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Current accreditation and professional standards in health care reflect the importance of chaplaincy services to patients, families, the health care team, and the organization. However, inadequate spiritual assessment, the organizational structure and climate, and lack of understanding of the chaplain's role can prevent these services from being optimally utilized. Chaplains are trained extensively to provide spiritual care to patients, families, and staff as they assist in meeting the organization's mission to provide patient-centered care. Spiritual assessment is a tool for nurses to recognize patient's needs for spiritual intervention and chaplain referral. By collaborating with chaplains, nurses can help develop an organizational infrastructure capable of timely responsiveness to patients' spiritual needs. [ABSTRACT FROM AUTHOR]

OBJECTIVE: The literature suggests that a majority of pediatricians believe that spirituality and religion are relevant in clinical practice, but only a minority gives them attention. This project explored this disparity by relating personal/professional characteristics of pediatricians to the frequency with which they give attention to spirituality and religion. METHODS: Pediatricians (N = 737) associated with 3 academic Midwestern pediatric hospitals responded to a survey that requested information concerning the frequency with which they (1) talked with patients/families about their spiritual and religious concerns and (2) participated with them in spiritual or religious practices (eg, prayer). The associations between these data and 10 personal and professional characteristics were examined. RESULTS: The results demonstrated the disparity, and the analysis identified 9 pediatrician characteristics that were significantly associated with more frequently talking with patients/families about their spiritual and religious concerns. The characteristics included increased age; a Christian religious heritage; self-description as religious; self-description as spiritual; the importance of one's own spirituality and religion in clinical practice; the belief that the spirituality and religion of patients/families are relevant in clinical practice; formal instruction concerning the role of spirituality and religion in health care; relative comfort asking about beliefs; and relative comfort asking about practices. All of these characteristics except pediatrician age were also significantly associated with the increased frequency of participation in spiritual and religious practices with patients/families. CONCLUSIONS: Attention to spiritual and religious concerns and practices are associated with a web of personal and professional pediatrician characteristics. Some characteristics pertain to the physician's personal investment in spirituality and religion in their own lives, and others include being uncomfortable with spiritual and religious concerns and practices. These associations shed light on the disparity between acknowledged spirituality and religion relevancy and inattention to it in clinical practice. [ABSTRACT FROM AUTHOR]

Context: Many general pediatrics residents lack sufficient opportunities to conduct difficult conversations with families, particularly about end-of-life care. Simulation learning is an effective means of practicing professional skills. A pediatric palliative care (PPC) physician is uniquely suited to mentor residents and fellows learning to lead difficult conversations through simulation. Co-facilitation of the simulated difficult conversation by a bereaved parent or family member enhances the learning experience., Objectives: To report 11-years' experience simulating difficult conversations with bereaved parent-actors., Methods: PPC physicians developed two simulations to teach difficult conversations to clinical learners at a midwestern quaternary pediatric medical center. Bereaved parents and hospital chaplains co-facilitated the simulation. The first portrayed the death of an infant following emergency resuscitation, and the second, a goals-of-care conversation with the parent of a child with a degenerative condition. A de-novo evaluation rubric was prepared using the six Accreditation Council for Graduate Medical Education (ACGME) Core Competencies to evaluate the participant's performance in the simulation., Results: For the first simulated scenario (N=194 residents; N=16 fellows), residents improved significantly on 16/21 ACGME-based criteria between encounters; for the second (N=118 residents; N=14 fellows), residents improved significantly on 10/21 criteria. Fellows' performance did not improve significantly in either scenario, but they presented with high baseline scores., Conclusions: Simulations with bereaved parent actors improved general pediatrics residents' performance and comfort during difficult conversations and are transportable to diverse settings., Competing Interests: Declartion of competing interest Nothing to disclose., (Copyright © 2024. Published by Elsevier Inc.)

Objective: To identify factors associated with the receipt, completion, and goals of palliative care birth plans during the prenatal period., Design: Retrospective observational study of medical record data., Setting: Midwestern U.S. quaternary pediatric hospital., Participants: Maternal-fetal dyads who received maternal-fetal medicine and palliative care from July 2016 through June 2021 (N = 128)., Methods: Using demographic and clinical predictors, we performed descriptive statistics, group comparisons (chi-square or Fisher exact test and Wilcoxon rank sum test or Student t test), and logistic regression for three outcomes: birth plan offered, birth plan completed, and goals of care (comfort-focused vs. other)., Results: Of 128 dyads, 60% (n = 77) received birth plans, 30% (n = 23) completed them, and 31% (n = 40) expressed comfort-focused goals. Participants with comfort-focused goals compared to other goals were more likely to receive birth plans, odds ratio (OR) = 7.20, 95% confidence interval (CI) [1.73, 29.9], p = .01. Participants of non-Black minority races had lower odds of being offered birth plans when compared to White participants, OR = 0.11, 95% CI [0.02, 0.68], p = .02. Odds of being offered (OR = 11.54, 95% CI [2.12, 62.81], p = .005) and completing (OR = 4.37, 95% CI [1.71, 11.17], p < .001) the birth plan increased with each prenatal palliative care visit. Compared to those without, those with neurological (OR = 9.32, 95% CI [2.60, 33.38], p < .001) and genetic (OR = 4.21, 95% CI [1.04, 17.06], p = .04) diagnoses had increased odds of comfort-focused goals., Conclusion: Quality improvement efforts should address variation in the frequency at which birth plans are offered. Increasing palliative care follow-up may improve completion of the birth plan., Competing Interests: Conflict of Interest The authors report no conflicts of interest or relevant financial relationships., (Copyright © 2024 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses. Published by Elsevier Inc. All rights reserved.)

Caregivers of children with medical complexity face daily tasks comparable to pediatric critical care nursing with multiple stressors. This may result in emotional and spiritual distress. Caregivers may also rely on their religion and spirituality to cope. Chaplains have the potential to support caregivers in this setting, beginning with spiritual assessment. This study's purpose was to verify the feasibility and acceptability of the Spiritual Care Assessment and Intervention framework adapted for home-based chaplaincy with caregivers of children receiving home mechanical ventilation (SCAI-Peds). A quasi-experimental, proof-of-concept trial with N = 6 caregivers and two board certified chaplains was carried out. SCAI-Peds was acceptable and feasible to caregivers, delivered with high fidelity, and was also acceptable to the chaplains. Home-based intervention delivery may provide more room for reflection and reframing than acute care settings. The results warrant advancing SCAI-Peds beyond the pilot stage.

Pediatric home-based hospice and palliative care is a growing and important sub-field within the larger pediatric palliative care landscape. Despite research demonstrating the clinical and systemic efficacy of pediatric home-based hospice and palliative care, there remain barriers to its optimal development, implementation, and dissemination as well as best clinical practice knowledge gaps. This case series presents specific examples of ubiquitous challenges in pediatric home-based hospice and palliative care in hopes of guiding future research, education, advocacy, and program development efforts., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

The off-label use of an intravenous dexmedetomidine infusion is an option for refractory symptoms in pediatric palliative care with a few published cases of in-home use, most limited to end-of-life care. After an intrathecal baclofen pump malfunction with meningitis and medication withdrawal, a 17-year-old adolescent with quadriparetic cerebral palsy and paroxysmal autonomic instability experienced relief of refractory pain and dystonia with an in-home intravenous dexmedetomidine infusion. His interdisciplinary care team collaborated to establish safety measures and adjust his home medication regimen to further improve quality of life well before his end of life., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2024 International Anesthesia Research Society.)

Objective: This hypothesis-generating study sought to assess the impact of home-based hospice and palliative care (HBHPC) provider home visits (HV) on healthcare use., Study Design: Retrospective review of individuals ages 1 month to 21 years receiving an in-person HBHPC provider (MD/DO or APN) HV through 2 HBHPC programs in the Midwest from January 1, 2013, through December 31, 2018. Descriptive statistics were calculated for healthcare use variables. Paired t test or Wilcoxon signed-rank test compared the changes in healthcare use the year before and year after initial provider HVs., Results: The cohort included 195 individuals (49% female), with diagnoses composed of 49% neurologic, 30% congenital chromosomal, 11% oncologic, 7% cardiac, and 3% other. After implementation of HBHPC services, these patients showed decreases in the median (IQR) number of intensive care unit days (before HV, 12 [IQR, 4-37]; after HV, 0 [IQR, 0-8]; P < .001); inpatient admissions (before HV, 1 [IQR, 1-3]; after HV, 1 [IQR, 0-2]; P = .005); and number of inpatient days (before HV, 5 [IQR, 1-19]; after HV, 2 [IQR, 0-8]; P = .009). There was an increase in clinically relevant phone calls to the HBHPC team (before HV, 1 [IQR, 0-4] vs after HV, 4 [IQR, 1-7]; P < .001) and calls to the HBHPC team before emergency department visits (before HV, 0 [IQR, 0-0] vs after HV, 1 [IQR, 1-2]; P < .001)., Conclusion: HBHPC provider HVs were associated with fewer inpatient admissions, hospital days, and intensive care unit days, and increased clinically relevant phone calls and phone calls before emergency department visit. These findings indicate that HBHPC HV may contribute to decreased inpatient use and increased use of the HBHPC team., Competing Interests: Declaration of Competing Interest The authors declare no conflicts of interest. This study was supported by internal division funds., (Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.)

Objectives: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly involved with life-limiting conditions understand dying and death., Methods: This qualitative study obtained interview data from N  = 44 5-18-year-old children in the USA, Haiti, and Uganda who were pediatric palliative care patients or siblings of patients. Of these, 32 were children with a serious condition and 12 were siblings of a child with a serious condition. Interviews were recorded, transcribed, verified, and analyzed using grounded theory methodology., Results: Loss of normalcy and of relationships emerged as central themes described by both ill children and siblings. Resilience, altruism, and spirituality had a bidirectional relationship with loss, being strategies to manage both losses and anticipated death, but also being affected by losses. Resiliency and spirituality, but not altruism, had a bidirectional relationship with anticipating death. Themes were consistent across the 3 samples, although the beliefs and behaviors expressing them varied by country., Significance of Results: This study partially fills an identified gap in research knowledge about ways in which children in 3 nations understand dying and death. While children often lack an adult vocabulary to express thoughts about dying and death, results show that they are thinking about these topics. A proactive approach to address issues is warranted, and the data identify themes of concern to children.

A paucity of evidence is available to guide integration of specialist palliative care into burn care. This study's purpose was to develop consensus on referral criteria using a modified Delphi process. Content experts were defined as burn or palliative care providers in locations where the teams have collaborative history; published at least one manuscript or presented nationally on burn and palliative care collaboration; or nomination as having equivalent expertise. N = 202 eligible persons were identified; n = 43 participated in Iteration 1 and Iteration 3 retained 79%. Iteration 1 invited participants to rank published referral criteria on a 9-point Likert-style scale. Consensus was defined as an interquartile range ≤ 2. Consensus items with median scores ≤ 3 were dropped from further consideration. Consensus items with median scores ≥ 7 were considered to be important and excluded in Iteration 2. Iteration 2 which presented non-consensus items with their associated median (interquartile range) and the participant's own ranking from Iteration 1. Iteration 3 presented three models; participants ranked in order of preference and suggested revisions. Consensus was achieved on a final set of criteria for specialist palliative care for persons who sustain burn injuries. Future research should prospectively evaluate the criteria against meaningful outcomes., Competing Interests: Declaration of Competing Interest Anjay Khandelwal is a consultant for Avita Medical and for Exsurco Medical. The other authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023 Elsevier Ltd and International Society of Burns Injuries. All rights reserved.)

Background/objective: The use of patient-reported outcomes (PRO) is increasing in pediatric clinical practice and research, including in clinical trials. Treatment teams are now able to discern differences in symptom and function reports between children with cancer and their family caregivers. Few studies, however, have quantified such differences., Design/methods: Children and caregivers were matched to create a dyad sample, and child/caregiver agreement of responses to the Patient-Reported Outcome Measurement Information System (PROMIS) Pediatric symptom and function measures were examined using the established minimally important difference (MID) value (three points) derived from these measures. Latent class analysis (LCA) was then used to analyze the status/patterns of response agreement., Results: A total of 430 dyadic cases (dyads) were used for LCA modeling. Three classes of child-caregiver concordance resulted: (a) Agreement-caregiver and child within one MID (200 dyads); (b) Disagreement-caregiver underestimating symptoms (47 dyads with caregiver scores more than 1 MID lower than the child scores); and (c) Disagreement-caregiver overestimating symptoms (183 dyads with caregiver scores more than 1 MID higher than child scores)., Conclusion: As PRO use increases in pediatric oncology, clinician identification of child/caregiver differences on symptom and function reports will help to distinguish family perceptions of cancer treatment impact. The treatment goal, in addition to mitigating symptom and function treatment-related burdens for the child and caregiver, may now also be to discern the direction and clinical meaning of the difference within the child-parent dyad., (© 2023 Wiley Periodicals LLC. This article has been contributed to by U.S. Government employees and their work is in the public domain in the USA.)

Current models of bereavement care do not address all of bereaved parents' unique needs. Diverse challenges limit parents' ability to access certain bereavement services. A web-based intervention prototype for bereaved parents was developed. Using convenience and snowball techniques, 14 participants (pediatric providers, software developers, and bereaved parents) were enrolled in a descriptive, cross-sectional feasibility and usability study. While the intervention was generally considered acceptable, three themes were identified to enhance its usability and acceptability: timing; delivery; and revisions. Further intervention development is needed to improve both short- and long-term physical and psychological outcomes for bereaved parents.

Purpose : This study aimed to determine the feasibility and acceptability of using videography to alleviate the stress of anticipatory mourning in pediatric palliative care patients. A secondary aim was to expand palliative/end of life care research by performing a more comprehensive examination of children's experiences with life-shortening illness. Methods : Eligible patients ages eight and older made a legacy video with the assistance of investigative staff and completed a questionnaire to evaluate their emotional states before and after making the video. Bereaved parents also received a questionnaire to assess the impact of the legacy. Results : Nine patients enrolled and eight completed the study through the therapeutic exit interview. Most reported decreased anxiety and a positive experience. Conclusion : Therapeutic videography is feasible and acceptable to accomplish and can improve the emotional state of participants. Conducting research requiring active participation of patients very near the end of life proved to be challenging., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Burn injuries often require complex interdisciplinary care. Despite potential benefits, consultation with specialist palliative care typically occurs in 2% of burn admissions, due largely to lack of availability and misconceptions concerning palliative care. Criteria to guide consultation with specialist palliative care have been developed at this institution. The purpose of this study was to quantify the sensitivity and specificity of these criteria, and then optimize them. Retrospective examination of 388 admissions over 15 months at this adult and pediatric Burn Center were conducted. Chi-square or Fisher's exact test for categorical variables and Wilcoxon Rank Sum test for continuous variables were used to test for between-group differences in demographic and clinical characteristics. Logistic regression model was built to determine modified Baux cut-off score using Youden index (J) value. Criteria were sensitive (0.96) and specific (0.90), though with a low positive predictive value (0.43). Persons with lengths of stay greater than one week, advanced directives, Allow Natural Death orders, and/or deterioration events were significantly more likely to have had palliative care consulted. There were significant between-group differences (with/without palliative care consultation) based on burn surface area, modified Baux score, and mortality risk. Potential criteria revisions are proposed. Prospective adherence to revised criteria could provide useful guidance to providers and benefit to patients and families., (© The Author(s) 2023. Published by Oxford University Press on behalf of the American Burn Association. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Introduction/Aims: Traumatic brain injuries (TBIs) are one of the leading causes of death and disability in children and adolescents. A significant number of those who survive suffer from the lasting cognitive, physical, or behavioral effects of TBI while the loss is devastating for families. The aim of the study is to characterize the pediatric population and formulate referral criteria for palliative care (PC) consults who would guide the most beneficial allocation of resources. Methods: This is an IRB-approved retrospective chart review study from January 1, 2017, to October 1, 2021, of persons presenting to the emergency department of a 467-bed quaternary pediatric hospital in the midwest with a moderate or severe TBI (ICD-10: S.06.2X and S.06.5X9A). Participants were excluded if they were admitted directly from an outside hospital or if the diagnosis code did not meet criteria. Results: N  = 33 patients presented with moderate or severe TBI, of which 17 had PC consult. There were no significant between-group demographic differences. Significant differences in clinical and outcome variables formed the basis of proposed referral criteria for specialist PC for children and adolescents sustaining a moderate-to-severe traumatic brain injury. Discussion: PC programs are a finite resource and should be available to and focused on those with greatest need. The proposed criteria provide empirically based guidance on when to consult, or consider consulting, specialist pediatric PC. Further testing of these criteria and their relationship with improved outcomes are desirable.

AbstractThere is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such technology that began in pediatric settings nearly 50 years ago. And while not void of medical and ethical examination, both the symbolic progression of medicine that ECMO embodies and its multidimensional challenges to patient care require more than an intellectual exercise. What we illustrate, then, is a person-centered framework that incorporates the philosophy and practice of palliative care and care-based ethical approaches. This person-centered framework is valuable for identifying and understanding challenges central to ECMO, guides collaborative decision-making, and recognizes the value of relationships within and between patients, families, healthcare teams, and others who impact and are impacted by ECMO. Specifically, this person-centered approach enables caregivers to provide compassionate and effective support in critical, and often urgent, situations where conflicts may emerge among healthcare team members, families, and other decision makers. By reflecting on three cases based on actual situations, we apply our person-centered framework and identify those aspects that were utilized in and informed this project. We aim to fill a current gap in the pediatric ECMO literature by presenting a person-centered framework that promotes caregiving relationships among hospitalized critically ill children, families, and the healthcare team and is supported through the philosophy and practice of palliative care and clinical ethics.

Home-based hospice and/or palliative care (HBHPC) is an important and increasingly utilized aspect of care for children with serious conditions-those with high mortality risk, which either impacts their quality of life or carries a significant caregiver burden. Provider home visits are a core feature; however, the travel time and human resource allocation are significant challenges. Balancing the appropriateness of this allocation requires further characterization of the value of home visits to families and identification of the value domains of HBHPC for caregivers. For study purposes, we defined a "home visit" as an in-person visit by a physician or advanced practice provider to a child's residence., Methods: The methods include a qualitative study using semistructured interviews and a grounded theory analytic framework enrolled caregivers of children aged 1 month to 26 years receiving HBHPC from either of 2 U.S. pediatric quaternary institutions between 2016 and 2021., Results: Twenty-two participants were interviewed; the mean (SD) interview duration was 52.9 (22.6) minutes. The final conceptual model has 6 major themes: communicating effectively, fostering emotional and physical safety, building and maintaining relationships, empowering the family, seeing the bigger picture, and sharing burdens., Conclusions: Caregiver-identified themes demonstrated improved communication, empowerment, and support from receiving HBHPC, which can facilitate enhanced family-centered, goal-concordant care., Competing Interests: The authors have no financial interest to declare in relation to the content of this article., (Copyright © 2023 the Author(s). Published by Wolters Kluwer Health, Inc.)

Background: Pediatric home-based palliative care and/or hospice provider (Physician, Advanced Practice Nurse, or Physician Assistant) home visits are an underexplored subject in the literature with little available descriptive data and limited evidence guiding how best to utilize them. Objectives: Describe the population receiving hospice and palliative medicine (HPM) provider home visits and characterize visit themes. Design: Retrospective chart review of electronic medical record (EMR) data Setting/Subjects: A total of 226 individuals 1 month to 21 years of age, who received an HPM provider home visit from January 1, 2013, to December 31, 2018; two large quaternary medical centers in the Midwest. Measurements: Demographic data, content, and details from home visit abstracted from the EMR. Results: The three most common diagnostic groups receiving HPM provider home visits were neurological (42%), congenital chromosomal (26%), and prematurity-related (14%) conditions. Goals of care (GOC) were discussed at 29% of visits; most commonly, goals related to code status (42%), technology dependence (20%), and nutrition/hydration (15%). A change in GOC occurred in 44% of visits. Forms of anticipatory guidance addressed were nutrition (68%), side effects of treatment (63%), pain assessment (59%), decline/death (32%), and allow natural death/do not resuscitate/advance directives (26%). Conclusion: HPM provider visits are diverse in content and changes in plan of care with potential for proactive identification of GOC and provision of important anticipatory guidance around patient decline and end of life. Further research is indicated to establish which populations benefit most and how to leverage this scarce resource strategically.

Purpose: As the demand for telemedicine services continues, greater knowledge about health care delivery preferences can inform high quality, efficient care. The present study sought to evaluate patient and family characteristics that may influence telemedicine utilization, particularly the choice between telephone and video telemedicine visits. Methods: This is a single-site cross-sectional, mixed methods study aimed at identifying factors associated with use of telephone and video telemedicine visits with pediatric patients and their families. Results: Seven hundred seventy-five ( n  = 775) caregivers completed a survey and 22 caregivers participated in follow-up focus groups and interviews. Findings indicate that female caregivers, those with higher education levels, and those with experience with technology were more likely to choose video telemedicine visits. Qualitative feedback provided several valuable recommendations based on patient/family experiences, which fell into four categories, including scheduling, accessibility, treatment resources, and care coordination. Conclusion: Findings demonstrate that previous experience, familiarity, and technology access may be important drivers in health care modality preference. Key elements that emerged relevant to user satisfaction and overall quality of the telemedicine experience: caregiver choice on visit type (telemedicine vs. in-person), child health care needs, and telemedicine education/training. As society moves toward pay-per-performance and value-based reimbursement, it is imperative that we focus on experience, health care needs, and training to improve patient experience and lower health care costs.

Background: Children and adolescents with serious conditions may benefit from simultaneous hospice and palliative care. Although the Affordable Care Act covers concurrent care, uptake has been limited. Limited descriptive data exist on receiving simultaneous community hospice and pediatric palliative care. Objective: Characterize a population of children and adolescents receiving simultaneous pediatric home-based hospice and palliative care (HBHPC). Design/Setting/Subjects: Post hoc analysis of retrospective study of N  = 31 patients enrolled in pediatric HBHPC, with comparison to larger two-site sample receiving either hospice or palliative care at home. Measurement: Demographic and clinical data extracted from the electronic medical record. Results: Data characterizing the population receiving simultaneous care are presented; compared with those receiving either hospice or palliative care at home, the only significant differences were a greater proportion of decedent children and greater billable hours. Conclusions: Findings support the lack of meaningful distinction between hospice and palliative care in pediatrics.

Burns frequently require complex interdisciplinary care. Specialist palliative care (PC) minimizes suffering, aids in decision making, and provides family support in addition to end-of-life care. Specialist PC is a limited resource, best conserved by identifying persons most likely to benefit from a PC referral. Little guidance is available for clinicians on whether and when to refer to PC. This study's purpose was to identify referral criteria using a mixed-methods approach. Data were examined for between-group differences using Fisher's exact, chi-square, or Wilcoxon Rank Sum tests. Qualitative thematic analysis was used to analyze PC provider notes to describe interventions provided. These data formed initial referral criteria, which were reviewed by an expert panel. Significant between-group differences included dying in the burn center; whether multiple patients were transported to the burn center from one event; and ventilator days. Four themes emerged from qualitative analysis. These included managing physical aspects of care; clarifying goals of care; managing end-of-life care; and managing patient/family psychosocial distress. Expert panel input clarified referral criteria language and supplemented the proposed criteria. We present empirically derived referral criteria to guide burn providers in referring persons for specialist PC. Subsequent testing is required to determine their efficacy in improving patient/family outcomes., (© The Author(s) 2022. Published by Oxford University Press on behalf of the American Burn Association. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Pediatric intensive care unit (PICU) admissions are caregiver stressors with potential long-term impact. Writing interventions have shown health benefits, although not yet with parents writing during their child's PICU admission. Objective: The study objective was to quantify intervention acceptability and feasibility and to qualitatively examine written texts. Design: This is a proof-of-concept three-arm randomized trial. Setting and Subjects: Subjects were legal caregivers ≥18 years, able to read and write English, and of children ≤18 years in a U.S. PICU for ≥1 day. Measurements: Treatment Acceptability Questionnaire, enrollment rates, completed encounters, and qualitative thematic analysis. Results: Acceptability was high (49% enrollment; mean [standard deviation] Treatment Acceptability Questionnaire scores: M  = 24.8 [2.4]). Feasibility was 100% scheduled-to-completed sessions. Thematic analysis revealed two themes (people and relationships); texts were more cognitive than emotional. Conclusions: Caregivers, provided resources and supported by a narrative medicine facilitator, are likely to engage in expressive writing. The intervention warrants subsequent development.

Telechaplaincy is the use of telecommunications and virtual technology to deliver religious/spiritual care. It has been used for decades, but chaplains' understanding of telehealth lags behind other disciplines. The purpose of this study was to describe the use of telechaplaincy in the United States and chaplains' perceptions of the practice. Researchers surveyed chaplains through chaplain-certifying-body email-listservs, then conducted in-depth interviews with 36 participants identified through maximum variation sampling. Quantitative analysis and qualitative, thematic analysis were conducted. Quantitative results show that in 2019, approximately half of surveyed chaplains performed telechaplaincy. Rural chaplains were more likely to have practiced. Chaplains who had not practiced were more willing to try if they believed it was effective at meeting religious/spiritual needs. Qualitative findings describe chaplains' perceptions of strengths, weaknesses, and best practices.

Competing Interests: The authors have no funding or conflicts of interest to disclose.

Importance: The effect of pediatric advance care planning (pACP) on the sustainability of end-of-life treatment preference congruence between adolescents with cancer and their families has not been examined., Objective: To evaluate the longitudinal efficacy of the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) intervention to sustain adolescent-family congruence about end-of-life treatment preferences., Design, Setting, and Participants: This multisite, assessor-blinded, randomized clinical trial enrolled adolescents with cancer (aged 14-21 years) and their family members from 4 pediatric hospitals between July 16, 2016, and April 30, 2019. Participants were randomized 2:1 to FACE-TC (intervention group) or treatment as usual (control group) and underwent 5 follow-up visits over an 18-month postintervention period. Intention-to-treat analyses were conducted from March 9, 2021, to April 14, 2022., Exposures: Adolescent-family dyads randomized to the FACE-TC group received 3 weekly 60-minute sessions consisting of the discussion and/or completion of the Lyon Family-Centered Advance Care Planning Survey (session 1), Respecting Choices Next Steps pACP conversation (session 2), and Five Wishes advance directive (session 3). Dyads in the control group received treatment as usual. Both groups received pACP information., Main Outcomes and Measures: Congruence was measured by completion of the Statement of Treatment Preferences (a document that discusses 4 hypothetical clinical situations and treatment choices for each scenario: continue all treatments, stop all efforts to keep me alive, or unsure) after session 2 (time 1) and at 3 months (time 2), 6 months (time 3), 12 months (time 4), and 18 months (time 5) after intervention. The influence of FACE-TC on the trajectory of congruence over time was measured by longitudinal latent class analysis., Results: A total of 252 participants (126 adolescent-family dyads) were randomized. Adolescents (mean [SD] age, 17 [1.9] years) and family members (mean [SD] age, 46 [8.3] years) were predominantly female (72 [57%] and 104 [83%]) and White individuals (100 [79%] and 103 [82%]). There was an 83% (104 of 126) retention at the 18-month assessment. Two latent classes of congruence over time were identified: high-congruence latent class (69 of 116 [60%]) and low-congruence latent class (47 of 116 [41%]). The dyads in the FACE-TC group had a 3-fold odds of being in the high-congruence latent class (odds ratio [OR], 3.22; 95% CI, 1.09-9.57) compared with the control group. Statistically significant differences existed at 12 months (β [SE] = 1.17 [0.55]; P = .03]) but not at 18 months (OR, 2.08; 95% CI, 0.92-4.69). In the high-congruence latent class, good agreement (agreement on 2 or 3 of 4 situations) increased over 12 months. White adolescents and families had significantly greater odds of congruence than a small population of American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, or multiracial adolescents and families (OR, 3.97; 95% CI, 1.07-14.69)., Conclusions and Relevance: Results of this trial showed that, for those who received the FACE-TC intervention, the families' knowledge of their adolescents' end-of-life treatment preferences was sustained for 1 year, suggesting yearly follow-up sessions. Race and ethnicity-based differences in the sustainability of this knowledge reflect a difference in the effect of the intervention and require further study., Trial Registration: ClinicalTrials.gov Identifier: NCT02693665.

Introduction/aims: Most patients with Duchenne muscular dystrophy (DMD) in the US are diagnosed at about age 5 years. Some adolescents and young adults (AYAs) with DMD are now living into their fourth decade, yet AYAs and caregivers are frequently unprepared to address changes in goals of care due to disease progression. The hypothesis-generating research question was how AYAs with DMD and their caregivers understand the relationship between physical changes and the need to change goals of care., Methods: Grounded theory design using data from N = 30 semi-structured interviews (n = 13 AYA; n = 17 caregivers) from two sites., Results: AYAs with DMD frequently defer considering and/or reconsidering goals of care based on (1) delays in diagnosis; (2) gradual, rather than episodic, disease progression; and (3) orientation to living in the present. Desire for autonomy motivates advance care planning and end-of-life treatment preferences for some., Discussion: Routine inquiry into AYA and caregiver goals for living may normalize goals of care conversations, maximizing patients' ability to process information, reflect on preferences, and articulate wishes. Discussing present-day goals and abilities may invite conversation about future preferences. Framing conversations in terms of AYA autonomy may increase motivation to engage in such discussions., (© 2022 Wiley Periodicals LLC.)

Introduction: Home Patient-Controlled Analgesia (PCA) is an effective and often preferred therapy for the treatment of chronic pain symptoms in the pediatric palliative care patient. There is little previous research of patient experience with Home PCA. The purpose of this study was to investigate use of home PCA devices in pediatric patients to inform palliative care providers considering an alternative management option for the treatment of end-of-life or chronic pain., Methods: A chart review was performed of patients prescribed home PCA. Surveys were sent to patients' guardians/caregivers. Questions referred to caregiver impression/satisfaction with information provided regarding use of the PCA machine, the medication used, the benefits and risks of PCA, monitoring of patient pain level and alertness, machine efficacy, and fears and concerns., Results: Thirty-four patients met inclusion criteria, and 18 patient families completed surveys. Demographic data showed that the majority were Caucasian and had a cancer diagnosis. Patient age and duration of home PCA use varied greatly. Overall, participants were satisfied with information received and felt positively about home PCA, albeit expressing concerns. The majority described the machine as easy to use and were satisfied with their child's pain management and level of alertness., Conclusion: Responses indicated that home PCA is a manageable and effective alternative to traditional analgesic medications for management of chronic pain in the pediatric patient.

The purpose of this mixed-methods retrospective study was to characterize the linguistic and narrative properties of texts generated by hospitalized pediatric patients who are experiencing significant illnesses. These young writers voluntarily participated in a narrative intervention through a program at a children's hospital that serves diverse urban and rural populations. The primary aim was to use interpretive theoretical analysis and linguistic analysis to test the following hypotheses: (1) hospital-generated texts have linguistic characteristics consistent with texts written to improve health outcomes; (2) stories told by pediatric patients through poetry and prose can be classified using Frank's illness narrative types, serving as a starting point to situate caregivers into the pediatric writer's world in a moment in time; (3) pediatric stories are authentic stories that yield important insights about patients and their relationships with others despite lacking formal narrative elements (e.g., plot) and form.

Since moral injury was introduced in the psychological literature little more than a decade ago, it has received substantial attention from mental health professionals as well as chaplains. This special issue features ways that chaplains are and can be engaged in addressing moral injury within health care contexts, especially the Department of Veterans Affairs. The efforts highlighted in this special issue provide building blocks for advancing moral injury care practices, research agendas, and interdisciplinary collaborations into the future.

Background: Approximately half of children receiving palliative care are under age five; however, there are a few studies exploring palliative care interventions for this population. The purpose of this study was to evaluate the effects of Reiki on pain, stress, heart, and respiratory rates, oxygenation, and quality of life (QoL) in hospitalized young children receiving palliative care services. Methods: In this single-group pilot study, hospitalized children receiving palliative care who were aged 1-5 years received two Reiki sessions per week for 3 weeks. Physiologic measures were assessed pre/post each session, and parent report measures of pain and QOL were collected at baseline, 3 weeks, and 6 weeks. The parent rating of Reiki's perceived efficacy and their own symptoms were also measured. Results: Sixteen families consented. Children had a mean age of 26 months and included nine boys and seven girls. Results were not significant but there were medium-to-large clinical effect sizes for children's QoL, stress, oxygenation, heart, and respiratory rates. Parents' physical and mental health scores decreased over time. Children exhibited signs of relaxation such as quiet sleep post-Reiki versus active awake pre-Reiki session. Conclusion: Reiki is a noninvasive relaxing therapy that is useful for hospitalized young children receiving palliative care. The children reacted positively in both action and outcome measures. Multisite studies with larger sample sizes are needed to be able to generate enough scientific evidence to fully recommend Reiki as an adjunct for pain management.

Background: Very little research has been reported examining nonpharmacological symptom management strategies for very young, hospitalized children receiving palliative care, and none has involved Reiki-a light touch therapy., Objectives: The aim of this study was to determine if completing a Reiki intervention with hospitalized 1- to 5-year-old children with chronic, life-limiting conditions receiving palliative care was feasible and acceptable., Methods: Children ages 1-5 years receiving palliative care who were expected to be hospitalized for at least 3 weeks were recruited for a single-arm, mixed-methods, quasi-experimental pre- and poststudy. Six protocolized Reiki sessions were conducted over 3 weeks. We calculated feasibility by the percentage of families enrolled in the study and acceptability by the percentage of families who completed all measures and five out of six Reiki sessions. Measures were collected at baseline, at the end of the intervention period, and 3 weeks later. At the final follow-up visit, parents were verbally asked questions relating to the acceptability of the intervention in a short structured interview., Results: We screened 90 families, approached 31 families, and recruited 16 families, whereas 15 families declined. Reasons for not participating included that the child had "a lot going on," would be discharged soon, and families were overwhelmed. Of those enrolled, most completed all measures at three time points and five out of six Reiki sessions. We completed nearly all scheduled Reiki sessions for families that finished the study. All parents reported that they would continue the Reiki if they could, and almost all said they would participate in the study again; only one parent was unsure., Discussion: Young children and their parents found Reiki acceptable; these results are comparable to an earlier study of children 7-16 years of age receiving palliative care at home and a study of massage for symptom management for hospitalized children with cancer. These findings add to the literature and support further investigation of Reiki's efficacy as a nonpharmacological symptom management intervention., Competing Interests: The authors have no conflict of interest to declare., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Introduction: Pediatric palliative care (PPC) benefits patients and families, while potentially creating emotional and resource-management burdens for providers. This study's purpose was to characterize the occurrence of deaths attended by PPC providers outside of "business hours." Methods: N  = 786 PPC patients at a single center died between 2008 and 2015. Descriptive statistics were prepared for all variables (Wilcoxon rank-sum test for continuous; chi-square or Fisher's exact test for categorical). Results: N  = 434 (55%) of deaths occurred outside of business hours; n  = 332 (70%) were attended by PPC. Time spent attending a death was not significantly longer when other PPC providers were present but was when certain tasks were performed (coordination with medical examiner and memory making). Conclusion: The occurrence of the majority of deaths outside of business hours has significant implications for service delivery models, provider emotional health, and health care value.

New medical technology has extended children's lives, creating challenges for parental decision-making. Many parents utilize religion or spirituality (R/S). This study examined the semi-structured interviews of 24 parents who made significant medical decisions. Major domains included drawing on guidance from an internal or personal R/S source; some described making decisions by surrendering decision-making agency to the Divine; being guided by beliefs in the afterlife, including that their child's suffering would be alleviated in death, and/or making their decision in a partnership with the Divine. Participants also describe being guided by external R/S sources. Participants spoke about receiving counsel from spiritual communities, that God worked through the medical team, and/or seeking guidance through prayer or spiritual writings. Parents use R/S to make medical decisions for their children, and many consider the chaplain to be part of the medical team. Chaplains have a role to play in helping to facilitate the use of religion/spirituality in medical decision-making for those parents who identify as religious/spiritual as well as those who are not currently utilizing their beliefs.

Background: Despite steady gains in life expectancy, individuals with cystic fibrosis (CF) lung disease still experience rapid pulmonary decline throughout their clinical course, which can ultimately end in respiratory failure. Point-of-care tools for accurate and timely information regarding the risk of rapid decline is essential for clinical decision support., Objective: This study aims to translate a novel algorithm for earlier, more accurate prediction of rapid lung function decline in patients with CF into an interactive web-based application that can be integrated within electronic health record systems, via collaborative development with clinicians., Methods: Longitudinal clinical history, lung function measurements, and time-invariant characteristics were obtained for 30,879 patients with CF who were followed in the US Cystic Fibrosis Foundation Patient Registry (2003-2015). We iteratively developed the application using the R Shiny framework and by conducting a qualitative study with care provider focus groups (N=17)., Results: A clinical conceptual model and 4 themes were identified through coded feedback from application users: (1) ambiguity in rapid decline, (2) clinical utility, (3) clinical significance, and (4) specific suggested revisions. These themes were used to revise our application to the currently released version, available online for exploration. This study has advanced the application's potential prognostic utility for monitoring individuals with CF lung disease. Further application development will incorporate additional clinical characteristics requested by the users and also a more modular layout that can be useful for care provider and family interactions., Conclusions: Our framework for creating an interactive and visual analytics platform enables generalized development of applications to synthesize, model, and translate electronic health data, thereby enhancing clinical decision support and improving care and health outcomes for chronic diseases and disorders. A prospective implementation study is necessary to evaluate this tool's effectiveness regarding increased communication, enhanced shared decision-making, and improved clinical outcomes for patients with CF., (©Christopher Wolfe, Teresa Pestian, Emrah Gecili, Weiji Su, Ruth H Keogh, John P Pestian, Michael Seid, Peter J Diggle, Assem Ziady, John Paul Clancy, Daniel H Grossoehme, Rhonda D Szczesniak, Cole Brokamp. Originally published in JMIR Medical Informatics (http://medinform.jmir.org), 16.12.2020.)

Objective: To describe the demographic and clinical characteristics of a cohort of patients referred to pediatric hospice and home-based palliative care (HBPC) programs across Ohio in 2016., Study Design: Retrospective cohort study of patients referred to hospice/HBPC from 3 pediatric palliative care programs in Ohio in 2016. Demographic and clinical data were extracted from the medical record and analyzed with descriptive statistics., Results: There were 209 patients referred: 49 (24%) to hospice and 160 (77%) to HBPC. The most common diagnoses were genetic/chromosomal syndromes (23%), neurologic or neurodegenerative conditions (23%), and cancer (21%). Durable medical equipment use was frequent (85%), with gastrostomy or jejunostomy tubes (22%) the most common. Most patients (64%) retained full-code resuscitation status. Fifty-seven patients (27%) died before July 1, 2018: 37 in hospice (18% of the overall cohort, 65% of decedents) and 20 in HBPC (10% of the overall cohort, 35% of decedents). Sixty-seven percent of hospice and 40% of HBPC patients died at home., Conclusions: Pediatric hospice and HBPC programs serve a diverse cohort of patients. Patients referred to pediatric HBPC programs commonly die and are likely to die at home despite not being enrolled in hospice care. The high proportion of decedent HBPC patients indicates that the notion of hospice vs palliative care may present a false dichotomy in many children with life-limiting conditions. Reimbursement models for HBPC should reflect the clinical similarity to hospice in the care of children with life-limiting illnesses., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Background: Cancer diagnoses pose challenges to adolescents' and young adults' (AYA) physical, mental, and emotional health, and developmental tasks. In order for AYAs, caregivers, clinicians, and other collaborators to optimize health outcomes (coproduction of health), understanding what living well means for AYAs who have experienced cancer is necessary. The objective was to develop an empirical definition of "living well" for AYAs who have experienced cancer to broadly understand AYA values and priorities. This definition may ultimately guide future conversations between caregivers and AYAs, eliciting thorough, personal definitions of living well from individual AYAs. Such conversations may enhance AYA participation in coproducing their health., Procedure: Qualitative analysis using a phenomenological approach of N = 30 structured Respecting Choices interviews conducted with AYAs (14-21 years; mean 84.2 [SD 69] months postcancer diagnosis with 21% on active treatment) from four tertiary pediatric hospitals in the context of a primary study of a pediatric advance care planning intervention trial., Results: AYAs who have experienced cancer conceptualized "living well" as maintaining physical, mental, and emotional health, as well as engaging in purposeful, age-appropriate activities with people important to them. Living well had three components: living mindfully, living an identity as a healthy AYA, and spending time with friends and family., Conclusions: Conversations with AYAs who have experienced cancer elicited rich, complex concepts of "living well." Provider initiation of discussions about living well may facilitate personalized goals of care conversations. This study may serve as the basis to design and prototype future clinical interventions to enhance AYA engagement., (© 2020 Wiley Periodicals LLC.)

Introduction: Greater than 70% of children who die in our institution annually die in an intensive care unit (ICU) setting. Family privacy, visitation policies, and an inability to perform religious rituals in the ICU are barriers to provide children with culturally competent, family-centered care when a child dies. The goal of this project was to profoundly understand family and staff experiences surrounding pediatric death in our institution to identify unique opportunities to design improved, novel delivery models of pediatric end of life (EOL) care., Methods: This project utilized a structured process model based on the Vogel and Cagan's 4-phase integrated new product development process model. The 4 phases are identifying, understanding, conceptualizing, and realizing. We utilized an adaptation of this process model that relies on human-centered and design thinking methodologies in 3 phases: research, ideation, and refinement of a process or product opportunity., Results: There were 2 primary results of this project: 5 process and opportunity areas to improve the EOL experience across the hospital, and a set of criteria and considerations for a dedicated EOL space., Discussion: Sometimes, the best outcome we can provide for a child and their family is a peaceful, dignified death. This project utilized human-centered design to create improved process outcomes and to design a dedicated EOL space for children who die in the hospital. Offering grieving families quiet, private time with their child in a beautiful, dignified, peaceful location enables the beginning of improved bereavement outcomes for the family and staff., (Copyright © 2020 the Author(s). Published by Wolters Kluwer Health, Inc.)

Background: Improving surgeons' technical performance may reduce their frequency of postoperative complications. The authors conducted a pilot trial to evaluate the feasibility of a surgeon-delivered audit and feedback intervention incorporating peer surgical coaching on technical performance among surgeons performing cleft palate repair, in advance of a future effectiveness trial., Methods: A nonrandomized, two-arm, unblinded pilot trial enrolled surgeons performing cleft palate repair. Participants completed a baseline audit of fistula incidence. Participants with a fistula incidence above the median were allocated to an intensive feedback intervention that included selecting a peer surgical coach, observing the coach perform palate repair, reviewing operative video of their own surgical technique with the coach, and proposing and implementing changes in their technique. All others were allocated to simple feedback (receiving audit results). Outcomes assessed were proportion of surgeons completing the baseline audit, disclosing their fistula incidence to peers, and completing the feedback intervention., Results: Seven surgeons enrolled in the trial. All seven completed the baseline audit and disclosed their fistula incidence to other participants. The median baseline fistula incidence was 0.4 percent (range, 0 to 10.5 percent). Two surgeons were unable to receive the feedback intervention. Of the five remaining surgeons, two were allocated to intensive feedback and three to simple feedback. All surgeons completed their assigned feedback intervention. Among surgeons receiving intensive feedback, fistula incidence was 5.9 percent at baseline and 0.0 percent following feedback (adjusted OR, 0.98; 95 percent CI, 0.44 to 2.17)., Conclusion: Surgeon-delivered audit and feedback incorporating peer coaching on technical performance was feasible for surgeons.

Aims: Using an 18-month, multisite randomized control trial as an exemplar, the aim of this study was to identify themes related to adolescent and parental feasibility and acceptability for participation in large behavioural trials designed to improve adolescents' Type 1 diabetes self-management., Methods: Thematic analysis methodology was used to develop themes describing factors related to acceptability and feasibility., Results: Based on a sample of interviews (N = 72), factors contributing to intervention acceptability and feasibility were identified. Aspects of acceptability included: a framework for goal-setting, the coach as a non-judgemental listener, perception of an ongoing benefit to participation and the delivery mode. Aspects of feasibility included: participants' altruism to help adolescents with Type 1 diabetes; pre-enrolment preparation for intervention content and duration; and the option of remote intervention delivery via telephone or video, which minimized travel time and costs. In addition, participants described positive outcomes including improvements in behaviour, Type 1 diabetes self-management behaviours and parent-adolescent communication, and emotion-attitude changes. Participants also described potential revisions that may inform future trials., Conclusions: Acceptability and feasibility of behavioural interventions with adolescents with chronic illness have multifactorial dimensions. While empowering adolescent self-management, parental support is also an under-appreciated aspect to consider. Potential revisions were identified for subsequent behavioural trials., (© 2019 Diabetes UK.)

Importance: The associations of spiritual and religious factors with patient-reported outcomes among adolescents with cancer are unknown., Objective: To model the association of spiritual and religious constructs with patient-reported outcomes of anxiety, depressive symptoms, fatigue, and pain interference., Design, Setting, and Participants: This cross-sectional study used baseline data, collected from 2016 to 2019, from an ongoing 5-year randomized clinical trial being conducted at 4 tertiary-referral pediatric medical centers in the US. A total of 366 adolescents were eligible for the clinical trial, and 126 were randomized; participants had to be aged 14 to 21 years at enrollment and be diagnosed with any form of cancer. Exclusion criteria included developmental delay, scoring greater than 26 on the Beck Depression Inventory II, non-English speaking, or unaware of cancer diagnosis., Exposures: Spiritual experiences, values, and beliefs; religious practices; and overall self-ranking of spirituality's importance., Main Outcomes and Measures: Variables were taken from the Brief Multidimensional Measurement of Religiousness/Spirituality (ie, feeling God's presence, daily prayer, religious service attendance, being very religious, and being very spiritual) and the spiritual well-being subscales of the Functional Assessment of Chronic Illness Therapy (meaning/peace and faith). Predefined outcome variables were anxiety, depressive symptoms, fatigue, and pain interference from Patient-Reported Outcomes Measurement Information System pediatric measures., Results: A total of 126 individuals participated (72 [57.1%] female participants; 100 [79.4%] white participants; mean [SD] age, 16.9 [1.9] years). Structural equation modeling showed that meaning and peace were inversely associated with anxiety (β = -7.94; 95% CI, -12.88 to -4.12), depressive symptoms (β = -10.49; 95% CI, -15.92 to -6.50), and fatigue (β = -8.90; 95% CI, -15.34 to -3.61). Feeling God's presence daily was indirectly associated with anxiety (β = -3.37; 95% CI, -6.82 to -0.95), depressive symptoms (β = -4.50; 95% CI, -8.51 to -1.40), and fatigue (β = -3.73; 95% CI, -8.03 to -0.90) through meaning and peace. Considering oneself very religious was indirectly associated with anxiety (β = -2.81; 95% CI, -6.06 to -0.45), depressive symptoms (β = -3.787; 95% CI, -7.68 to -0.61), and fatigue (β = -3.11, 95% CI, -7.31 to -0.40) through meaning and peace. Considering oneself very spiritual was indirectly associated with anxiety (β = 2.11; 95% CI, 0.05 to 4.95) and depression (β = 2.8, 95% CI, 0.07 to 6.29) through meaning and peace. No associations were found between spiritual scales and pain interference., Conclusions and Relevance: In this study, multiple facets of spirituality and religiousness were associated with anxiety, depression, and fatigue, all of which were indirectly associated with the participant's sense of meaning and peace, which is a modifiable process. Although these results do not establish a causal direction, they do suggest palliative interventions addressing meaning-making, possibly including a spiritual or religious dimension, as a novel focus for intervention development.

Importance: Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for end-of-life care., Objective: To examine patient-reported end-of-life values and needs of adolescents with cancer and congruence with their families' understanding of these needs., Design, Setting, and Participants: This cross-sectional survey was conducted among adolescent-family dyads from July 16, 2016, to April 30, 2019, at 4 tertiary care pediatric US hospitals. Participants included 80 adolescent-family dyads (160 participants) within a larger study facilitating pediatric advance care planning. Adolescent eligibility criteria included being aged 14 to 21 years, English speaking, being diagnosed with cancer at any stage, and knowing their diagnosis. Family included legal guardians for minors or chosen surrogate decision-makers for those aged 18 years or older. Data analysis was performed from April 2019 to November 2019., Exposure: Session 1 of the 3-session Family Centered Pediatric Advance Care Planning for Teens With Cancer intervention., Main Outcomes and Measures: The main outcome was congruence between adolescents with cancer and their families regarding adolescents' values, goals, and beliefs about end-of-life care. Prevalence-adjusted and bias-adjusted κ (PABAK) values were used to measure congruence on the Lyon Advance Care Planning Survey-Revised (Patient and Surrogate versions)., Results: A total of 80 adolescent-family dyads (160 participants) were randomized to the intervention group in the original trial. Among the adolescents, 44 (55.0%) were female and 60 (75.0%) were white, with a mean (SD) age of 16.9 (1.8) years. Among family members, 66 (82.5%) were female and 65 (81.3%) were white, with a mean (SD) age of 45.3 (8.3) years. Family members' understanding of their adolescent's beliefs about the best time bring up end-of-life decisions was poor: 86% of adolescents wanted early timing (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but only 39% of families knew this (PABAK, 0.18). Families' understanding of what was important to their adolescents when dealing with their own dying was excellent for wanting honest answers from their physician (PABAK, 0.95) and understanding treatment choices (PABAK, 0.95) but poor for dying a natural death (PABAK, 0.18) and being off machines that extend life, if dying (PABAK, 0)., Conclusions and Relevance: Many families had a poor understanding of their adolescent's values regarding their own end-of-life care, such as when to initiate end-of-life conversations and preference for being off machines that extend life. Pediatric advance care planning could minimize these misunderstandings with the potential for a substantial impact on quality of care.

Recent evidence suggests that, when compared to their cisgender counterparts, transgender youth exhibit more unsafe sexual behavior that may elevate their risk for sexually transmitted infections. The aim of this study was to better understand what transgender youth know about oral sex, related consequences, and mechanisms of protection and where they obtained this information. The findings can be helpful in preparing oral health providers to play a role in meeting this public health need. The study took place at a U.S. academic pediatric medical center in 2017. Participants were recruited at a Transgender Research Day and during Transgender Clinic sessions. English-speaking transgender adolescents ages 14 to 24 were invited to participate in a previously validated survey about their knowledge and behaviors related to oral sex. Of the 138 transgender youth invited to participate, 57 completed the surveys, for a 41% response rate. Most respondents reported feeling they understood the necessity of protection and consequences of oral sex but did not use protection. Over half of the participants (58%) said they had not had a physician, dentist, or parent speak to them about oral sex. Given the lack of standardized, evidence-based sex education, it is imperative that adolescents, particularly in highly vulnerable populations like transgender youth, receive accurate information about oral sexual contact. Dental schools should prepare future practitioners to address these issues with youth using a culturally competent, evidence-based approach., (© 2019 American Dental Education Association.)

Cystic fibrosis (CF) is a chronic life-shortening disease requiring significant coping. Spiritual belief relates to treatment behaviors. Little is known about spirituality's role in adults diagnosed as children, nor how it compares with adults diagnosed as adults. Adults over 18 years, diagnosed as children completed a questionnaire; some were randomized to also participate in an interview or daily phone diary to measure adherence. Qualitative analyses of 25 adults are presented. Participants reframed their disease as part of a Divine Plan, in which Divine assistance was conditional upon adherence. Linear regression models of spiritual constructs on airway clearance, nebulized medication, and exercise are presented. Adults diagnosed as children related spirituality to CF in ways both consistent and different from adults diagnosed as adults. Spiritual beliefs were related to adherence determinants and intentions. Increased understanding of the relationship between spirituality and health behaviors is important to providing person-centered care.

Background: Palliative transport is transport home of patients requiring critical care transport support with expectation of imminent death. Many parents prefer their child's death at home; evidence suggests death in the preferred location improves bereavement outcomes. Little is known about the clinical and demographic diversity of patients receiving palliative transport or the perspectives of participating staff., Aim: The objectives of the present study were to (1) characterize demographic and clinical factors involved in palliative transport, (2) identify challenges encountered, and and (3) ascertain staff perspectives., Design: Ten-year retrospective chart review and cross-sectional staff survey using study-specific questionnaire., Setting/participants: Twenty-three patients had palliative transport from a tertiary pediatric hospital from 2004 to 2013, of which 12 met inclusion criteria. Survey responses from 22 participating staff were received., Results: The cohort of 12 patients was 58% female, with a mean (range) age of 5.5 (0.01-22) years; racial composition was not significantly different than the palliative care clinical census over the same time period. Distances under 30 miles accounted for 50% of palliative transports. The majority of patients (75%) died within 2 days of palliative transport. Six unanticipated events are described. Staff reported palliative transport as a positive experience, regarding it as an important job component. However, 63% were dissatisfied or undecided about the plan should the patient die enroute, and 48% experienced some level of dissatisfaction with communication., Conclusion: Palliative transport is a feasible option for some patients. Staff experienced palliative transport as valuable, although process concerns were noted. This study underscores the importance of preparedness, training, and education for palliative transports.

Objectives: Pediatric palliative care promotes interdisciplinary, family-centered care when children are faced with diagnoses threatening length and/or quality of life. A significant knowledge gap remains in how to best match pediatric palliative care resources to palliate the psychosocial impact of a PICU admission. This study was designed to identify drivers of adverse post-PICU psychosocial outcomes related to social determinants of health to inform pediatric palliative care services and improve post-PICU psychosocial outcomes., Design: Modified Delphi technique to develop consensus regarding social determinants of health and clinical factors affecting post-ICU psychosocial outcomes., Setting: All Delphi rounds were via an electronically mailed survey link., Subjects: First-round participants were PICU and pediatric palliative care clinicians at the study institution. Subsequent rounds invited participants from national PICU and pediatric palliative care professional online listserves., Interventions: None., Measurements and Main Results: Consensus was defined a priori as items assigned a score greater than or equal to 4 (5-point scale) by greater than75% of respondents. One-hundred twenty-six surveys were returned and scored. Social determinants of health risk factors included child protective services involvement (91%), caregiver with intellectual disability (87%), lack of friend or family support (82%), caregiver with behavioral health diagnosis (81%), teenage caregiver (79%), transportation challenges (79%), and language/cultural barrier (76%). Clinical risk factors included new home ventilator (94%), new tracheostomy (90%), greater than or equal to 3 hospitalizations in the prior 6 months (88%), and greater than or equal to 3 hospitalizations in the prior 12 months (82%). Social determinants of health protective factors included extended family support (91%), caregivers in a committed relationship (79%), and caregiver optimism (78%). Respondents reported that pediatric palliative care services had the greatest impact on caregiver satisfaction with the healthcare system (90%) and increased family involvement with state social services programs (80%)., Conclusions: Consensus on candidate risk and protective factors for post-ICU psychosocial challenges and candidate pediatric palliative care-sensitive variables were identified. Further research is needed to operationalize and optimize a screening tool based on these consensus items and test it prospectively.

Objective: To describe the poorly understood burden of pulmonary exacerbations experienced by primary caregivers of children (aged 2-17 years) with cystic fibrosis (CF), who frequently require prolonged hospitalizations for treatment of pulmonary exacerbations with intravenous (IV) antibiotics., Study Design: In this prospective observational study, 88 caregivers in Germany, Ireland, the United Kingdom, and the US completed a survey during pulmonary exacerbation-related hospitalizations (T1) and after return to a "well state" of health (T2). The impact of pulmonary exacerbations on caregiver-reported productivity, mental/physical health, and social/family/emotional functioning was quantified., Results: Primary caregivers of children with CF reported significantly increased burden during pulmonary exacerbations, as measured by the 12-item Short-Form Health Survey mental health component and the Work Productivity and Activity Impairment: Specific Health Problem absenteeism, presenteeism, work productivity loss, and activity impairment component scores. Compared to the "well state," during pulmonary exacerbations-related hospitalization caregivers reported lower physical health scores on the Child Health Questionnaire-Parent Form 28. Quality-of-life scores on the Caregiver Quality of Life Cystic Fibrosis scale and total support score on the Multidimensional Scale of Perceived Social Support did not differ significantly between T1 and T2. More caregivers reported a negative impact on family/social/emotional functioning during pulmonary exacerbations than during the "well state.", Conclusions: Pulmonary exacerbations necessitating hospitalization impose a significant burden on primary caregivers of children with CF. Preventing pulmonary exacerbations may substantially reduce this burden., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Spiritual struggles (SSs) are distressing spiritual thoughts associated with poorer health outcomes. This study's purpose was to test feasibility, acceptability, and fidelity of an intervention to decrease SS of parents of children with CF. Parents screening positive for SS were enrolled and were randomized to intervention or attention-control condition. Intervention focused on intra-, inter-, and divine SS. Mixed linear modeling examined between-group differences. We present analyses of N = 23, and participants all showed decreased levels of SS. Acceptability was high; feasibility was higher in the intervention arm. GuideSS&#95;CF is acceptable and feasible and warrants development as a potentially efficacious intervention.

Background: Transgender and gender nonconforming (TGNC) people continue to experience health care disparities despite increasing visibility and acceptance. As far as is known, no information exists regarding their experiences with oral health care providers. In this study, the authors intended to understand how TGNC adolescents and young adults interface with their oral health care providers., Methods: A total of 36 participants, including patients 14 through 24 years of age and their caregivers, were recruited from the Transgender Health Clinic at the Cincinnati Children's Hospital, Cincinnati, Ohio. Interviews were conducted using a semistructured interview guide. All interviews were transcribed verbatim, coded, and analyzed for major themes using grounded theory methodology., Results: Overall, participants reported positive experiences with their oral health care providers. Those with negative experiences reported that the problems were corrected rapidly. Some participants reported issues processing insurance. Several indicated that stress and anxiety related to gender identity could be reduced via use of certain strategies., Conclusions: TGNC adolescents and young adults have minimal difficulty receiving oral health care. Oral health care providers can make minor modifications to intake forms and office design to improve patient experience and reduce stress and anxiety related to gender identity in the health care setting., Practical Implications: Although TGNC adolescents and young adults may not need oral health care specific to their identity, taking steps to provide a safe and comfortable treatment setting can improve patient experience for this vulnerable population., (Copyright © 2019 American Dental Association. Published by Elsevier Inc. All rights reserved.)

Purpose: To quantify HRQOL of TGN patients using the PedsQL 4.0 generic core scales, and to compare reported HRQOL of TGN adolescents with published data from comparison populations., Methods: Transgender children and adolescents (N = 142; 68% natal females) ages 6-23 years (M = 15.9, SD = 3.7) attending an outpatient clinic for TGN care at an academic pediatric hospital and caregivers of children and adolescents (N = 95) completed the PedsQL 4.0 generic core scales. Scores were compared with published scores for healthy adolescents and adolescents with 10 chronic diseases., Results: TGN youth reported significantly lower overall HRQOL (more than twice the clinically meaningful difference) compared to youth without chronic disease. Total self-reported TGN HRQOL (M(SD), 65.72(17.40)) was lower than all chronic disease comparison groups except for rheumatology and cerebral palsy. TGN youth reported physical functioning (M(SD), 75.33(22.87)) lower than or similar to chronically ill comparisons, but higher than rheumatology and cerebral palsy groups. Psychosocial functioning (M(SD), 59.87(17.83)) was lower than all comparison samples and similar to youth with cerebral palsy. Results were similar for parent proxy-reports of TGN youth HRQOL (LS means: 68.75; 95% CI 65.87-71.61 vs 66.16; 95% CI 62.87-69.45; p = 0.12)., Conclusions: TGN youth reported low HRQOL across all domains; most were significantly lower than healthy peers or peers with chronic diseases. Clinicians should understand the magnitude of TGN youth's low HRQOL and offer them and their caregivers resources to maximize their ability to achieve their full potential for healthy and productive lives.

Imbuing one's body with divine significance is associated with health-protective behaviors. The purpose of this study was to determine whether adolescents with a life-shortening, chronic disease (cystic fibrosis) who sanctified their bodies also received adequate sleep. Data from Daily Phone Diaries and questionnaire replies from 45 adolescents with cystic fibrosis (ages 11-19 years) were analyzed. A significant relationship between body sanctification and sleep was found, with between-gender differences. Body sanctification is an understudied construct which is associated with healthy behaviors.