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Introduction: Hospice and Palliative Medicine (HPM) fellowship training provides education on caring for patients from early childhood through adulthood. Yet, there are few guidelines about how to teach these key components, and more specifically the components of Pediatric Palliative Care (PPC), to fellows who have a variety of backgrounds prior to entering HPM fellowship., Methods: We created a curriculum in PPC that could be used with adult-track HPM fellows. We developed an outline for material to cover during each of the three weeks of PPC clinical rotations. We also created a longitudinal lecture series encompassing several foundational topics and concepts in PPC. We conducted "Just-in-Time" evaluation of the clinical rotation curriculum utilizing a critical reflection model as well as focus groups with fellows and faculty members to further explore the knowledge, attitudes, and perceptions of the entire PPC curriculum. Transcripts were coded Nvivo and template analysis was used to understand code distribution between and within focus groups., Results: Eight overarching codes emerged from the focus groups: "Staffing Issues," "Learning Structure," "Useful Material," "Topics Attending Contingent," "Time Management," "Teachable Moment," "Not Useful Material," and "Adherence to Teaching Materials.", Conclusion: The study revealed some limitations in the current curriculum design, such as its lack of consistency. However, it also highlighted several strengths, including the importance of flexibility and personal responsibility for learning. The results provide valuable insights into the experiences among fellows and educators at a single institution with a PPC Curriculum for adult-track HPM fellows., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: To ensure high-quality pediatric palliative care (PPC) and enable healthcare professionals (HCPs) to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their family, the Individual Care Plan (ICP) for PPC was developed. However, in practice, the ICP for PPC is not used for all children in need of PPC. Insight into why, for which problem and for which children HCPs wish to use an ICP in PPC is therefore necessary to assure that the ICP can be fully implemented in practice., Methods: Two semi-structured focus group interviews were held with 15 experienced healthcare professionals in PPC. Data were thematically analyzed., Results: Participants wish to use an ICP to collaboratively establish a plan with parents for the current and future care and treatment of the child. By doing so, they hope to achieve coordination and continuity of care, to achieve shared decision-making, and to support parents and other healthcare professionals in the care of the child. Participants think the ICP could also be used in the care for children with complex chronic conditions., Conclusion: The purposes for which healthcare professionals wish to use an ICP in PPC are broader than the purpose for which the ICP for PPC was developed. Future research should focus on whether the use of an ICP in PPC practice can achieve these purposes., (© 2024. The Author(s).)

Discovering some of the impact of the hidden curriculum (HC) while doing a postgraduate diploma in pediatric palliative care (PPC) in South Africa (SA), six graduates reflected on their formal and informal learning. To navigate the HC the transformative learning theory is used as a bridge connecting the formal and informal learning between interprofessional education where diversity is an enabler to enhance learning outcomes and shift perspectives to enhance patient care. The graduates were guided through the stages of the competency model to reflect on their learning experience. The authors believe that the experiential lessons reflected on, both clinical and psychosocial, can assist with not only strengthening the particular multidisciplinary needs of students, but also to align the HC and formal curricula. These lessons can also aid toward upscaling the need for PPC education in the SA context.

Context: Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists are not yet routinely integrated into pediatric palliative care (PPC) teams., Objectives: This special paper seeks to demonstrate distinctive contributions psychologists can offer to PPC teams, patients, and families, as well as highlight how psychologists enhance the work of their interdisciplinary PPC colleagues., Methods: Existing literature, consensus and policy statements, and recently developed competencies inform and provide evidence for the value of incorporating psychologists into PPC., Results: As children with serious illness are at risk for mental and physical health symptoms, psychologists' specialized training in evidence-based assessment and intervention allows them to assess areas of concern, create treatment plans, and implement nonpharmacological therapies targeting symptom management and promotion of quality of life. By improving patient and family outcomes, psychology involvement saves money. In addition to clinical care, psychologists are skilled researchers, which can help to advance PPC interdisciplinary research. Lastly, psychologists can play a valuable role in contributing to PPC team education, dynamics, and well-being., Conclusions: With strong skills in research, clinical care, education, and advocacy, pediatric psychologists are exceptionally equipped to provide care to children with serious illness and their families. Given their unique contributions, it is critical future efforts are directed towards advocating for the inclusion of psychologists into PPC, with the ultimate goal of improving care for children with serious illness and their families., Competing Interests: Disclosure The authors have no conflicts of interest to disclose., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: Pediatric psychologists have unique expertise to contribute to the care of youth with serious illnesses yet are not routinely integrated into pediatric palliative care (PPC) teams. To better define the role and unique skillset of psychologists practicing in PPC, support their systematic inclusion as part of PPC teams, and advance trainee knowledge of PPC principles and skills, the PPC Psychology Working Group sought to develop core competencies for psychologists in this subspecialty., Methods: A Working Group of pediatric psychologists with expertise in PPC met monthly to review literature and existing competencies in pediatrics, pediatric and subspecialty psychology, adult palliative care, and PPC subspecialties. Using the modified competency cube framework, the Working Group drafted core competencies for PPC psychologists. Interdisciplinary review was conducted by a diverse group of PPC professionals and parent advocates, and competencies were revised accordingly., Results: The six competency clusters include Science, Application, Education, Interpersonal, Professionalism, and Systems. Each cluster includes essential competencies (i.e., knowledge, skills, attitudes, roles) and behavioral anchors (i.e., examples of concrete application). Reviewer feedback highlighted clarity and thoroughness of competencies and suggested additional consideration of siblings and caregivers, spirituality, and psychologists' own positionality., Conclusions: Newly developed competencies for PPC psychologists highlight unique contributions to PPC patient care and research and provide a framework for highlighting psychology's value in this emerging subspecialty. Competencies help to advocate for inclusion of psychologists as routine members of PPC teams, standardize best practices among the PPC workforce, and provide optimal care for youth with serious illness and their families., (© The Author(s) 2023. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Context: Telemedicine has the potential to extend care reach and access to home-based hospice services for children. Few studies have explored nurse perspectives regarding this communication modality for rural pediatric cohorts., Objectives: The objective of this qualitative study was to learn from the experiences of rural hospice nurses caring for children at the end of life using telehealth modalities to inform palliative communication., Methods: Voice-recorded qualitative interviews with rural hospice nurse telehealth users inquiring on nurse experiences with telehealth. Semantic content analysis was used., Results: About 15 hospice nurses representing nine rural hospice agencies were interviewed. Nurses participated in an average of eight telehealth visits in the three months prior. Nurses were female with a mean age of 38 years and an average of seven years of hospice nursing experience. Five themes about telehealth emerged: accessible support, participant inclusion, timely communication, informed and trusted planning, and familiarity fostered. Each theme had both benefits and cautions associated as well as telehealth suggestions. Nurses recommended individualizing communication, pacing content, fostering human connection, and developing relationships even with technology use., Conclusion: The experiences of nurses who use telehealth in their care for children receiving end-of-life care in rural regions may enable palliative care teams to understand both the benefits and challenges of telehealth use. Nurse insights on telehealth may help palliative care teams better honor the communication needs of patients and families while striving to improve care access., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting on their child's future have had limited exploration. A clear understanding of their perspectives might help clinicians to implement advance care planning tailored to parental needs. This interpretive qualitative study using thematic analysis aims to identify how parents envision the future when caring for their seriously ill child. Single interviews and two focus groups were attended by 20 parents of 17 seriously ill children. Parents reported to focus on the near future of their child. However, their actions and deeper thoughts showed perspectives towards a further future. Future perspectives initial focused on practical, disease-related themes, but more existential elaborations, reflecting underlying life values, were also identified. Parents needed acknowledgement of their challenging situation, care tasks, and expertise as a precondition for sharing their deepest thoughts regarding the future of their child.Conclusion: When envisioning the future of their seriously ill child, parents tend to stay in the near future, whereas they value the opportunity to share further thoughts within a compassionate relationship with clinicians. What is Known: • Parents prefer open and honest information about their child's illness and prognosis and they value the concept of advance care planning, while they emphasize the need for an individualized approach. • Health care professionals see parental factors like unease and emotional burden as key barriers for advance care planning. What is New: • When envisioning the future of their seriously ill child, parents tended to stay close to the near future initially, with a focus on disease-related, practical themes. Ongoing conversations uncovered deeper, value-based elaborations towards the future. To engage parents in advance care planning, the future needs to be discussed in relation to the present and the past. • There is "no sharing without caring". Parents who felt cared for and acknowledged in their challenging context by clinicians, were open to share their perspectives on the future of their seriously ill child. To share deeper motives and values underlying goals and preferences for future care and treatment, parents need a stimulating attitude of listening and encouragement from clinicians to express their feelings.

Background: The World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian region, little is known about physician knowledge and perspectives on palliative care., Methods: The Assessing Doctors' Attitudes on Palliative Treatment survey was developed as an evidence-based and culturally relevant assessment of physician perceptions on palliative care integration into childhood cancer care in Eurasia. Iteratively tested by American and Eurasian palliative care experts, the survey was culturally adapted, translated, and piloted in English, Russian, and Mongolian. The survey was distributed to physicians caring for children with cancer. Fifteen statements were scored in accordance with WHO guidelines to evaluate provider knowledge. The statistical analysis was complemented by a qualitative analysis of open-ended responses., Results: This study received 424 responses from 11 countries in Eurasia. The mean alignment between provider perspectives and WHO recommendations was 70% (range, 7%-100%). Significant independent predictors of higher alignment included country, prior palliative care education, and greater experience with patient death. Respondents primarily described palliative care as end-of-life care and symptom management. Two-thirds of respondents (67%) reported not feeling confident about delivering at least 1 component of palliative care., Conclusions: This is the first study assessing physician perspectives and knowledge of palliative care in Eurasia and reveals wide variability in alignment with WHO guidelines and limited confidence in providing palliative care. Study findings will inform targeted educational interventions, which must be tailored to the local political, economic, and cultural context., (© 2020 American Cancer Society.)

Introduction: For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team that is mainly composed of nurses. However, only a small fraction of children receive pediatric palliative care and only a minority of them in a timely manner. The main aim was to identify barriers to the provision of pediatric palliative care in Swiss pediatric oncology. Method: This qualitative study consisted of five focus groups. In total, 29 pediatric oncology providers participated (13 nurses, 11 physicians, 4 psycho-oncologists, 1 social worker). Data were analyzed employing applied thematic analysis. Results: Analysis revealed eleven barriers: lack of financial resources, lack of prejob education regarding pediatric palliative care, lack of awareness in politics and policy making, absence of a well-established nationwide bridging care system, insufficient psychosocial and professional supervision for staff, understaffing, inadequate infrastructure of hospitals, asymmetry of factual and emotional knowledge between parents and providers, cultural aspects, irrational parental hopes, and "the unspoken." Discussion: Awareness should be raised for pediatric palliative care (in particular in demarcation from palliative care in adults) among politics and policy makers which could lead to increased financial resources that, in turn, could be used to improve bridging care, hospital's infrastructure, and team support. More flexibility for care determining factors is needed, for example, with respect to convening team meetings, short-termed staffing, and reimbursement at the interface between inpatient and outpatient services.

Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning (ACP) and circumstances of death in pediatric populations with a wide range of diagnoses. Objective: To determine the relationship between PPC involvement, ACP, and circumstances of death for pediatric patients. Design: A retrospective chart review of 558 pediatric patients who died between January 1, 2012 and December 31, 2016 was conducted. Descriptive statistics were used to characterize the sample. A multivariable logistic regression was used to obtain associations between PPC involvement and ACP. Setting: Large, multidisciplinary tertiary care center in a rural state. Measurements: Data abstracted for each patient included the following: demographic information, diagnosis, location of primary unit, hospice involvement, goals of care (GOC), code status, Physician Orders for Life-Sustaining Treatment (POLST) completion, and location of death. Results: Patients with PPC involvement were more likely to have had ACP addressed before death. After adjusting for covariates in the model, patients with PPC were more likely to have their GOC documented (odds ratio [OR] = 96.93), completion of POLST (OR = 24.06), do-not-resuscitate code status (OR = 7.71), and hospice involvement at the time of death (OR = 11.70) compared with those who did not receive PPC. Conclusions: Pediatric patients are more likely to have ACP addressed if they have PPC involvement. Patients with chronic complex conditions are most likely to receive palliative care.

Context: Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation., Objectives: Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics., Methods: Funded through a U.S. $1.6 million National Institutes of Health/National Cancer Institute grant 2010-2017, this 24-module curriculum was designed to teach primary palliative care. The target audience included interprofessional pediatric hematology/oncology providers and all other clinicians caring for seriously ill children., Results: The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. In addition, a one-day Professional Development Workshop was developed to teach EPEC-Pediatrics graduates, future "Trainers," thus becoming "Master Facilitators." Between 2012-May 2019, a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three Professional Development Workshops. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish. Participants overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Trainers subsequently anticipated improvements in patient care for children with serious illness at their home institutions., Conclusion: EPEC-Pediatrics has developed into the most comprehensive PPC curriculum worldwide. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019., (Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Background: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. Methods: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Results: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. Discussion: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.

Background: Respiratory therapists (RTs) are care providers in highly stressful work environments with limited time and resources for self-care. Mindfulness-based interventions teach non-reactive awareness to the present situation or the ability to respond versus react in the moment, to shift away from a physical and emotional stress response., Methods: Mindfulness-based group learning was offered during 2 regularly scheduled RT staff meetings for ∼30 min each session. Each meeting began and concluded with a distress assessment and with counting and recording respirations for 30 s., Results: This quality-improvement project revealed mindfulness-based interventions to be feasible and acceptable. Mindfulness intervention reduced RT team members' physical and emotional stress related symptoms (as measured by a 1-point median decrease in the self-administered distress assessment, with P = .001 in session 1) and increased sense of calm (as measured by participant breathing rate decrease by mean of two-points P = .001 in session 1 and session 2)., Conclusions: Mindfulness-based interventions were noted to be feasible and acceptable additions to RT staff meetings. These interventions have the potential to introduce breathing practices and mini mindfulness techniques., Competing Interests: The authors have disclosed no conflicts of interest., (Copyright © 2019 by Daedalus Enterprises.)

Objective: This study examines health care provider perspectives about barriers to pediatric palliative care for seriously ill children 15 years after an initial study within the same academic health system., Methods: Anonymous validated surveys were sent electronically to inpatient nursing unit distribution lists (n = 1315). Reminders were sent through e-mail twice over a two-month data collection period., Results: Response rate was 20.9% (275/1315) with 45.2% of responses from critical care units and 21.6% from hematology/oncology units. Of the participants, 58.2% (n = 160) had ≥10 years nursing experience, 58.5% (n = 161) had one to five patients die in the past 12 months, and 50.2% (n = 138) had one to five patients receiving subspecialty pediatric palliative care in the past year. Approximately one-half of the participants reported 3 of 26 barriers listed on the study survey as frequently or almost always occurring, including (1) family preference for more life-sustaining treatment than staff (n = 177, 64.8%), (2) family not ready to acknowledge incurable condition (n = 175, 64.1%), and (3) parent discomfort with possibility of hastening death (n = 146, 53.7%). Study findings were similar between 2002 and 2017, particularly in the extremes of the most and least commonly cited barriers., Conclusions: Barriers to palliative care for hospitalized children persist and commonly include perceptions that families deny, prefer, or have discomfort with forgoing life-sustaining treatments. Increasingly, studies have shown that families can be simultaneously hopeful and aware of their child's worsening health. Further palliative care education and research about these barriers and their impacts are necessary to support seriously ill children and their families.

Objective: Qualitative research is pivotal in gaining understanding of individuals' experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has interest in qualitative research in this area. Nonetheless, a limited number of such studies have included the first-person perspective of children. The aim of this article is to understand the contribution of previous qualitative research on pediatric palliative care that included the voices of children., Method: A systematic review of qualitative studies and a meta-summary were conducted. MEDLINE, CINAHL, PsycINFO, PsycARTICLES, and ERIC were searched without limitations on publication date or language. Eligible articles were qualitative research articles in which the participants were children ranging in age from 3 to 18 years.ResultWe retrieved 16 qualitative research articles reporting on 12 unique studies, and we selected two mixed-method articles. The meta-summary shows eight themes: the relationship with professional caregivers, pain and its management, "living beyond pain," the relationship between pediatric patients and their families, children's view on their treatment and service provision, meanings children give to their end-of-life situation, consequences of clinical decisions, and the relationships among children in pediatric palliative care and their peers.Significance of resultsThis meta-summary presents the "state of the art" of pediatric palliative care qualitative research on children and highlights additional research areas that warrant qualitative study.

Background:: Education and training for interdisciplinary pediatric providers requires training in principles of palliative and end-of-life (EOL) care. The experiences of bereaved parents can inform and enhance palliative care educational curricula in uniquely powerful and valuable ways. The objective of this study is to present an innovative palliative care educational program facilitated by trained bereaved parents who serve as volunteer educators in local and national palliative care educational forums and to describe how incorporation of bereaved parents in these educational forums affects participant comfort with communication and management of children at the EOL., Methods:: Parent educators underwent both general and session-specific training and participated in debriefings following each session. Survey tools were developed or adapted to determine how bereaved parent educators affected participant experiences in 3 different educational forums. Pre- and postsession surveys with incorporation of retrospective preprogram assessment items to control for response shift were used in the evaluation of institutional seminars on pediatric palliative and EOL care and role-play-based communication training sessions. Results from feedback surveys sent to attendees were used to appraise the participants' experience at the international oncology symposium., Results:: Involvement of trained parent educators across diverse, interdisciplinary educational forums improved attendee comfort in communicating with, and caring for, patients and families with serious illness. Importantly, parent educators also derive benefit from involvement in educational sessions with interdisciplinary clinicians., Conclusions:: Integration of bereaved parents into palliative and EOL care education is an innovative and effective model that benefits both interdisciplinary clinicians and bereaved parents.

Background: Caring for a child near the end of life (EOL) can be a stressful experience. Resident physicians are often the frontline providers responsible for managing symptoms, communicating difficult information, and pronouncing death, yet they often receive minimal education on EOL care., Objective: To develop and implement an EOL curriculum and to study its impact on resident comfort and attitudes surrounding EOL care., Design: Kern's 6-step approach to curriculum development was used as a framework for curriculum design and implementation., Setting/participants: Categorical and combined pediatric residents at a large quaternary care children's hospital were exposed to the curriculum., Measurements: A cross-sectional survey was distributed pre- and postimplementation of the curriculum to evaluate its impact on resident comfort and attitudes surrounding EOL care., Results: One-hundred twenty-six (49%) of 258 residents completed the preimplementation survey, and 65 (32%) of 201 residents completed the postimplementation survey. Over 80% of residents reported caring for a dying patient, yet less than half the residents reported receiving prior education on EOL care. Following curriculum implementation, the percentage of residents dissatisfied with their EOL education fell from 36% to 14%, while the percentage of residents satisfied with their education increased from 14% to 29%. The postimplementation survey identified that resident comfort with communication-based topics improved, and they sought additional training in symptom management., Conclusions: The implementation of a longitudinal targeted multimodal EOL curriculum improved resident satisfaction with EOL education and highlighted the need for additional EOL education.

Pediatric palliative care is a comprehensive treatment approach (physical, psychological, social, spiritual) for children living with life-threatening conditions. These patients and siblings, as well as children of ill parents, face extraordinary psychological challenges. Structured art techniques incorporated into psychotherapy can be powerful for children dealing with life-and-death realities. This article provides the rationale, instructions, and examples for 3 techniques that the author has adapted for children facing illness and bereavement. Although these art techniques are simple to administer, they frequently evoke complex and powerful responses and thus are intended for use by or in consultation with mental health professionals., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology., Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC ® -Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC., Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3-6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records., Results: Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI] = 1.17-2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI = 1.06-2.11), after adjusting for background variables., Conclusion: While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.

Background: Little is known about the composition, availability, integration, communication, perceived barriers, and work load of pediatric palliative care (PPC) providers serving children and adolescents with cancer., Objective: To summarize the structure and services of programs to better understand successes and gaps in implementing palliative care as a standard of care., Methods: Cross-sectional online survey about the palliative care domains determined by the Psychosocial Care of Children with Cancer and Their Families Workgroup., Subjects: A total of 142 surveys were completed with representation from 18 countries and 39 states., Results: Three-fourths of sites reported having a PPC program available for the pediatric cancer population at their center. Over one-fourth (28%) have been in existence less than five years. Fewer than half of sites (44%) offered 24/7 access to palliative care consultations. Neither hospital-based nor local community hospice services were available for pediatric patients at 24% of responding sites. A specific inpatient PPC unit was available at 8% of sites. Criteria for automatic palliative referrals ("trigger" diagnoses) were reported by 44% respondents. The presence of such "triggers" increased the likelihood of palliative principle introduction 3.41 times (p < 0.003). Six percent of respondents perceived pediatric oncology patients and their families "always" were introduced to palliative care concepts and 17% reported children and families "always" received communication about palliative principles. The most prevalent barriers to palliative care were at the provider level., Discussion: Children and adolescents with cancer do not yet receive concurrent palliative care as a universal standard.

Background: One goal of pediatric palliative care is to maintain quality of life for children and their families. Quality-of-life investigations may be enhanced by considering clinically important metrics in addition to statistical significance., Objective: The purpose of this study was to longitudinally evaluate the effect of time on quality of life and family impact for pediatric palliative care patients across all diagnoses and ages., Design: This prospective quality-of-life study included administration of a 23-item PedsQL™ Measurement Model to evaluate for physical, emotional, social, and cognitive dimensions of the child's quality of life and a 36-item PedsQL Family Impact Module to assess for the familial impact at time of initial palliative care consultation, Month 6, and Month 12., Setting/subjects: All pediatric patients who received a palliative care consultation in our Midwestern free-standing children's hospital over a five-year period were included in the longitudinal study (n = 87)., Measurements: Repeated measures ANOVA was used to investigate how proxy-reported quality of life and family impact changed with time with attentiveness to also follow trends in minimal clinically important difference (MCID) metrics., Results: The emotional domain showed a statistically significant positive trend over the first six months of palliative care involvement (p = 0.049), while the physical domain (p = 0.028) and daily activity (p = 0.039) showed a positive improvement for the full year. In using a standard of MCID, the physical, emotional, and cognitive domains improved in the quality-of-life scale and the communication, worry, and daily activity domains improved in the family impact scale over 12 months., Conclusions: In considering quality-of-life analyses for pediatric palliative care programmatic improvements, providers may consider analyzing not only for statistical significance in collective data sets but also for clinically important difference over time.

Objective: Introduction: In order to develop such a relatively new type of medical care in Ukraine, as pediatric palliative care, first of all, qualified medical workers are needed. The aim: to assess the awareness of pediatric palliative care among healthcare workers providing medical services to children., Patients and Methods: Materials and methods: It was carried out a survey at health facilities of Ivano-Frankivsk region, which provided medical care for children. It was interviewed 578 healthcare workers, among them were generally practitioners - 131, primary care pediatricians - 52, pediatricians-specialists - 36, health care managers - 78, nurses - 281. The half of the respondents (57.2%) had work experience more than 20 years., Results: Results: It was established that every fourth respondent (25.3%) did not know what is mean of pediatric palliative care. At the same time, the main object of its delivery was considered to be patients with cancer (71.5%), and not with incurable chronic diseases (54.8%). Only 59.7% of respondents knew that palliative care (PC) should begin with the diagnosis of an incurable disease, and not at the end of life, as well as half (52.6%) of them knew that the relatives of seriously ill children are object of PC. The majority of respondents recognized the lack of their knowledge of pediatric palliative care (85.8%). All answers differed depending on the position of respondents (p%#60;0.05). However, regardless of this, almost all respondents (94.5%) expressed their desire to receive proper knowledge of pediatric palliative care., Conclusion: Conclusion: It was established lack of knowledge on pediatric palliative care among medical workers served children. The majority of respondents recognized the lack and need of knowledge on pediatric palliative care. Overall level of knowledge among healthcare workers about palliative care was poor, and it is necessary to improve it.

The purpose of this study was to explore the experience of decision making in the care of children with palliative care needs in Jordan, from the perspective of their mothers. This study employed a collective qualitative case study approach. Data were collected in 3 pediatric wards in a Jordanian hospital. The study used 2 data collection methods: participant observation (197 observational hours) and 56 semi-structured interviews with 24 mothers, 12 physicians and 20 nurses. The findings show how Jordanian mothers seek to transfer the role of decision making to physicians, as they perceive themselves to be unable to make decisions about critical issues related to the treatment of their children. Mothers had a widespread apprehension of "future guilt," especially when they feared that any decisions they might make could have an adverse impact on their children. Contrary to the predominant pattern, some mothers took a proactive approach towards decision making about their children's treatment. These mothers requested detailed information from primary physicians and sought different sources of knowledge such as second opinions, reading online resources, or talking to other parents who had a child with similar circumstances. The study concludes that mothers prefer to involve physicians in decisions about their children's healthcare and treatment to eliminate their fear of probable future guilt; this modifies any tendency to autonomously decide for their children. These findings are underpinned by the Jordanian culture in which doctors' opinions are highly regarded.

Objective: Pediatric hospice has been the adoption of several service provision models in highly developed countries such as UK, Germany, Australia or Canada for a few decades, yet it has seldom been the case in the Asian Continent. This study aimed to evaluate the newest challenge for the children with Life-threatening illness (LTI) and described the characteristic of pediatric palliative care at the first pediatric hospice in Japan., Methods: A retrospective review of all patients at our pediatric hospice in these three years was conducted. Of the 294 cases reviewed, 269 cases were eligible for analysis., Results: We reviewed 269 patients admitted during the first three years. Most patients required intensive medical intervention. Patients were hospitalized in our pediatric hospice not only for end-of-life care (EOL), but also for respite care. Only 7% of the patients were with cancer. To support children and family to make the most of their time together, we provided a range of medical and recreational care. It is expected that the pediatric hospice will extend and establish cooperation with other hospitals or community services., Conclusion: Three years' experience of pediatric palliative care at the first pediatric hospice in the Asian Continent is encouraging. Further experience and improved communication with other pediatric service providers as well as their education in palliative care will enhance the recognition of the capacity of our hospice and support the needs of more children. Furthermore, we would like to introduce the idea of pediatric hospice and spread it throughout the Asian Continent in the future., (Copyright © 2017 The Japanese Society of Child Neurology. Published by Elsevier B.V. All rights reserved.)

Background: End-stage renal disease (ESRD) affects nearly 1400 new children each year in the United States. Morbidity and mortality rates remain high for pediatric patients with ESRD, including those that have received a renal transplant., Objective: To better understand ESRD patients referred to palliative care, including their physical symptoms, topics discussed, and themes emerging during initial palliative care consultation., Design/subjects: This study is a retrospective chart review of pediatric ESRD patients who received a palliative care consult. Physical symptoms, core topics, and themes were identified by the interprofessional study team., Results: The study team found 35 patients met inclusion criteria during the study period. The most common standard palliative care metric noted was "complex or time-intensive communication and interdisciplinary social support." Pain was the most common physical symptom addressed with goals of care and communication the most common topics discussed. Themes emerging described the emotional distress of patients and parents as well as prognostic discussions., Conclusions: This study demonstrates one institution's experience with pediatric ESRD patients undergoing consultation with the pediatric palliative care service. More research is necessary in this population to better describe the best focus for palliative care teams.

Background: Studies have shown that pediatricians in all stages of training are uncomfortable managing patients at end of life. Our goal was to create and test a portable reference card to improve pediatric resident education in comprehensive care for children nearing end of life., Methods: We evaluated the impact of the Pediatric End-of-Life Care Management Reference Card on residents' perceived comfort and knowledge through pre- and post-intervention surveys. The preintervention questionnaires and pocket cards were distributed to all first- and second-year residents, and then a follow-up survey was provided six months later. Based on Likert scales, questions focused on self-reported understanding of palliative care principles and knowledge regarding and comfort in performing end-of-life symptom management., Results: Twenty-six pediatric residents completed pre- and post-intervention surveys. Following receipt of the reference card, no significant changes were noted consistently across all groups of residents. The majority of improvements were noted when comparing second to third year residents, including knowledge and comfort related to pain management, comfort in managing secretions and nausea, and documentation following death. The first to second year residents demonstrated improvement in knowing what language to use to tell a family that their child has died., Conclusion: This study demonstrates that a portable reference card may be a convenient, simple, and useful component of education for pediatric residents in end-of-life care management. This reference card is a foundation from which to develop a standardized educational tool. Additional research is required to assess the impact of this type of intervention in pediatric palliative care education.

Aim: The ability to communicate serious news to patients and families in a caring and compassionate way is a critical skill for physicians. This study explores the impact of a novel communication skills workshop that included bereaved parents in role play on pediatric residents' confidence to communicate serious news., Methods: Following the workshop, pediatric residents were surveyed to assess their perceived efficacy of the educational intervention. The survey included anchored response and open-ended questions to yield qualitative and quantitative results., Results: After completing the workshop, residents' confidence in discussing goals, managing emotions, and expressing empathy all increased significantly. Residents reported that the inclusion of bereaved parents was beneficial since it made the experience more realistic. In addition, they believed their ability to communicate with patients and families had improved., Conclusions: Including bereaved parents in this communication skills workshop improved the residents' confidence in discussing serious topics and enhanced the reality of the experience.

Aims: In France, most of children die in the hospital. This national survey aimed to achieve better understanding of end-of life care in specialized medical pediatrics departments for children facing the end-of-life, identify the available resources, put forward the difficulties encountered by professionals and describe end-of-life paths of children who died in these departments., Material and Methods: This study is based on a nationwide survey conducted among all existing specialized medical pediatrics departments (onco-haematology, neurology, reanimation) in France in 2015., Results: Among 94 specialized medical pediatrics departments in France, 53 participated in our survey (response rate=56%). At the time of the survey, 13% of inpatients were facing the end-of-life. Regarding training, 13% of departments did not have personnel trained in palliative care and 21% did not set up any professional support. However, when taking care of a child's end of life in 2014, 77% of these departments solicited a regional resource team of pediatric palliative care. This survey helps describe 225 end-of-life paths of children decease of a terminal illness in the specialized pediatrics departments. Seventy-two percent suffered from refractory symptoms before their death, 64% were concerned by a terminal sedation and 75% by a limitation of life-sustaining treatment decision., Conclusion: End-of-life care is a reality for specialized pediatrics departments. The frequency of major and refractory symptoms often requires the completion of sedation. The resources of service are acceptable but some deficiencies have been noted especially concerning training and support for caregivers, adaptation of premises or family support., (Copyright © 2017. Published by Elsevier SAS.)

Context: The need for children's palliative care (CPC) globally is unknown. To understand the scope of the need and to advocate to meet it, more accurate estimates are needed., Objectives: The objective of this study was to create an accurate global estimate of the worldwide need for CPC based on a representative sample of countries from all regions of the world and all World Bank income groups., Methods: This work builds on previously published methods developed by the International Children's Palliative Care Network, United Nations Children's Fund, and World Health Organization and tested in three African countries. The study used a cross-sectional design with quantitative data obtained from primary and secondary data sources. Estimation of the need used prevalence data from the Institute for Health Metrics and Evaluation, mortality data from the World Health Organization for the specific diseases known to require CPC, and Joint United Nations Programme on HIV/AIDS (UNAIDS) data on HIV prevalence. Representative data were analyzed for 23 countries representing 59.5% of the world's population., Results: The findings show estimated need for CPC ranged from almost 120 per 10,000 children in Zimbabwe to slightly more than 20 per 10,000 in the United Kingdom. Overall, among the over 21 million with conditions that will benefit annually from a palliative care approach, more than eight million need specialized CPC worldwide., Conclusion: The estimation of need for CPC is a critical step in meeting the needs of children with life-threatening conditions and provides a sound platform to advocate for closure of the unacceptably wide gaps in coverage., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

At least 20 million children would benefit from Pediatric Palliative Care (PPC) annually, and 8 million children would need specialized PPC services. In the USA alone, more than 42,000 children 0-19 years died in 2013, fifty-five percent of them infants younger than 1 year. This article aims to critically review eight common assumptions, myths and barriers, which may hinder the implementation of PPC into the care of a child with advanced serious illness. Interdisciplinary PPC is about matching treatment to patient goals and is considered specialized medical care for children with serious illness. It is focused on relieving pain, distressing symptoms, and stress of a serious illness and appropriate at any age and at any stage, together with curative treatment. The primary goal is to improve the quality of life of the child and his or her family. Emerging evidence shows, that palliative care involvement results in improved quality of life as well as prolongation of life., (Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.org.)

Background: Prior research has shown that less than 40% of pediatric program directors believe their graduating residents competent in palliative care. While many curricula have been developed to address this need, few have demonstrated improved comfort and/or knowledge with palliative care principles. The purpose of this study was to test a pocket card educational intervention regarding resident knowledge and comfort with palliative care principles., Methods: Pocket reference cards were created to deliver fundamentals of pediatric palliative care to resident learners; didactics and case studies emphasized principles on the cards. Self-reported comfort and objective knowledge were measured before and after the curriculum among residents., Results: Of 32 post-graduate year 2 (PGY2) residents, 23 (72%) completed the pre-test survey. The post-test was completed by 14 PGY2 residents (44%) and 16 of 39 PGY3/4 residents (41%). There was improvement in comfort with communication, as well as pain and symptom management among the residents. Knowledge of palliative care principles improved in part, with only a few survey questions reaching statistical significance. 100% of respondents recommended the cards be provided to their colleagues., Conclusion: This longitudinal curriculum, designed specifically for pediatric residents, was built into an existing training program and proved to be popular, feasible, and effective at improving comfort with basic palliative care principles., (© The Author(s) 2015.)

Context: Few data exist regarding clinician preparedness to participate in advance care discussions (ACD) and the practices surrounding these discussions for children with life-threatening conditions., Objectives: We sought to understand pediatric clinician preparedness to participate in ACD and the practices surrounding these discussions., Methods: A survey was administered to assess clinician attitudes and behaviors regarding ACD., Results: Two hundred sixty-six clinicians (107 physicians and 159 nurses) responded to the survey (response rate 53.6%). Seventy-five percent of clinicians felt prepared to participate in ACD. Most clinicians believed they were prepared to express empathy (98.8%), discuss goals of care for an adolescent patient (90.3%), and elicit a parent's hopes (90.3%). Conversely, several felt unprepared to discuss resuscitation status with school-aged (59.7%) and adolescent (48.5%) patients and to conduct a family conference (39.5%). The most frequent topics addressed were: parents' understanding of the patient's illness (75.5%), primary goals of the parent (75.1%), and the parents' understanding of prognosis (71.1%). Conversely, the topics least commonly discussed were as follows: belief system of the patient/family (22.0%), patient's hopes (21.2%), and the patient's perceptions of his/her quality of life (19.8%). Notably, 40% of clinicians believe that caring for patients with poor prognoses is depressing, and this was more common among less-experienced clinicians (P = 0.048)., Conclusion: Many clinicians believe they are prepared to participate in ACD, but practices are not consistent with expert recommendations for optimal ACD. Educational interventions aimed at improving clinician knowledge, attitudes, and behavior, and greater clinician support may enhance health care provider ACD preparedness and skills., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: The objective of this conceptual paper was to present important constructs in attachment theory as they apply to parent and caregiver behavior in pediatric palliative care. Clarification of these constructs is provided with specific reference to their clinical application as well as their reflection in current empirical literature. Social attachment theory is proposed as a developmentally contextual model for the study of parenting in pediatric palliative and end-of-life care., Method: A comprehensive search was conducted of pertinent literatures. These included classic as well as recent theory and research in attachment theory in addition to the empirical literatures on parent and family experience in pediatric palliative care, serious illness, and beyond to parental bereavement. Other relevant literature was examined with respect to the phenomena of concern., Results: The empirical literature in pediatric palliative care supports the use of central concepts in attachment theory as foundational for further inquiry. This is evidenced in the emphasis on the importance of parental protection of the child, as well as executive activities such as decision making and other prominent parental operations, parental psychological resolution of the child's diagnosis and illness as well as coping and meaning making, and the core significance of parental relationships with providers who provide secure-base and safe-haven functions., Significance of Results: The promise for developing integrated, conceptually based interventions from construction through implementation is of urgent importance to children and families receiving pediatric palliative care services. Focusing on key parental behaviors and processes within the context of a well-studied and contextually appropriate model will inform this task efficiently. The attachment paradigm meets these criteria and has promise in allowing us to move forward in developing well-defined, inclusive, and conceptually grounded protocols for child and family psychosocial research, practice, and education in this specialty.

Background: Legislative measures increasingly require consideration of pediatric inpatients for Medical Orders for Life-Sustaining Treatment., Aim: To explore pediatric clinicians' experiences with life-sustaining treatments prior to the Medical Orders for Life-Sustaining Treatment mandate and to describe clinician and family concerns and preferences regarding pediatric Medical Orders for Life-Sustaining Treatment., Design: Clinician surveys and clinician and parent focus groups., Setting/participants: Pediatric clinicians and parents from one of Maryland's largest health systems., Results: Of 96 survey respondents, 72% were physicians and 28% were nurse practitioners. A total of 73% of physicians and 34% of nurse practitioners felt able to lead discussions about limiting therapies "most" or "all" of the time. A total of 75% of physicians and 37% of nurse practitioners led such a discussion in the prior year. A total of 55% of physicians and 96% of nurse practitioners had written no order to limit therapies in the past year. Only for children predicted to die within 30 days did >80% of clinicians agree that limitation discussions were warranted. A total of 100% of parent focus group participants, but 17% of physicians and 33% of nurse practitioners, thought that all pediatric inpatients warranted Medical Orders for Life-Sustaining Treatment discussions. Parents felt that universal Medical Orders for Life-Sustaining Treatment would decrease the stigma of limitation discussions. Participants believed that Medical Orders for Life-Sustaining Treatment would clarify decision making and increase utilization of palliative care. Medical Orders for Life-Sustaining Treatment communication skills training was recommended by all., Conclusion: A minority of clinicians, but all parents, support universal pediatric Medical Orders for Life-Sustaining Treatment. Immediately prior to the Medical Orders for Life-Sustaining Treatment mandate, many clinicians felt unprepared to lead limitation discussions, and few had written relevant orders in the prior year. Communication training is perceived essential to successful Medical Orders for Life-Sustaining Treatment conversations., (© The Author(s) 2015.)

In 2006, hospice and palliative medicine (HPM) became an officially recognized subspecialty. This designation helped initiate the Accreditation Council of Graduate Medical Education Outcomes Project in HPM. As part of this process, a group of expert clinician-educators in HPM defined the initial competency-based outcomes for HPM fellows (General HPM Competencies). Concurrently, these experts recognized and acknowledged that additional expertise in pediatric HPM would ensure that the competencies for pediatric HPM were optimally represented. To fill this gap, a group of pediatric HPM experts used a product development method to define specific Pediatric HPM Competencies. This article describes the development process. With the ongoing evolution of HPM, these competencies will evolve. As part of the Next Accreditation System, the Accreditation Council of Graduate Medical Education uses milestones as a framework to better define competency-based, measurable outcomes for trainees. Currently, there are no milestones specific to HPM, although the field is designing curricular milestones with multispecialty involvement, including pediatrics. These competencies are the conceptual framework for the pediatric content in the HPM milestones. They are specific to the pediatric HPM subspecialist and should be integrated into the training of pediatric HPM subspecialists. They will serve a foundational role in HPM and should inform a wide range of emerging innovations, including the next evolution of HPM Competencies, development of HPM curricular milestones, and training of adult HPM and other pediatric subspecialists. They may also inform pediatric HPM outcome measures, as well as standards of practice and performance for pediatric HPM interdisciplinary teams., (Copyright © 2014 by the American Academy of Pediatrics.)

The interdisciplinary approach is a cornerstone of a well-functioning pediatric palliative care team. These teams are most often available as an inpatient consultation service, are composed of professionals representing multiple disciplines, and are used during the illness course of a child with life-threatening and chronic complex conditions, especially during challenging health care decision-making near end of life. This article reviews the current structure of the palliative care team, explores opportunities for inclusion of other vital team members, and proactively identifies the challenges that may occur when involving more providers in a child's and family's care., (Copyright © 2014 Elsevier Inc. All rights reserved.)

Background: The perspectives of children with life-threatening or life-limiting (LT/LL) conditions have predominantly been conveyed through their parents rather than heard from the children themselves. Despite an increase in studies focusing on children's perspectives in pediatric palliative care, this research remains limited, particularly in including children who are unable to express themselves orally. Objective: This study seeks to address gaps in existing knowledge, especially the limited inclusion of children's perspectives and the exclusion of children with communicative and cognitive disabilities. The aim of this study was to explore the lived experiences of children living with LT/LL conditions. Design: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice. Methods: Twelve children with cancer or genetic conditions participated. Due to the children's varying cognitive and communicative abilities, multiple data collection methods were employed to capture the children's perspectives, including interviews, interactions, descriptions of the children's non-verbal expressions, and an adapted photo elicitation method. Data were analyzed using thematic analysis. Results: The findings showed that the children's attention revolved around life rather than illness. The analysis revealed the presence of three themes: wanting to engage in life, being dependent on familiar relations, and the importance of cherished items. Conclusion: Professionals across various levels within pediatric palliative care should acknowledge children's desire to engage in life despite serious illness and facilitate participation. Practices should be implemented to support children's agencies and expressions of what is important to them. This recognition can guide care plans and interventions at all levels of pediatric palliative care when a child is living with an LT/LL condition. The study emphasizes that children with LT/LL conditions are children first and foremost, with a fundamental need to participate in meaningful activity, just like any other child. [ABSTRACT FROM AUTHOR]

Context: As pediatric palliative care (PPC) expands within institutions and nationally, little guidance is available on building outpatient programs. Objectives: We asked outpatient PPC (OPPC) program leaders in the United States about clinic development experiences to gather advice for growing programs. Methods: As part of a larger OPPC study, 48 freestanding children's hospitals with inpatient PPC programs were invited to complete a survey on OPPC. Self-selected participants were sent a follow-up survey soliciting free-text responses about development experiences. Quantitative data were analyzed with descriptive statistics. Qualitative data underwent inductive content analysis. Results: Thirty-six hospitals completed the initial survey, and 28 (78%) reported practicing clinic-based OPPC. Twenty-two of 28 completed program development questions. More than half (12/22, 55%) recommended a minimum total billable full-time equivalent (FTE) ≥3 before expanding into the outpatient setting. About two-thirds (14/22, 64%) suggested a minimum billable FTE ≥4 for 24/7 coverage. Half (50%) reported that their program grew from subspecialty clinics, most frequently hematology-oncology (10/11, 91%). Half (50%) placed initial limits on referrals, with many restricting schedule availability (7/11, 64%). Six of 12 participants (50%) willing to share more about their development experience completed a follow-up survey, from which three themes emerged: program logistics, expectations and boundaries, and establishing role and workflow. Participants focused advice on slow programmatic growth to optimize sustainability. Conclusion: Program leaders offer tangible guidance informed by their OPPC development experience. Future work is needed to leverage this advice within institutions to promote resilient and sustainable PPC growth. [ABSTRACT FROM AUTHOR]

Background: Children with complex and chronic conditions receiving palliative care will likely experience many transitions during their life and their treatments. Transition periods for children with life-limiting conditions and their families can be bewildering and highly anxiety-inducing. However, clinical observations seem to point to a more heterogenous care offer, including a lack or discontinuity of services, at the expense of their quality of life. Objective: This paper aims to establish a portrait of the existing literature and identify research gaps on the multiple transitions experienced by this population. Design: A scoping review is provided, following a PRISMA protocol. MEDLINE, PubMed and CINAHL were consulted. The search strategy is based on three key concepts: (1) palliative care/complex condition, (2) child/adolescent, and (3) transition. Articles were screened with the help of Covidence. Results: A total of 72 articles are included for analysis. The aimed population is either identified by age group or by medical status. Respondents are most often parents rather than the children themselves. Transitions include: reaching adulthood, changes in care environment, changes in medical status, and school integration. Conclusion: The discussion notices a definitional murkiness about transitions and highlights the fact that the multifaceted and complex nature of transition over time is largely ignored. New research should involve a diversity of participants and include children's voices. Recommendations include clearer concept definitions, health care policies that adopt an ecosystemic approach, and professional training in the systemic family approach in palliative care. [ABSTRACT FROM AUTHOR]

Introduction: Providers working with children who are dying are especially prone to burnout. The enhancement of human flourishing in providers may mitigate burnout and improve quality of care. However, the relationship between job satisfaction and human flourishing has not been well studied. This project explores factors that promote human flourishing among caregivers working with children in pediatric palliative care in South Africa. Methods: A convenience sample of caregivers working in pediatric palliative care were invited to complete an anonymous, confidential survey. The survey also included open-ended questions to explore opinions and attitudes about job satisfaction, struggles, and coping. Results: Twenty-nine people from a variety of occupations and work environments completed the survey. The prevalence of burnout was 3/29 (10%). Life satisfaction (an indicator of flourishing) was associated with private religious activities (r =.38, P <.05), and carrying religion into all aspects of life (r =.44, P <.05). Burnout was not associated with life satisfaction, although power was limited. Qualitative analysis of open-ended questions revealed the following themes as factors contributing to satisfaction at work (flourishing): being able to make a difference, finding meaning and purpose, having a relationship with the children and their families, and working within the context of a multi-disciplinary team. A number of challenges to this work were also identified, including lack of resources, problems within the team, and the emotional demands of care. Conclusions: Despite job stress and the difficult work of caring for terminally ill children, several factors were associated with flourishing. These findings may help to enhance the flourishing of caregivers in the resource-challenged setting of pediatric palliative care in South Africa. [ABSTRACT FROM AUTHOR]

Abstract Background In pediatric palliative care, the main caregiver is primarily responsible for managing pharmaceutical therapies. Few data are available regarding the influence of this burden on quality of life in terms of time, concerns as well as a considerable risk of administration errors and adverse effects. This study aims to investigate how caregivers prepared and administrated medication, including errors and associated expectations, to identify improvement interventions. Methods Between October 2022 and March 2023, a descriptive single-center survey study was carried out in the tertiary care pediatric palliative center of the Padova University Hospital. Participants were the caregivers of the patients followed by our center up to 23 years old, receiving at least one drug daily and who cannot self-administer their therapy. The questionnaire consisted of 18 multiple-choice and semi-closed questions, grouped into 4 main topics: therapy preparation, therapy administration, administration errors and therapy assessment. Results A total of 100 caregivers responded to the survey. Mothers represented the main caregiver (91%). The prevalence of polypharmacy was 67% across the patients. 52% of caregivers handled prescriptions at least three times per day and for 32% it took to prepare them more than 5 min each time. Only 59% reported to have been trained for preparing and administrating drugs. 14% reported having made at least a drug administration error due to the tiredness or the complexity of therapeutic regimens in the preceding three months. Nearly one caregiver out of three felt their child was using too many drugs. 73% positively welcomed the possibility of having clinical pharmacist-led counseling. Conclusions Many caregivers of pediatric palliative care patients frequently have trouble planning, preparing and delivering pharmacological therapy to their children. Attempting to simplify medication regimens, choosing formulations that are simpler to administer and measure, investing in improved caregiver training, talking about therapies with carers, and involving clinical pharmacists to clarify their doubts could be all potential strategies to improve this condition and reduce their burden.

Background: PalliPed is the first Italian nationwide project aimed at describing the characteristics of patients accessing specialized pediatric palliative care (PPC) and their families, in the main care settings (hospice, home care, and hospital). The project's secondary aim is to assess the extent and quality of regional PPC networks/facilities and the number of dedicated resources. In this article, we present the results of the first part of the project. Methods: All Italian PPC centers/facilities were invited to participate in the project. Children and young adults in the care of the specialized PPC networks/structures as of 24 October, 2022, including prenatal care, were involved. Children's eligibility for specialized PPC was assessed according to the Assessment Form for Complex Clinical Needs in Pediatrics (ACCAPED Scale) and after a multidisciplinary assessment by the healthcare team. Data were collected through an online survey. Results: A total of 867 patients were described. The lack of adequate specialized PPC service emerged, according to the available estimate of specialized PPC needs, as well as the need for improved referral to PPC by pediatricians or territorial services, particularly for infants and oncological patients. More family support measures also seem necessary, particularly for the mothers. Healthcare providers' communication skills should be improved to ensure greater involvement of patients and families in care decisions. Conclusions: This analysis represents the first step toward defining a constantly updated database for the census and monitoring of specialized PPC activities at the national level. This research model can be extended to other realities in different countries, allowing comparison of different care models. [ABSTRACT FROM AUTHOR]

Objectives: Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care. Methods: In this cross-sectional study, the emotional well-being of 30 children with a mean age of 10.8 years (standard deviation [SD] = 6.1) is evaluated. Children, or parents where necessary, evaluate their situation with a question about emotional well-being on a 0–10 visual analog scale. For each child, a health professional also rates the child's emotional status using the same scale. Results: The average child's emotional well-being score provided by children or parents was 7.1 (SD = 1.6), while the average score given by health professionals was 5.6 (SD = 1.2). Children or parents graded the children's emotional well-being significantly higher than professionals (t -test = 4.6, p -value < .001). Health professionals rated the children's emotional well-being significantly lower when the disease status was progressive than when the disease was not (t -test = 2.2, p -value = .037). Significance of results: Children themselves, or their parents, report more positive evaluations of emotional well-being than health professionals. Sociodemographic and disease variables do not seem to have a direct influence on this perception, rather it is more likely that children, parents, and professionals focus on different aspects and that children or parents need to hold on to a more optimistic vision. We must emphasize that when this difference is more pronounced, it can be a warning sign that further analysis is required of the situation. [ABSTRACT FROM AUTHOR]

Background: The Individual Care Plan (ICP) for pediatric palliative care translates the general guideline recommendations into a personalized plan for the child. Various documents exist in pediatrics globally, aimed at facilitating anticipatory care or coordinating end-of-life care. The ICP aims both, but user experiences have not been studied post-development. Objective: The overall aim is to enhance knowledge and understanding of the content of the ICP from the perspectives of parents and healthcare professionals (HCPs). Design and method: We conducted a mixed-method study using a convergent parallel design consisting of questionnaires and individual and focus group interviews among parents and HCPs having user experience with the ICP. The questionnaire and interview data were analyzed separately. Quantitative data were descriptively analyzed using mean, ±SD, and median. Qualitative data were thematically analyzed. A narrative approach and joint display were used to describe the results. Results: In total, 27 parents and 161 HCPs participated. Overall, the content of the ICP was seen as important and complete, but changes and additions were called for on language, structure, and content. The chapter on the needs and wishes of child and parents was considered most important. HCPs would like to see this chapter expanded to incorporate more advance care planning outcomes, and parents wished for this chapter to reflect better who their child is. HCPs mentioned missing a chapter for palliative sedation, mainly to guide other HCPs. The ICP was appraised as not user-friendly and might possibly improve by making the ICP available in a secure digital environment. Conclusion: To meet the needs of parents and HCPs considering importance and completeness of the content of the ICP and its user-friendliness, changes are necessary in the content of the ICP, and preferably the ICP should be made digitally available. Although various documents exist globally to facilitate anticipatory care or coordinating end-of-life care, it appears that the combination of describing the values and preferences of the child and parents, along with medical decisions and life-sustaining treatments, makes the ICP a unique and comprehensive care plan. [ABSTRACT FROM AUTHOR]

Background: The current Italian scenario of pediatric palliative care (PPC) services is characterized by inadequate coverage of the territory. Therefore, it is important to improve the referral of patients to the most appropriate setting (community care, general PPC, or specialized PPC) and to improve the delivery of PPC care. Methods: Aiming at obtaining information about the referrals to the Padua Pediatric Hospice that could help estimate the investments needed to improve the provision of care, a retrospective analysis has been carried out. The rate of proper referral and discharge, the number of patients followed at the hospice, the mortality rate, and the length of follow-up were analyzed, and, when possible, data were stratified by oncological and non-oncological diseases. Results: The analysis showed that of the 870 patients referred to the Padua Pediatric Hospice between 2008 and 2022, 76% were affected by non-oncological conditions. 82% of patients referred were taken in charge and most of the remaining patients have been inappropriately referred. The analysis showed a growing number of total referrals, which increased by 195% from 2008 to 2022. An increase in proper referrals and referrals of non-oncological patients was observed alongside a decrease in oncological patient referrals and a trend toward a decrease in discharge rates. A decreased mortality was observed in patients with non-oncological conditions, with only 6% of deceased patients in 2022. Moreover, a longer survival with a median follow-up length of 43 months was observed among patients with non-oncological conditions who were followed up at the Padua Pediatric Hospice for more than 12 months. Conversely, the short survival rate observed for oncological patients suggests that those patients should have been referred to PPC earlier to benefit from palliative care for longer periods. Conclusions: Considering these data, it is expected that the number of patients needing PPC services will steadily increase in the next years. Hence, there is a need to invest resources to provide the best care delivery model encompassing specific pathways for the transition into adulthood, the establishment of networks within all the Italian regions, and an efficient referral to the more suitable setting of care. [ABSTRACT FROM AUTHOR]

Background/Objective: The Individual Care Plan (ICP) for pediatric palliative care was developed to provide person-centered care for the individual child and family. Currently, a lack of clarity remains regarding the use and function of the ICP in daily practice. To further implement the ICP, it is important to identify how parents and healthcare professionals use the ICP and which obstacles or benefits are experienced. Methods: This mixed-method study used qualitative interviews and quantitative questionnaires in (bereaved) parents and healthcare professionals with experience with the ICP. Results: Parents and healthcare professionals used the ICP to establish a joint plan for care and treatment of the child to coordinate care and to achieve child- and family-centered care. This includes both obstacles that complicate achieving care goals and benefits that make it easier. Furthermore, responsibilities for the ICP remained unclear, and there was no set point in the illness trajectory for drawing up the ICP. Conclusions: Parents and healthcare professionals use the ICP as intended. However, uncertainties regarding timing, roles and responsibilities prevent optimal use of the ICP. Agreements on timing and responsibilities are needed for further ICP implementation in daily pediatric palliative care practice. [ABSTRACT FROM AUTHOR]

Abstract The interface between pediatric palliative care (PPC) and inborn metabolic diseases (IMD) remains incipient, though these conditions fill the state of art of complex chronic diseases, eligible to this health approach. We analyzed the medical records of PPC clinic during the years 2001 to 2021 and the IMD outpatients. We established a parallel with the world scientific literature concerning the epidemiology of PPC and IMD. Among outpatients, 14% were diagnosed with IMD, which were referred to the PPC service earlier compared to Non‐IMD cases. The Group 3 (complex molecules) was the most frequent (64.7%), following by Group 1 representing by small molecules (21.6%), the latter having a lower median age at diagnosis when compared to the former (0.7 vs. 5.2 years, p = 0.001). The sphingolipidoses were the pathologies most frequent in our cohort, in line with what was observed in the literature. There were no differences between IMD groups in terms of diagnosis and PPC referral age, however in Non‐IMD conditions, the age of diagnosis were earlier than IMD. Nevertheless, IMD group showed lower age of referral to PPC. The IMD comprises large fraction of outpatients in the PPC setting, thus further studies are needed in this field.

Introduction: Brazil is a developing and an Upper Middle Income, categorized by the World Bank. Therefore, it is a country that needs a special vision for children with oncological diseases who require Pediatric Palliative Care. This study aimed to understand the specificities of services that provide oncology services in comparison to those that do not provide oncological care. Methods: This is a descriptive, cross-sectional, and online survey study. A questionnaire was created by a multidisciplinary group of leaders from the Brazilian Pediatric Palliative Care Network and then the survey was distributed using a snowball strategy. Results: Of the 90 services that answered the questionnaire, 40 (44.4%) attended oncologic patients. The Southeast represented most of the services (57.57%), followed by the Northeast, with 18.89% (17 services), the South with 12.22% (11 services), and the Center West with 8.89% (8 services). No differences were observed in access to opioid prescriptions between the services. It was observed that those services that attended oncologic patients had a tendency to dedicate more time to Pediatric Palliative Care. Discussion: The distribution of services that cover oncology and those that do not, are similar in the different regions of Brazil. In Brazil, there are difficulties in accessing opioids in pediatrics: access to opioid prescriptions without differences revealed that even pediatric oncologists might have difficulty with this prescription, and this should improve. It is concluded that education in Pediatric Palliative Care is the key to improvements in the area. [ABSTRACT FROM AUTHOR]

Pediatric palliative care (PPC) is defined as "the active care of the child's body, quality of life, mind and spirit, also giving support to the family". PPC should be established once a diagnosis of life-limiting or life-threatening disease is reached and should continue as long as necessary. Therefore, pediatric palliative care (PPC) can continue for years, also given the improved care approaches for children with life-limiting or life-threatening diseases. Over time, the child may grow to become a young adult, and when this happens, the transition to adult healthcare services must be undertaken. This article discusses possible interventions, fostering an efficient transition from pediatric to adult palliative care. A narrative review presents issues, experiences, and existing programs. A "Perspectives" section presents opinions and proposals by the authors. The transition process is not limited to a change from pediatric to adult services. Rather, it includes the entire process of the development of the child and requires interdisciplinary management with proper planning and collaboration among professionals of pediatric and adult teams. [ABSTRACT FROM AUTHOR]

Background: Children with medical complexity (CMC) often require multiple medications, leading to polypharmacy, which seems to be linked to adverse effects, administration errors, and increased caregiver burden. This study aimed to describe the prevalence of polypharmacy, medication burden, off-label drug use, and associated costs. Methods: Conducted at the Pediatric Palliative Care Center of Padua, Italy, from August to October 2021, this cross-sectional observational study included patients up to 23 years old with at least one prescribed drug. Data were collected from medical records and caregiver interviews. Drug costs were collected from the Italian Medicine Agency. Descriptive statistical analysis was performed. For comparisons among categorical variables, the Chi-square test was used, and for those among continuous variables, the ANOVA test was used. Results: This study analyzed treatment regimens of 169 patients with a median age of 12.5 years (0.3–23). Polypharmacy was present in 52.7% of patients, and medication burden was observed in 44.4%, both varying significantly by primary diagnosis (p < 0.001). The median daily cost per patient was EUR 2.2 (IQR 0.9–7.1), with significant variation among subgroups. Only 34.6% of prescriptions were off-label. Conclusions: polypharmacy and medication burden are frequent among our CMC population, with some differences according to primary diagnosis. [ABSTRACT FROM AUTHOR]