Special Issue "Pediatric Palliative Care"

A special issue of Children (ISSN 2227-9067).

Deadline for manuscript submissions: closed (30 November 2017)

Printed Edition Available!
A printed edition of this Special Issue is available here.

Special Issue Editor

Guest Editor
Dr. Stefan J. Friedrichsdorf

Department of Pain Medicine, Palliative Care & Integrative Medicine, Children's Hospitals and Clinics of Minnesota, Associate Professor of Pediatrics, University of Minnesota, 2525 Chicago Avenue South, Minneapolis, MN 55404, USA
Website | E-Mail
Interests: pain medicine; palliative care; integrative medicine

Special Issue Information

Dear Colleagues,

At least 20 million children worldwide would benefit from Pediatric Palliative Care (PPC) annually, and eight million children would need specialized PPC services. In the USA alone, more than 42,000 children, 0–19 years, die annually; fifty-five percent of them are infants younger than one year old. Interdisciplinary PPC is about matching treatment to patient goals and is considered specialized medical care for children with a serious illness. It is focused on relieving pain, distressing symptoms, and stress from a serious illness and is appropriate at any age and at any stage, together with curative treatment. The primary goal is to improve the quality of life both for the child and for his/her family.

Sadly, advances in the control of symptoms in children dying of life-limiting diseases have often not kept pace with treatment directed at curing the underlying disease. Data reveal that the majority of distressing symptoms in children with an advanced serious illness (such as pain, dyspnea and nausea/vomiting) are not treated, and, when treated, therapy is commonly ineffective. Emerging evidence shows that palliative care involvement results in improved quality of life, as well as prolongation of life.

High-quality pediatric palliative care for children with serious illnesses is now an expected standard of medicine. However, there still remain significant barriers to achieving optimal care, related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing.

Fortunately, considerable advances have been made in recent years providing PPC around the globe both in resource-poor and resource-rich countries through care provided at children’s hospitals, outpatient palliative care clinics, palliative home care, and free-standing children’s hospice houses. This Special Issue, “Pediatric Palliative Care”, is dedicated to describing existing gaps, as well as the achievements made in clinical care, education, training, and research. Both reviews and original research will be considered for publication.

I am looking forward to receiving your contributions.

Kind regards,

Dr. Stefan J. Friedrichsdorf
Guest Editor

Manuscript Submission Information

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Keywords

  • Pediatric Palliative Care
  • quality of life
  • symptom management
  • hospice

Published Papers (21 papers)

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Editorial

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Open AccessEditorial Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive
Children 2018, 5(9), 120; https://doi.org/10.3390/children5090120
Received: 23 August 2018 / Accepted: 28 August 2018 / Published: 31 August 2018
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Abstract
Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the United States alone, more than 42,000 children die every year, half [...] Read more.
Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the United States alone, more than 42,000 children die every year, half of them infants younger than one year. Advanced interdisciplinary pediatric palliative care for children with serious illnesses is now an expected standard of pediatric medicine. Unfortunately, in many institutions there remain significant barriers to achieving optimal care related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing and funding. Data reveals the majority of distressing symptoms in children with serious illness (such as pain, dyspnea and nausea/vomiting) were not addressed during their end-of-life period, and when treated, therapy was commonly ineffective. Whenever possible, treatment should focus on continued efforts to control the underlying illness. At the same time, children and their families should have access to interdisciplinary care aimed at promoting optimal physical, psychological and spiritual wellbeing. Persistent myths and misconceptions have led to inadequate symptom control in children with life-limiting diseases. Pediatric Palliative Care advocates the provision of comfort care, pain, and symptom management concurrently with disease-directed treatments. Families no longer have to opt for one over the other. They can pursue both, and include integrative care to maximize the child’s quality of life. Since most of the sickest children with serious illness are being taken care of in a hospital, every children’s hospital is now expected to offer an interdisciplinary palliative care service as the standard of care. This article addresses common myths and misconceptions which may pose clinical obstacles to effective PPC delivery and discusses the four typical stages of pediatric palliative care program implementation. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available

Research

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Open AccessArticle Supporting Parent Caregivers of Children with Life-Limiting Illness
Received: 6 June 2018 / Accepted: 20 June 2018 / Published: 26 June 2018
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Abstract
The well-being of parents is essential to the well-being of children with life-limiting illness. Parents are vulnerable to a range of negative financial, physical, and psychosocial issues due to caregiving tasks and other stressors related to the illness of their child. Pediatric palliative [...] Read more.
The well-being of parents is essential to the well-being of children with life-limiting illness. Parents are vulnerable to a range of negative financial, physical, and psychosocial issues due to caregiving tasks and other stressors related to the illness of their child. Pediatric palliative care practitioners provide good care to children by supporting their parents in decision-making and difficult conversations, by managing pain and other symptoms in the ill child, and by addressing parent and family needs for care coordination, respite, bereavement, and social and emotional support. No matter the design or setting of a pediatric palliative care team, practitioners can seek to provide for parent needs by referral or intervention by the care team. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
Open AccessArticle From the Child’s Word to Clinical Intervention: Novel, New, and Innovative Approaches to Symptoms in Pediatric Palliative Care
Received: 19 December 2017 / Revised: 12 March 2018 / Accepted: 21 March 2018 / Published: 28 March 2018
Cited by 1 | PDF Full-text (314 KB) | HTML Full-text | XML Full-text
Abstract
Despite vast improvements in disease-based treatments, many children live with life-threatening disorders that cause distressing symptoms. These symptoms can be difficult to comprehensively assess and manage. Yet, frequent and accurate symptom reporting and expert treatment is critical to preserving a patient’s physical, psychological, [...] Read more.
Despite vast improvements in disease-based treatments, many children live with life-threatening disorders that cause distressing symptoms. These symptoms can be difficult to comprehensively assess and manage. Yet, frequent and accurate symptom reporting and expert treatment is critical to preserving a patient’s physical, psychological, emotional, social, and existential heath. We describe emerging methods of symptom and health-related quality-of-life (HRQOL) assessment through patient-reported outcomes (PROs) tools now used in clinical practice and novel research studies. Computer-based and mobile apps can facilitate assessment of symptoms and HRQOL. These technologies can be used alone or combined with therapeutic strategies to improve symptoms and coping skills. We review technological advancements, including mobile apps and toys, that allow improved symptom reporting and management. Lastly, we explore the value of a pediatric palliative care interdisciplinary team and their role in assessing and managing distressing symptoms and minimizing suffering in both the child and family. These methods and tools highlight the way that novel, new, and innovative approaches to symptom assessment and management are changing the way that pediatrics and pediatric palliative care will be practiced in the future. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
Open AccessArticle A Sleep Questionnaire for Children with Severe Psychomotor Impairment (SNAKE)—Concordance with a Global Rating of Sleep Quality
Received: 29 November 2017 / Revised: 14 January 2018 / Accepted: 30 January 2018 / Published: 1 February 2018
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Abstract
Sleep problems are a common and serious issue in children with life-limiting conditions (LLCs) and severe psychomotor impairment (SPMI). The “Sleep Questionnaire for Children with Severe Psychomotor Impairment” (Schlaffragebogen für Kinder mit Neurologischen und Anderen Komplexen Erkrankungen, [...] Read more.
Sleep problems are a common and serious issue in children with life-limiting conditions (LLCs) and severe psychomotor impairment (SPMI). The “Sleep Questionnaire for Children with Severe Psychomotor Impairment” (Schlaffragebogen für Kinder mit Neurologischen und Anderen Komplexen Erkrankungen, SNAKE) was developed for this unique patient group. In a proxy rating, the SNAKE assesses five different dimensions of sleep(-associated) problems (disturbances going to sleep, disturbances remaining asleep, arousal and breathing disorders, daytime sleepiness, and daytime behavior disorders). It has been tested with respect to construct validity and some aspects of criterion validity. The present study examined whether the five SNAKE scales are consistent with parents’ or other caregivers’ global ratings of a child’s sleep quality. Data from a comprehensive dataset of children and adolescents with LLCs and SPMI were analyzed through correlation coefficients and Mann–Whitney U testing. The results confirmed the consistency of both sources of information. The highest levels of agreements with the global rating were achieved for disturbances in terms of going to sleep and disturbances with respect to remaining asleep. The results demonstrate that the scales and therefore the SNAKE itself is well-suited for gathering information on different sleep(-associated) problems in this vulnerable population. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
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Open AccessArticle A Review of Apps for Calming, Relaxation, and Mindfulness Interventions for Pediatric Palliative Care Patients
Received: 9 November 2017 / Revised: 28 December 2017 / Accepted: 18 January 2018 / Published: 26 January 2018
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Abstract
Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on app quality assessment or review of these [...] Read more.
Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on app quality assessment or review of these apps for level of engagement, functionality, aesthetics, or applicability for palliative pediatric patients. The pediatric palliative care study team searched smartphone application platforms for apps relevant to calming, relaxation, and mindfulness for pediatric and adolescent patients. Apps were reviewed using a systematic data extraction tool. Validated Mobile Application Rating Scale (MARS) scores were determined by two blinded reviewers. Apps were then characterized by infant, child, adolescent, and adult caregiver group categories. Reviewer discussion resulted in consensus. Sixteen of the 22 apps identified were included in the final analysis. The apps operated on either iOS or Android platforms. All were available in English with four available in Spanish. Apps featured a relaxation approach (12/16), soothing images (8/16), and breathing techniques (8/16). Mood and sleep patterns were the main symptoms targeted by apps. Provision of mobile apps resource summary has the potential to foster pediatric palliative care providers’ knowledge of app functionality and applicability as part of ongoing patient care. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
Open AccessArticle A Retrospective Review of Resuscitation Planning at a Children’s Hospital
Received: 30 November 2017 / Revised: 18 December 2017 / Accepted: 20 December 2017 / Published: 4 January 2018
Cited by 3 | PDF Full-text (1197 KB) | HTML Full-text | XML Full-text | Supplementary Files
Abstract
Resuscitation plans (RP) are an important clinical indicator relating to care at the end of life in paediatrics. A retrospective review of the medical records of children who had been referred to the Royal Children’s Hospital, Brisbane, Australia who died in the calendar [...] Read more.
Resuscitation plans (RP) are an important clinical indicator relating to care at the end of life in paediatrics. A retrospective review of the medical records of children who had been referred to the Royal Children’s Hospital, Brisbane, Australia who died in the calendar year 2011 was performed. Of 62 records available, 40 patients (65%) had a life limiting condition and 43 medical records (69%) contained a documented RP. This study demonstrated that both the underlying condition (life-limiting or life-threatening) and the setting of care (Pediatric Intensive Care Unit or home) influenced the development of resuscitation plans. Patients referred to the paediatric palliative care (PPC) service had a significantly longer time interval from documentation of a resuscitation plan to death and were more likely to die at home. All of the patients who died in the paediatric intensive care unit (PICU) had a RP that was documented within the last 48 h of life. Most RPs were not easy to locate. Documentation of discussions related to resuscitation planning should accommodate patient and family centered care based on individual needs. With varied diagnoses and settings of care, it is important that there is inter-professional collaboration, particularly involving PICU and PPC services, in developing protocols of how to manage this difficult but inevitable clinical scenario. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
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Review

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Open AccessFeature PaperReview Children’s Experience of Symptoms: Narratives through Words and Images
Received: 14 March 2018 / Revised: 14 March 2018 / Accepted: 29 March 2018 / Published: 19 April 2018
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Abstract
Children who live with a complex chronic or life-threatening illness face extraordinary challenges. Whether they are receiving disease-oriented treatment (aimed at potential cure or prolongation of life) or palliative treatment—or both concurrently—our challenge is to enhance their comfort and minimize their distress. Symptom [...] Read more.
Children who live with a complex chronic or life-threatening illness face extraordinary challenges. Whether they are receiving disease-oriented treatment (aimed at potential cure or prolongation of life) or palliative treatment—or both concurrently—our challenge is to enhance their comfort and minimize their distress. Symptom management is thus a critical component of pediatric palliative care. Symptoms may be either physical or psychological in nature (or a confluence of both) and their effective management has a direct impact on the child’s quality of life. This article provides an integrative overview of children’s experience of selected physical and psychological symptoms, as expressed through their words and images. Understanding their perspectives is an essential component in the design and provision of optimal symptom management. Included, as well, are examples from siblings—a reminder of the profound impact of illness on these children who also “live” the experience, albeit in a different way. The symptoms that are described are pain, nausea and vomiting, fatigue, weakness, seizures, hair loss, depression, and anxiety. Although psychological symptoms are often inextricable from the physical, they may also present independently as part of the overall illness experience. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
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Open AccessReview Communicating Effectively in Pediatric Cancer Care: Translating Evidence into Practice
Received: 19 December 2017 / Revised: 5 March 2018 / Accepted: 6 March 2018 / Published: 11 March 2018
Cited by 2 | PDF Full-text (608 KB) | HTML Full-text | XML Full-text
Abstract
Effective communication is essential to the practice of pediatric oncology. Clear and empathic delivery of diagnostic and prognostic information positively impacts the ways in which patients and families cope. Honest, compassionate discussions regarding goals of care and hopes for patients approaching end of [...] Read more.
Effective communication is essential to the practice of pediatric oncology. Clear and empathic delivery of diagnostic and prognostic information positively impacts the ways in which patients and families cope. Honest, compassionate discussions regarding goals of care and hopes for patients approaching end of life can provide healing when other therapies have failed. Effective communication and the positive relationships it fosters also can provide comfort to families grieving the loss of a child. A robust body of evidence demonstrates the benefits of optimal communication for patients, families, and healthcare providers. This review aims to identify key communication skills that healthcare providers can employ throughout the illness journey to provide information, encourage shared decision-making, promote therapeutic alliance, and empathically address end-of-life concerns. By reviewing the relevant evidence and providing practical tips for skill development, we strive to help healthcare providers understand the value of effective communication and master these critical skills. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
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Open AccessReview Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies
Received: 9 January 2018 / Revised: 13 February 2018 / Accepted: 16 February 2018 / Published: 26 February 2018
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Abstract
Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our [...] Read more.
Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
Open AccessReview Pediatric Palliative Care for Children with Progressive Non-Malignant Diseases
Received: 22 December 2017 / Revised: 4 February 2018 / Accepted: 12 February 2018 / Published: 20 February 2018
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Abstract
A substantial number of children cared for by pediatric palliative care physicians have progressive non-malignant conditions. Some elements of their care overlap with care for children with cancer while other elements, especially prognosis and trajectory, have nuanced differences. This article reviews the population, [...] Read more.
A substantial number of children cared for by pediatric palliative care physicians have progressive non-malignant conditions. Some elements of their care overlap with care for children with cancer while other elements, especially prognosis and trajectory, have nuanced differences. This article reviews the population, physical-emotional and social concerns, and trajectory. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
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Open AccessReview Paediatric Palliative Care in Resource-Poor Countries
Received: 30 November 2017 / Revised: 9 February 2018 / Accepted: 12 February 2018 / Published: 19 February 2018
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Abstract
There is a great need for paediatric palliative care (PPC) services globally, but access to services is lacking in many parts of the world, particularly in resource-poor settings. Globally it is estimated that 21.6 million children need access to palliative care, with 8.2 [...] Read more.
There is a great need for paediatric palliative care (PPC) services globally, but access to services is lacking in many parts of the world, particularly in resource-poor settings. Globally it is estimated that 21.6 million children need access to palliative care, with 8.2 needing specialist services. PC has been identified as important within the global health agenda e.g., within universal health coverage, and a recent Lancet commission report recognised the need for PPC. However, a variety of challenges have been identified to PPC development globally such as: access to treatment, access to medications such as oral morphine, opiophobia, a lack of trained health and social care professionals, a lack of PPC policies and a lack of awareness about PPC. These challenges can be overcome utilising a variety of strategies including advocacy and public awareness, education, access to medications, implementation and research. Examples will be discussed impacting on the provision of PPC in resource-poor settings. High-quality PPC service provision can be provided with resource-poor settings, and there is an urgent need to scale up affordable, accessible, and quality PPC services globally to ensure that all children needing palliative care can access it. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
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Open AccessReview Palliative Care for Children in Hospital: Essential Roles
Received: 30 November 2017 / Revised: 23 January 2018 / Accepted: 12 February 2018 / Published: 19 February 2018
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Abstract
Palliative care for children in pediatric hospitals is a vital part of the network of services supporting children with severe illness. This has been recognized, with a trend over the past decade for an increased number of pediatric palliative care (PPC) services established [...] Read more.
Palliative care for children in pediatric hospitals is a vital part of the network of services supporting children with severe illness. This has been recognized, with a trend over the past decade for an increased number of pediatric palliative care (PPC) services established in pediatric hospitals. The inpatient team is in the unique position of influencing the early identification of children and their families, across the age and diagnostic spectrum, which could benefit from palliative care. These services have an opportunity to influence the integration of the palliative approach throughout the hospital, and in so doing, have the capacity to improve many aspects of care, including altering an increasingly futile and burdensome treatment trajectory, and ensuring improved symptom (physical and psychological) management. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
Open AccessReview Pediatric Palliative Care in Infants and Neonates
Received: 7 December 2017 / Revised: 24 January 2018 / Accepted: 1 February 2018 / Published: 7 February 2018
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Abstract
The application of palliative and hospice care to newborns in the neonatal intensive care unit (NICU) has been evident for over 30 years. This article addresses the history, current considerations, and anticipated future needs for palliative and hospice care in the NICU, and [...] Read more.
The application of palliative and hospice care to newborns in the neonatal intensive care unit (NICU) has been evident for over 30 years. This article addresses the history, current considerations, and anticipated future needs for palliative and hospice care in the NICU, and is based on recent literature review. Neonatologists have long managed the entirety of many newborns’ short lives, given the relatively high mortality rates associated with prematurity and birth defects, but their ability or willingness to comprehensively address of the continuum of interdisciplinary palliative, end of life, and bereavement care has varied widely. While neonatology service capacity has grown worldwide during this time, so has attention to pediatric palliative care generally, and neonatal-perinatal palliative care specifically. Improvements have occurred in family-centered care, communication, pain assessment and management, and bereavement. There remains a need to integrate palliative care with intensive care rather than await its application solely at the terminal phase of a young infant’s life—when s/he is imminently dying. Future considerations for applying neonatal palliative care include its integration into fetal diagnostic management, the developing era of genomic medicine, and expanding research into palliative care models and practices in the NICU. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
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Open AccessReview ‘Total Pain’ in Children with Severe Neurological Impairment
Received: 28 November 2017 / Revised: 11 January 2018 / Accepted: 12 January 2018 / Published: 18 January 2018
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Abstract
Many children with palliative care needs experience difficulty in managing pain. Perhaps none more so than those with severe neurological impairment. For many years; behaviours in these children were misunderstood. As a result; pain was poorly recognised and inadequately managed. Significant advances have [...] Read more.
Many children with palliative care needs experience difficulty in managing pain. Perhaps none more so than those with severe neurological impairment. For many years; behaviours in these children were misunderstood. As a result; pain was poorly recognised and inadequately managed. Significant advances have been made in the assessment and management of pain in this challenging group of patients. We summarise these advances; drawing on our own experience working with infants; children and young adults with palliative care needs within a UK tertiary paediatric palliative care service. We expand on the recent understanding of ‘Total Pain’; applying a holistic approach to pain assessment and management in children with severe neurological impairment. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
Open AccessReview Enhancing Pediatric Palliative Care for Latino Children and Their Families: A Review of the Literature and Recommendations for Research and Practice in the United States
Received: 17 November 2017 / Revised: 15 December 2017 / Accepted: 20 December 2017 / Published: 22 December 2017
Cited by 2 | PDF Full-text (530 KB) | HTML Full-text | XML Full-text
Abstract
As the demand for pediatric palliative care (PC) increases, data suggest that Latino children are less likely to receive services than non-Latino children. Evidence on how to best provide PC to Latino children is sparse. We conducted a narrative review of literature related [...] Read more.
As the demand for pediatric palliative care (PC) increases, data suggest that Latino children are less likely to receive services than non-Latino children. Evidence on how to best provide PC to Latino children is sparse. We conducted a narrative review of literature related to PC for Latino children and their families in the United States. In the United States, Latinos face multiple barriers that affect their receipt of PC, including poverty, lack of access to health insurance, language barriers, discrimination, and cultural differences. Pediatric PC research and clinical initiatives that target the needs of Latino families are sparse, underfunded, but essential. Education of providers on Latino cultural values is necessary. Additionally, advocacy efforts with a focus on equitable care and policy reform are essential to improving the health of this vulnerable population. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
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Open AccessReview Feeding Intolerance in Children with Severe Impairment of the Central Nervous System: Strategies for Treatment and Prevention
Received: 1 December 2017 / Revised: 21 December 2017 / Accepted: 21 December 2017 / Published: 22 December 2017
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Abstract
Children with severe impairment of the central nervous system (CNS) experience gastrointestinal (GI) symptoms at a high rate and severity, including retching, vomiting, GI tract pain, and feeding intolerance. Commonly recognized sources of symptoms include constipation and gastroesophageal reflux disease. There is growing [...] Read more.
Children with severe impairment of the central nervous system (CNS) experience gastrointestinal (GI) symptoms at a high rate and severity, including retching, vomiting, GI tract pain, and feeding intolerance. Commonly recognized sources of symptoms include constipation and gastroesophageal reflux disease. There is growing awareness of sources due to the impaired nervous system, including visceral hyperalgesia due to sensitization of sensory neurons in the enteric nervous system and central neuropathic pain due to alterations in the thalamus. Challenging the management of these symptoms is the lack of tests to confirm alterations in the nervous system as a cause of symptom generation, requiring empirical trials directed at such sources. It is also common to have multiple reasons for the observed symptoms, further challenging management. Recurrent emesis and GI tract pain can often be improved, though in some not completely eliminated. In some, this can progress to intractable feeding intolerance. This comprehensive review provides an evidence-based approach to care, a framework for recurrent symptoms, and language strategies when symptoms remain intractable to available interventions. This summary is intended to balance optimal management with a sensitive palliative care approach to persistent GI symptoms in children with severe impairment of the CNS. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
Open AccessReview Risk and Resilience Factors Related to Parental Bereavement Following the Death of a Child with a Life-Limiting Condition
Children 2017, 4(11), 96; https://doi.org/10.3390/children4110096
Received: 7 August 2017 / Revised: 17 October 2017 / Accepted: 31 October 2017 / Published: 9 November 2017
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Abstract
This paper reviews the theoretical and empirical literature on risk and resilience factors impacting on parental bereavement outcomes following the death of a child with a life-limiting condition. Over the past few decades, bereavement research has focussed primarily on a risk-based approach. In [...] Read more.
This paper reviews the theoretical and empirical literature on risk and resilience factors impacting on parental bereavement outcomes following the death of a child with a life-limiting condition. Over the past few decades, bereavement research has focussed primarily on a risk-based approach. In light of advances in the literature on resilience, the authors propose a Risk and Resilience Model of Parental Bereavement, thus endeavouring to give more holistic consideration to a range of potential influences on parental bereavement outcomes. The literature will be reviewed with regard to the role of: (i) loss-oriented stressors (e.g., circumstances surrounding the death and multiple losses); (ii) inter-personal factors (e.g., marital factors, social support, and religious practices); (iii) intra-personal factors (e.g., neuroticism, trait optimism, psychological flexibility, attachment style, and gender); and (iv) coping and appraisal, on parental bereavement outcomes. Challenges facing this area of research are discussed, and research and clinical implications considered. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
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Other

Open AccessPerspective Integrative Approaches in Pediatric Palliative Care
Received: 16 April 2018 / Revised: 22 May 2018 / Accepted: 5 June 2018 / Published: 13 June 2018
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Abstract
Pediatric palliative care is a field which focuses on caring for and treating the symptoms and distress typically associated with life-limiting illness. Integrative medicine is supported by evidence and aims to heal the whole person, including all aspects of one’s lifestyle. Therapies offered [...] Read more.
Pediatric palliative care is a field which focuses on caring for and treating the symptoms and distress typically associated with life-limiting illness. Integrative medicine is supported by evidence and aims to heal the whole person, including all aspects of one’s lifestyle. Therapies offered by integrative medicine often empower patients and families, allowing for a sense of control. This review addresses the merging of integrative medicine philosophy and modalities with the care given to children with life-limiting illness. We review an introduction to integrative medicine, trends in its incorporation in the healthcare setting, application to patients receiving palliative care and the management of specific symptoms. A case study is offered to illustrate these principles. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
Open AccessCase Report From Inpatient to Clinic to Home to Hospice and Back: Using the “Pop Up” Pediatric Palliative Model of Care
Received: 6 March 2018 / Revised: 17 April 2018 / Accepted: 23 April 2018 / Published: 26 April 2018
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Abstract
Children and young people with life-limiting illnesses who need palliative care often have complex diverse medical conditions that may involve multiple hospital presentations, medical admissions, care, or transfer to other medical care facilities. In order to provide patients with holistic care in any [...] Read more.
Children and young people with life-limiting illnesses who need palliative care often have complex diverse medical conditions that may involve multiple hospital presentations, medical admissions, care, or transfer to other medical care facilities. In order to provide patients with holistic care in any location, palliative care clinicians need to carefully consider the ways to maintain continuity of care which enhances the child’s quality of life. An emerging model of care known as “Pop Up” describes the approaches to supporting children and young people in any facility. A Pop Up is a specific intervention over and above the care that is provided to a child, young person and their family aimed at improving the confidence of local care providers to deliver ongoing care. This paper looks at some of the factors related to care transfer for pediatric palliative patients from one care facility to another, home and the impact of this on the family and medical care. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
Open AccessCase Report Interdisciplinary Pediatric Palliative Care Team Involvement in Compassionate Extubation at Home: From Shared Decision-Making to Bereavement
Received: 19 January 2018 / Revised: 2 March 2018 / Accepted: 5 March 2018 / Published: 7 March 2018
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Abstract
Little is known about the role of pediatric palliative care (PPC) programs in providing support for home compassionate extubation (HCE) when families choose to spend their child’s end of life at home. Two cases are presented that highlight the ways in which the [...] Read more.
Little is known about the role of pediatric palliative care (PPC) programs in providing support for home compassionate extubation (HCE) when families choose to spend their child’s end of life at home. Two cases are presented that highlight the ways in which the involvement of PPC teams can help to make the option available, help ensure continuity of family-centered care between hospital and home, and promote the availability of psychosocial support for the child and their entire family, health care team members, and community. Though several challenges to realizing the option of HCE exist, early consultation with a PPC team in the hospital, the development of strategic community partnerships, early referral to home based care resources, and timely discussion of family preferences may help to make this option a realistic one for more families. The cases presented here demonstrate how families’ wishes with respect to how and where their child dies can be offered, even in the face of challenges. By joining together when sustaining life support may not be in the child’s best interest, PPC teams can pull together hospital and community resources to empower families to make decisions about when and where their child dies. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
Open AccessBrief Report Trending Longitudinal Agreement between Parent and Child Perceptions of Quality of Life for Pediatric Palliative Care Patients
Received: 27 April 2017 / Revised: 1 July 2017 / Accepted: 28 July 2017 / Published: 1 August 2017
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Abstract
Pediatric palliative care studies often rely on proxy-reported instead of direct child-reported quality of life metrics. The purpose of this study was to longitudinally evaluate quality of life for pediatric patients receiving palliative care consultations and to compare patient-reported quality of life with [...] Read more.
Pediatric palliative care studies often rely on proxy-reported instead of direct child-reported quality of life metrics. The purpose of this study was to longitudinally evaluate quality of life for pediatric patients receiving palliative care consultations and to compare patient-reported quality of life with parent perception of the child’s quality of life across wellness domains. The 23-item PedsQL™ V4.0 Measurement Model was utilized for ten child and parent dyads at time of initial palliative care consultation, Month 6, and Month 12 to assess for physical, emotional, social, and cognitive dimensions of quality of life as reported independently by the child and by the parent for the child. Findings were analyzed using Bland–Altman plots to compare observed differences to limits of agreement. This study revealed overall consistency between parent- and child-reported quality of life across domains. Physical health was noted to be in closest agreement. At the time of initial palliative care consult, children collectively scored their social quality of life higher than parental perception of the child’s social quality of life; whereas, emotional and cognitive quality of life domains were scored lower by children than by the parental report. At the one year survey time point, the physical, emotional, and social domains trended toward more positive patient perception than proxy perception with congruence between quality of life scores for the cognitive domain. Findings reveal the importance of eliciting a child report in addition to a parent report when measuring and longitudinally trending perceptions on quality of life. Full article
(This article belongs to the Special Issue Pediatric Palliative Care) Printed Edition available
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Children EISSN 2227-9067 Published by MDPI AG, Basel, Switzerland RSS E-Mail Table of Contents Alert
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