCLUSIONS: Increasingly, pediatric subspecialists are not feeling valued for their work. Institutional leadership must prioritize healthy workplace culture, and re-think emotional and mental health support within the health system. IMPACT: A total of 52% of our study population did not "feel valued" by their employing institution by late 2021, which is cause for concern. This is the first longitudinal analysis of distress and well-being in a national cohort of pediatric subspecialists during the COVID-19 pandemic. The same overture or messaging from leadership sparked disparate responses in recipients, seemingly over the sincerity behind the offering, which relates to the underlying workplace culture of the department or institution. Institutional leadership must prioritize a healthy workplace culture, and re-think and re-invent emotional and mental health support within the health system.

Pediatric palliative care and surgery.

Care for pediatric patients with serious or potentially life-limiting illness involves the interplay of multiple medical and surgical teams within the hospital. Pediatric surgeons are capable of performing procedures that can improve the quality of life for children facing serious illness, but which also carry the potential for significant risk and burden. Patients and families are often faced with decisions about invasive surgical procedures and interventions, stressing the need for seamless collaboration between palliative care and surgical providers. Equally important is the need for clear and open-ended communication with patients and families by all medical teams to determine if potential surgical procedures and interventions align with their goals and to ensure that the perceived benefits of interventions outweigh any risks. Over the last two decades, pediatric palliative care has grown into a thriving medical subspecialty Despite the importance of collaborative care, there is lack of literature on the interaction of pediatric surgery and palliative care and the role of pediatric surgeons in providing primary palliative care. This review defines surgical pediatric palliative care, and provides an in-depth discussion of the unique complexities involved in caring for children with serious and potentially life-limiting illness, while highlighting specific challenges through detailed case presentations.

Compassion fatigue, burnout, and compassion satisfaction in pediatric subspecialists during the SARS-CoV-2 pandemic.

BACKGROUND: The aim of this study was to explore factors contributing to compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) during the severe acute respiratory syndrome coronavirus-2 pandemic in pediatric subspecialists. METHODS: The Compassion Fatigue and Satisfaction Self-Test (CFST) and a questionnaire of personal/professional characteristics were distributed electronically to pediatric subspecialists. RESULTS: There were no significant differences in pre- and early-pandemic CF, BO, and CS scores. Nearly 40% of respondents felt their contributions to the pandemic were not valued by their institutions. Higher CF scores were significantly associated with: higher BO score; "I have put myself at increased risk through my work"; working in one's specialty >50% of time; distress about mental health and/or future uncertainty. Higher BO scores were significantly associated with: higher CF score; "Self-care is not a priority"; emotional depletion. Higher CS scores were significantly associated with: "My institution values my contribution to the COVID-19 crisis"; workplace debriefs; pet therapy. CONCLUSIONS: The pandemic has only increased the need for physicians to receive social/emotional support from their institution and to feel their workplace contributions are valued. Successful pre-pandemic workplace interventions may not adequately support physicians during the pandemic. Further study is needed to identify supports that best counter the pandemic's unprecedented challenges. IMPACT: The sentiment "My institution has valued my contribution to the Covid-19 crisis" was the only significant factor associated with lower BO scores and was also associated with higher CS scores in pediatric subspecialists. This study is the first comparison of pre- and early-pandemic CF, BO, and CS scores in a national cohort of pediatric subspecialists. When considering interventions to promote CS and mitigate CF and BO for pediatric subspecialists during and after the pandemic, institutional leadership must offer wellness programming focused on social/emotional supports and prioritize a culture that explicitly recognizes and values every physician's contributions.

A pilot study exploring interventions for physician distress in pediatric subspecialists.

BACKGROUND: While institution-sponsored wellness programs may be effective, little is known about their availability and utilization in pediatric subspecialists, and about programs physicians wish were available. METHODS: A survey of perceptions about, and availability and utilization of institutional wellness activities, was distributed electronically to pediatric subspecialists nationally. Bivariate analyses were performed using χ2 tests or independent t tests. Multivariable logistic regression models for categories of institution-sponsored programming as a function of potential predictors of program utilization were performed. Qualitative content analysis was performed for free-text survey answers. RESULTS: Approximately 60% of respondents participated in institution-sponsored wellness opportunities. Debriefs, Schwartz Center Rounds, mental health services, and team building events were the most available institution-sponsored wellness activities, whereas debriefs, team building, Schwartz Center Rounds, and pet therapy were most frequently utilized. Respondents desired greater social/emotional support, improved leadership, enhanced organizational support, and modifications to the physical work environment, with no significant differences across subspecialties for "wish list" items. CONCLUSIONS: Physician wellness requires more than a "one-size-fits-all" initiative. Our data highlight the importance of encouraging and normalizing self-care practices, and of listening to what physicians articulate about their needs. Pre-implementation needs assessment allows a "bottom-up" approach where physician voices can be heard.

A Cross-sectional Analysis of Compassion Fatigue, Burnout, and Compassion Satisfaction in Pediatric Hematology-Oncology Physicians in the United States.

Compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) are interrelated phenomena that impact personal and professional performance. The CF and Satisfaction Self-Test and a demographic questionnaire were distributed electronically to pediatric hematology-oncology physicians nationally. Linear regression models for CF, BO, and CS as a function of potential predictors were constructed. Survey response rate was 28%. Female sex, BO score, distress about a "clinical situation," and "teaching" were associated with higher CF scores. "Administrative activities" were associated with lower CF scores. CF score, and distress about "administrative burden/academic stress" and "coworkers" were associated with higher BO scores. CS score and "socializing" were associated with lower BO scores. "Exercise," "socializing," and "talking with partner" were associated with higher CS scores. CF and BO scores, emotional depletion, and distress about the "work environment" and "administrative/academic burden" were associated with lower CS scores. Our data highlights the importance of strong social connections at work and at home to decrease BO and enhance CS. Professional development in leadership, communication, and conflict resolution, as well as "team building" events may perpetuate coworker relationships. Education about the importance of connectedness and self-care should begin early in medical education to cultivate robust coping mechanisms in trainees.

A Cross-sectional Analysis of Compassion Fatigue, Burnout, and Compassion Satisfaction in Pediatric Emergency Medicine Physicians in the United States.

OBJECTIVES: The objective was to determine the prevalence of compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) and identify potential personal and professional predictors of these phenomena in pediatric emergency medicine (PEM) physicians. METHODS: A modified Compassion Fatigue and Satisfaction Self-Test for Helpers and a questionnaire of personal and professional characteristics were distributed electronically to PEM physicians nationally. The prevalence of these phenomena was calculated. Hierarchical linear regression models for CF, BO, and CS as a function of potential risk factors were constructed. RESULTS: The final analyzable survey rate represented 22.7% of the physicians invited to participate. The prevalences of CF, BO, and CS were 16.4, 21.5, and 18.5%, respectively. BO score, distress about a "clinical situation," "physical work environment," and engaging in prayer/meditation were each significant determinants of higher CF scores, whereas "socializing with family/friends" was significantly associated with lower CF scores. CF score, emotional depletion, and distress due to "coworkers" were each significant determinants of higher BO scores, whereas CS score and "talking with a family member" as a means of self-care were significantly associated with lower BO scores. Socializing with family/friends and >20 years as PEM provider were each significant determinants of higher CS scores, whereas BO score, emotional depletion, distress about the physical work environment and "administrative issues," 10% to 24% of time spent caring for pediatric patients, and "talking with life partner" about work-related distress were each significant determinants of lower CS scores. We acknowledge that the generalizability of our findings is limited by the sample size and by the fact that participants were largely female, Caucasian, and junior faculty and worked in academic medical centers. CONCLUSIONS: PEM physicians are at risk for developing CF, BO, and low CS. Proactive awareness of these phenomena and their predictors may allow providers to better manage the unique challenges and emotional stressors of the pediatric ED to enhance personal well-being and professional performance.

A cross-sectional pilot study of compassion fatigue, burnout, and compassion satisfaction in pediatric palliative care providers in the United States.

OBJECTIVE: Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career dissatisfaction. Compassion satisfaction (CS) is emotional fulfillment derived from caring for others. The literature on BO in healthcare providers is extensive, whereas CF and CS have not been comprehensively studied. Because of ongoing exposure to patient and family distress, pediatric palliative care (PPC) providers may be at particular risk for CF. We conducted a cross-sectional pilot study of CF, BO, and CS among PPC providers across the United States. METHOD: The Compassion Fatigue and Satisfaction Self-Test for Helpers and a questionnaire of professional and personal characteristics were distributed electronically and anonymously to PPC physicians and nurses. Logistic and linear regression models for CF, BO, and CS as a function of potential risk factors were constructed. RESULTS: The survey response rate was 39%, primarily consisting of female, Caucasian providers. The prevalence of CF, BO, and CS was 18%, 12%, and 25%, respectively. Distress about a "clinical situation," physical exhaustion, and personal loss were identified as significant determinants of CF. Distress about "coworkers," emotional depletion, social isolation, and "recent involvement in a clinical situation in which life-prolonging activities were not introduced" were significant determinants of BO. Physical exhaustion, personal history of trauma, "recent involvement in a clinical situation in which life-prolonging activities were not introduced," and not discussing distressing issues were significant predictors of lower CS scores.Significance of resultsCF and BO directly influence the well-being and professional performance of PPC providers. To provide effective compassionate care to patients, PPC providers must be attentive to predictors of these phenomena. Further work is needed to explore additional causes of CF, BO, and CS in PPC providers as well as potential interventions.

A Cross-Sectional Analysis of Compassion Fatigue, Burnout, and Compassion Satisfaction in Pediatric Critical Care Physicians in the United States.

OBJECTIVES: To determine the prevalence of compassion fatigue, burnout, and compassion satisfaction and identify potential personal and professional predictors of these phenomena in pediatric critical care providers. DESIGN: Cross-sectional, online survey. SETTING: Pediatric critical care practices in the United States. SUBJECTS: Pediatric critical care fellows and attending physicians. INTERVENTIONS: None. MEASUREMENT AND MAIN RESULTS: A modified Compassion Fatigue and Satisfaction Self-Test for Helpers and a questionnaire of personal and professional characteristics were distributed electronically to pediatric critical care physicians nationally. Prevalence of these phenomena was calculated. Hierarchical linear regression models for compassion fatigue, burnout, and compassion satisfaction as a function of potential risk factors were constructed. The survey response rate was 35.7%. The prevalence of compassion fatigue, burnout, and compassion satisfaction was 25.7%, 23.2%, 16.8%, respectively. Burnout score, emotional depletion, and distress about a patient and/or the physical work environment were each significant determinants of higher Compassion Fatigue scores. Preparing for didactics, Compassion Fatigue score, distress about administrative issues and/or coworkers, and "self-care is not a priority" were each significant determinants of higher burnout scores, whereas female sex, Compassion Satisfaction score, and distress about the physical work environment were each significant determinants of lower burnout scores. Prayer/meditation, talking with colleagues, senior faculty level, and student and/or chaplain involvement when delivering bad news were each significant predictors of higher Compassion Satisfaction scores, whereas female sex, burnout score, emotional depletion, and distress about coworkers were each significant predictors of lower Compassion Satisfaction scores. CONCLUSIONS: In our population, chronic exposure to distress in patients and families puts pediatric critical care physicians at risk for compassion fatigue and low compassion satisfaction. Awareness of compassion fatigue, burnout, and compassion satisfaction and their predictors may benefit providers both personally and professionally by allowing them to proactively manage their distress.

"I'm Not a Spiritual Person." How Hope Might Facilitate Conversations About Spirituality Among Teens and Young Adults With Cancer.

CONTEXT: Supporting patients' spiritual needs is central to palliative care. Adolescents and young adults (AYAs) may be developing their spiritual identities; it is unclear how to navigate conversations concerning their spiritual needs. OBJECTIVES: To 1) describe spiritual narratives among AYAs based on their self-identification as religious, spiritual, both, or neither and 2) identify language to support AYAs' spiritual needs in keeping with their self-identities. METHODS: In this mixed-methods, prospective, longitudinal cohort study, AYAs (14-25 years old) with newly diagnosed cancer self-reported their "religiousness" and "spirituality." One-on-one, semistructured interviews were conducted at three time points (within 60 days of diagnosis, six to 12 months, and 12-18 months later) and included queries about spirituality, God/prayer, meaning from illness, and evolving self-identity. Post hoc directed content analysis informed a framework for approaching religious/spiritual discussions. RESULTS: Seventeen AYAs (mean age 17.1 years, SD = 2.7, 47% male) participated in 44 interviews. Of n = 16 with concurrent survey responses, five (31%) self-identified as both "religious and spiritual," five (31%) as "spiritual, not religious," one (6%) as "religious, not spiritual," and five (31%) as neither. Those who endorsed religiousness tended to cite faith as a source of strength, whereas many who declined this self-identity explicitly questioned their preexisting beliefs. Regardless of self-identified "religiousness" or "spirituality," most participants endorsed quests for meaning, purpose, and/or legacy, and all included constructs of hope in their narratives. CONCLUSION: AYA self-identities evolve during the illness experience. When words such as "religion" and "spirituality" do not fit, explicitly exploring hopes, worries, meaning, and changing life perspectives may be a promising alternative.