Pediatric Palliative Care Update

A topical collection in Children (ISSN 2227-9067). This collection belongs to the section "Global and Public Health".

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Editor


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Guest Editor
Department of Pediatric Medicine, Texas Children's Hospital, Houston, TX 77030, USA
Interests: the evaluation and management of difficult-to-manage and refractory symptoms; bioethics; medical education; global health
Special Issues, Collections and Topics in MDPI journals

Topical Collection Information

Dear Colleagues,

It is a great honor to invite you to collaborate on this second Special Issue on Pediatric Palliative Medicine. We are hoping to leverage the experience of seasoned clinicians and the emerging young talent throughout the world to build on the brilliant contributions found in the first Issue, compiled by Dr. Stefan Friederichsdorf and published in 2018.

We are hoping to create a broad-based, international, interdisciplinary collection of essays on the most pressing problems in Pediatric Palliative Medicine—as noted by Dr. Friederichsdorf, only a fraction of the 21 million children with life-limiting or life-threatening disorders requiring palliative care receive adequate symptom relief and other important interventions by trained healthcare professionals, and that was before this unprecedented time in the history of humanity, when natural disasters and civil unrest in many low-income and middle-income countries have caused the forced displacement of millions of families throughout the globe, with the attendant significant disruptions in basic healthcare provision. 

To make matters worse, the novel coronavirus COVID-19 pandemic has caused a “concussive wave” in palliative medicine, forcing rapid decisions, in many cases with reallocation of resources, causing abrupt dissolution and dispersion of established palliative care teams and complicating the organization of new services, despite significant need—particularly in low and mid-income settings. The full public health impact of this phenomenon will not be understood for a very long time, but the challenges we are facing will without doubt promote collaboration and creativity as we strive to make holistic, optimal symptom control an important part of universal health coverage and other global initiatives for every child, in every setting.

Our vision is to update palliative aspects of neonatal and pediatric specialty care; recognize factors contributing to physical, psychosocial, and spiritual suffering in babies, school-aged children, adolescents and young adults transitioning to adult-based health care; and to explore ways to foster resilience in our patients and in their families, in our teams, in our healthcare systems, and in ourselves. Pediatric palliative care is difficult, beautiful, important work…we need your expertise.

Dr. Regina Okhuysen-Cawley
Guest Editor

Manuscript Submission Information

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Keywords

  • pain
  • life-limiting
  • symptom management
  • ethics
  • resiliency
  • bereavement

Published Papers (24 papers)

2022

Jump to: 2021, 2020

14 pages, 287 KiB  
Review
Psychological and Psychiatric Comorbidities in Youth with Serious Physical Illness
by Sohail Nibras, Rachel Kentor, Yasir Masood, Karin Price, Nicole M. Schneider, Rachel B. Tenenbaum and Chadi Calarge
Children 2022, 9(7), 1051; https://0-doi-org.brum.beds.ac.uk/10.3390/children9071051 - 14 Jul 2022
Cited by 8 | Viewed by 2340
Abstract
An estimated one in six children in the United States suffers from a mental disorder, including mood, anxiety, or behavioral disorders. This rate is even higher in children with chronic medical illness. This manuscript provides a concise review of the symptoms that comprise [...] Read more.
An estimated one in six children in the United States suffers from a mental disorder, including mood, anxiety, or behavioral disorders. This rate is even higher in children with chronic medical illness. This manuscript provides a concise review of the symptoms that comprise mental conditions often observed in children with chronic illness or at the end of life. It further provides some guidance to help clinicians distinguish normative from pathological presentations. Evidence-based psychotherapy interventions, potentially applicable to the acute inpatient setting, are briefly summarized. Broad recommendations are made regarding both psychotherapeutic as well as pharmacotherapeutic interventions, with a review of common or serious medication side effects. Finally, delirium recognition and management are summarized. Full article
8 pages, 394 KiB  
Review
The COVID-19 Pandemic: Early Ripple Effects in Pediatric Palliative Care
by Linda Marisol Bustamante, Regina Okhuysen-Cawley, Julia Downing, Stephen R. Connor, Mary Ann Muckaden, Marianne Phillips, Andrea Icaza, Nicole Garzon, Yuriko Nakashima, Kelsi Morgan, David Mauser and Michelle Grunauer
Children 2022, 9(5), 642; https://doi.org/10.3390/children9050642 - 29 Apr 2022
Viewed by 2078
Abstract
Palliative care, which aims to provide comprehensive, interdisciplinary, holistic care to children, adolescents and adults with life-threatening, and ultimately life-limiting conditions, is a discipline that has emerged as an integral component of healthcare systems throughout the world. Although the value of life-affirming palliative [...] Read more.
Palliative care, which aims to provide comprehensive, interdisciplinary, holistic care to children, adolescents and adults with life-threatening, and ultimately life-limiting conditions, is a discipline that has emerged as an integral component of healthcare systems throughout the world. Although the value of life-affirming palliative care (PC) has been shown across many domains, funding and acceptance of palliative care teams have been variable: some hospital systems have free-standing, dedicated interdisciplinary teams while, in many instances, palliative care services are provided “pro bono” by individuals with a special interest in the discipline, who provide PC in addition to other responsibilities. In this article, we hope to highlight some of the observations on the early effects of the COVID–19 pandemic on the provision of PC in children. Full article
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2021

Jump to: 2022, 2020

13 pages, 30719 KiB  
Review
Pediatric Oncology Palliative Care Programs in Central America: Pathways to Success
by Wendy Cristhyna Gómez García, Silvia Rivas, Gabriela Paz, Marisol Bustamante, Gerardo Castro, Hazel Gutiérrez, Maria Sabina Ah Chu, Pascale Yola Gassant, Rolando Larin Lovo, Yessika Gamboa, Marleni Torres Núñez, Ximena García Quintero and Regina Okhuysen-Cawley
Children 2021, 8(11), 1031; https://0-doi-org.brum.beds.ac.uk/10.3390/children8111031 - 10 Nov 2021
Cited by 2 | Viewed by 2908
Abstract
Palliative care offers children who have life-limiting and life-threatening oncologic illnesses and their families improved quality of life. In some instances, impeccable symptom control can lead to improved survival. Cultural and financial barriers to palliative care in oncology patients occur in all countries, [...] Read more.
Palliative care offers children who have life-limiting and life-threatening oncologic illnesses and their families improved quality of life. In some instances, impeccable symptom control can lead to improved survival. Cultural and financial barriers to palliative care in oncology patients occur in all countries, and those located in Central America are no exception. In this article, we summarize how the programs participating in the Asociación de Hemato-Oncólogos Pediatras de Centro America (AHOPCA) have developed dedicated oncology palliative care programs. The experience in Guatemala, El Salvador, Costa Rica, Panama, Dominican Republic and Haiti is detailed, with a focus on history, the barriers that have impeded progress, and achievements. Future directions, which, of course, may be impacted by the COVID-19 pandemic, are described as well. Full article
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6 pages, 179 KiB  
Viewpoint
A Week in the Life: Pediatric Palliative Care through the Eyes of a Medical Student
by Eileen Williams, Jill Ann Jarrell and Jared Rubenstein
Children 2021, 8(11), 971; https://0-doi-org.brum.beds.ac.uk/10.3390/children8110971 - 27 Oct 2021
Cited by 2 | Viewed by 3004
Abstract
To complete the curriculum, learners rotating through a pediatric palliative care service are asked to submit a piece of reflective writing. Here, we share an edited version of the narrative one student submitted, accompanied by a brief consideration of the numerous benefits of [...] Read more.
To complete the curriculum, learners rotating through a pediatric palliative care service are asked to submit a piece of reflective writing. Here, we share an edited version of the narrative one student submitted, accompanied by a brief consideration of the numerous benefits of reflective writing for medical trainees (including improved communication and professionalism skills, as well as increased levels of empathy and comfort when facing complex or difficult situations). Additionally, we describe how brief personal narratives may serve to reduce common misconceptions and confusion by educating patients, families, and clinicians about the reality and the role of pediatric palliative care. Full article
12 pages, 785 KiB  
Article
Validation of the FACETS-OF-PPC as an Outcome Measure for Children with Severe Neurological Impairment and Their Families—A Multicenter Prospective Longitudinal Study
by Sophie Pelke, Julia Wager, Benedikt B. Claus, Kathrin Stening, Boris Zernikow and Mandira Reuther
Children 2021, 8(10), 905; https://0-doi-org.brum.beds.ac.uk/10.3390/children8100905 - 11 Oct 2021
Cited by 4 | Viewed by 1517
Abstract
Outcome measurement in pediatric palliative care (PPC) is receiving increasing attention. The FACETS-OF-PPC, a multidimensional outcome measure for children with severe neurological impairment, has been developed and partly validated. This study aimed to conclude the validity of the German version of the FACETS-OF-PPC. [...] Read more.
Outcome measurement in pediatric palliative care (PPC) is receiving increasing attention. The FACETS-OF-PPC, a multidimensional outcome measure for children with severe neurological impairment, has been developed and partly validated. This study aimed to conclude the validity of the German version of the FACETS-OF-PPC. A multicenter prospective study with two points of measurement has been conducted, employing confirmatory factor analyses, reliability analyses, and analyses to evaluate the tool’s sensitivity to change. Overall, 25 inpatient and outpatient teams throughout Germany recruited N = 227 parents of affected children and N = 238 professional caregivers. Participants filled out the FACETS-OF-PPC on the admission of a child to a palliative care service and at discharge from inpatient settings or two months after admission to outpatient services. The analyses revealed the questionnaire needing further adaption. Now, 17 of the original 34 items contribute to the construction of the questionnaire scales. The other items remain part of the questionnaire and may be evaluated descriptively. Furthermore, the FACETS-OF-PPC has moderate to appropriate internal consistency and is sensitive to change. Creating an outcome measure with good psychometric properties for the vulnerable population of children with severe neurological impairment appears extremely difficult. Considering these challenges, the FACETS-OF-PPC demonstrates adequate psychometric properties. Full article
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8 pages, 457 KiB  
Perspective
Pediatric Palliative Care Pharmacy Pearls—A Focus on Pain and Sedation
by Jennifer Placencia and Kevin Madden
Children 2021, 8(10), 902; https://0-doi-org.brum.beds.ac.uk/10.3390/children8100902 - 10 Oct 2021
Viewed by 2276
Abstract
Determining the optimal dosing regimen for pediatric patients is a challenge due to the lack of dosing guidelines and studies. In addition, many developmental pharmacology changes that occur throughout childhood that have profound impacts on the absorption, distribution, metabolism, and elimination of medications [...] Read more.
Determining the optimal dosing regimen for pediatric patients is a challenge due to the lack of dosing guidelines and studies. In addition, many developmental pharmacology changes that occur throughout childhood that have profound impacts on the absorption, distribution, metabolism, and elimination of medications are commonly used in palliative care. Adding to that complexity, certain medications have different effects in the pediatric patient compared to the adult patient. Being aware of the pharmacokinetic changes, impact on neurodevelopment and unique medication factors that are present in pediatric patients helps clinicians treat the pediatric palliative care patient in the best and safest way possible. Full article
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18 pages, 1530 KiB  
Article
Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study
by Theresa Sophie Busse, Chantal Jux, Sven Kernebeck, Larissa Alice Dreier, Dorothee Meyer, Daniel Zenz, Boris Zernikow and Jan Peter Ehlers
Children 2021, 8(10), 839; https://0-doi-org.brum.beds.ac.uk/10.3390/children8100839 - 24 Sep 2021
Cited by 6 | Viewed by 2244
Abstract
Background: Pediatric palliative care (PPC) patients experience years of multisectoral and professional care. An electronic cross-facility health record (ECHR) system can support the immediate exchange of information among PPC professionals. Based on a needs assessment, a prototype ECHR system was developed. Methods: To [...] Read more.
Background: Pediatric palliative care (PPC) patients experience years of multisectoral and professional care. An electronic cross-facility health record (ECHR) system can support the immediate exchange of information among PPC professionals. Based on a needs assessment, a prototype ECHR system was developed. Methods: To evaluate potential users’ perspective regarding the system, a qualitative observational study was conducted consisting of a concurrent think-aloud session and a semi-structured qualitative interview. Results: Twenty PPC professionals (nurses, physicians) from specialized outpatient PPC teams, a PPC unit, and medical offices rated the ECHR system as a helpful tool to improve the exchange and collection of information, communication between PPC professionals, and treatment planning. From the user’s point of view, the basic logic of the ECHR system should be further adapted to improve the interaction of data remirrored from patient records of outpatient and inpatient care with those entered via the system. The users wished for further functions (text search) and content (information on therapies). Some content, such as the treatment process, needs to be further adapted. Conclusion: The developed ECHR system needs to be more specific in some features by offering all available information; while for other features, be less specific to offer a quick overview. The ability to share information promptly and automatically was seen as a tremendous improvement to the quality of care for PPC patients. Full article
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18 pages, 284 KiB  
Review
Palliative Care in Pediatric Pulmonology
by Taylor Baumann, Shailendra Das, Jill Ann Jarrell, Yuriko Nakashima-Paniagua, Edith Adriana Benitez, Maria Carolina Gazzaneo and Natalie Villafranco
Children 2021, 8(9), 802; https://0-doi-org.brum.beds.ac.uk/10.3390/children8090802 - 13 Sep 2021
Cited by 2 | Viewed by 2492
Abstract
Children with End Stage Lung Disease (ESLD) are part of the growing population of individuals with life-limiting conditions of childhood. These patients present with a diverse set of pulmonary, cardiovascular, neuromuscular, and developmental conditions. This paper first examines five cases of children with [...] Read more.
Children with End Stage Lung Disease (ESLD) are part of the growing population of individuals with life-limiting conditions of childhood. These patients present with a diverse set of pulmonary, cardiovascular, neuromuscular, and developmental conditions. This paper first examines five cases of children with cystic fibrosis, bronchopulmonary dysplasia, neuromuscular disease, pulmonary hypertension, and lung transplantation from Texas Children’s Hospital. We discuss the expected clinical course of each condition, then review the integration of primary and specialized palliative care into the management of each diagnosis. This paper then reviews the management of two children with end staged lung disease at Hospital Civil de Guadalajara, providing an additional perspective for approaching palliative care in low-income countries. Full article
12 pages, 3844 KiB  
Article
Assessment of Sleep-Related Problems in Children with Cerebral Palsy Using the SNAKE Sleep Questionnaire
by Larissa Alice Dreier, Tugba Kapanci, Katharina Lonnemann, Margarete Koch-Hogrebe, Lucia Wiethoff-Ubrig, Markus Rauchenzauner, Markus Blankenburg, Boris Zernikow, Julia Wager and Kevin Rostasy
Children 2021, 8(9), 772; https://0-doi-org.brum.beds.ac.uk/10.3390/children8090772 - 1 Sep 2021
Cited by 4 | Viewed by 2243
Abstract
Cerebral palsy (CP) represents the most common motor impairment in childhood. The presence of sleep problems has not yet been investigated with an instrument specifically designed for this population. In this hospital-based, prospective study, N = 100 children (M = 7.9, range: 2–18 [...] Read more.
Cerebral palsy (CP) represents the most common motor impairment in childhood. The presence of sleep problems has not yet been investigated with an instrument specifically designed for this population. In this hospital-based, prospective study, N = 100 children (M = 7.9, range: 2–18 years) with CP were included. All patients underwent pediatric neurologists’ screening incorporating instruments (Data Collection Form; Gross Motor Functions Classification System, GMFCS; Bimanual Fine Motor Function, BFMF) recommended by the “Surveillance of Cerebral Palsy in Europe (SCPE)”. Parents completed the “Sleep Questionnaire for Children with Severe Psychomotor Impairment (SNAKE)”. Children’s sleep behavior was increasingly conspicuous, with greater gross motor (SNAKE scales: disturbances remaining asleep, daytime sleepiness) and fine motor (additionally SNAKE scale arousal and breathing problems) functional impairment. Overall, a proportion of children showed sleep behavior outside the SNAKE’s normal range. No relevant sleep differences were identified between different CP subtypes and comorbidities. Applying a population-specific questionnaire, children’s functional impairment seems to be more relevant to their sleep behavior than the CP subtype or CP comorbidities. Full article
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17 pages, 1216 KiB  
Article
Needs Assessment for the Development of an Electronic Cross-Facility Health Record (ECHR) for Pediatric Palliative Care: A Design Thinking Approach
by Theresa Sophie Busse, Chantal Jux, Sven Kernebeck, Larissa Alice Dreier, Dorothee Meyer, Daniel Zenz, Boris Zernikow and Jan Peter Ehlers
Children 2021, 8(7), 602; https://0-doi-org.brum.beds.ac.uk/10.3390/children8070602 - 16 Jul 2021
Cited by 4 | Viewed by 2478
Abstract
Background: Pediatric palliative care (PPC) is characterized by years of multisectoral and multi-professional care. Sharing information between PPC professionals is, therefore, essential for quality care. The evidence shows that electronic cross-facility health records (ECHRs) provide useful support in this context. To our knowledge, [...] Read more.
Background: Pediatric palliative care (PPC) is characterized by years of multisectoral and multi-professional care. Sharing information between PPC professionals is, therefore, essential for quality care. The evidence shows that electronic cross-facility health records (ECHRs) provide useful support in this context. To our knowledge, no ECHRs have been developed through a user-centered approach for this specific setting in Germany. Methods: Guided by design thinking, first, qualitative interviews were conducted to assess the needs of PPC professionals. Second, the elicited needs were specified in focus groups (FGs). Based on the needs stated in the interviews, prototypes of the ECHR were developed and discussed in the FGs. The indicated needs were supplemented and specified in an iterative process. The prototypes were further adapted according to these results. The unified theory of acceptance and use of technology was the basic model in the evaluation of needs. Results: Across seven main categories, past and current medication, emergency view, and messaging functions were identified as the participants’ desired core components of an ECHR. Utilizing design thinking facilitated the explicit articulation of user needs. Conclusions: Developing an ECHR with the content identified would allow for real-time data during emergencies, tracking what other PPC professionals have done, and making the applied treatments visible to others. This would offer a broader picture of the complex conditions common to PPC. Full article
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10 pages, 358 KiB  
Review
Redefining the Relationship: Palliative Care in Critical Perinatal and Neonatal Cardiac Patients
by Natasha S. Afonso, Margaret R. Ninemire, Sharada H. Gowda, Jaime L. Jump, Regina L. Lantin-Hermoso, Karen E. Johnson, Kriti Puri, Kyle D. Hope, Erin Kritz, Barbara-Jo Achuff, Lindsey Gurganious and Priya N. Bhat
Children 2021, 8(7), 548; https://0-doi-org.brum.beds.ac.uk/10.3390/children8070548 - 25 Jun 2021
Cited by 4 | Viewed by 3080
Abstract
Patients with perinatal and neonatal congenital heart disease (CHD) represent a unique population with higher morbidity and mortality compared to other neonatal patient groups. Despite an overall improvement in long-term survival, they often require chronic care of complex medical illnesses after hospital discharge, [...] Read more.
Patients with perinatal and neonatal congenital heart disease (CHD) represent a unique population with higher morbidity and mortality compared to other neonatal patient groups. Despite an overall improvement in long-term survival, they often require chronic care of complex medical illnesses after hospital discharge, placing a high burden of responsibility on their families. Emerging literature reflects high levels of depression and anxiety which plague parents, starting as early as the time of prenatal diagnosis. In the current era of the global COVID-19 pandemic, the additive nature of significant stressors for both medical providers and families can have catastrophic consequences on communication and coping. Due to the high prognostic uncertainty of CHD, data suggests that early pediatric palliative care (PC) consultation may improve shared decision-making, communication, and coping, while minimizing unnecessary medical interventions. However, barriers to pediatric PC persist largely due to the perception that PC consultation is indicative of “giving up.” This review serves to highlight the evolving landscape of perinatal and neonatal CHD and the need for earlier and longitudinal integration of pediatric PC in order to provide high-quality, interdisciplinary care to patients and families. Full article
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10 pages, 558 KiB  
Article
Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development
by Holly L. Spraker-Perlman, Taylor Aglio, Erica C. Kaye, Deena Levine, Brittany Barnett, Kathryn Berry Carter, Michael McNeil, Lisa Clark, Justin N. Baker and the St. Jude Quality of Life Steering Council
Children 2021, 8(6), 472; https://0-doi-org.brum.beds.ac.uk/10.3390/children8060472 - 3 Jun 2021
Cited by 5 | Viewed by 2953
Abstract
As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve [...] Read more.
As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care. Full article
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9 pages, 459 KiB  
Review
Pediatric Palliative Care in the Heart Failure, Ventricular Assist Device and Transplant Populations: Supporting Patients, Families and Their Clinical Teams
by Kyle D. Hope, Priya N. Bhat, William J. Dreyer, Barbara A. Elias, Jaime L. Jump, Gina Santucci, Natasha S. Afonso, Margaret R. Ninemire, Barbara-Jo Achuff, Erin M. Kritz, Sharada H. Gowda and Kriti Puri
Children 2021, 8(6), 468; https://0-doi-org.brum.beds.ac.uk/10.3390/children8060468 - 2 Jun 2021
Cited by 9 | Viewed by 3500
Abstract
Heart failure is a life-changing diagnosis for a child and their family. Pediatric patients with heart failure experience significant morbidity and frequent hospitalizations, and many require advanced therapies such as mechanical circulatory support and/or heart transplantation. Pediatric palliative care is an integral resource [...] Read more.
Heart failure is a life-changing diagnosis for a child and their family. Pediatric patients with heart failure experience significant morbidity and frequent hospitalizations, and many require advanced therapies such as mechanical circulatory support and/or heart transplantation. Pediatric palliative care is an integral resource for the care of patients with heart failure along its continuum. This includes support during the grief of a new diagnosis in a child critically ill with decompensated heart failure, discussion of goals of care and the complexities of mechanical circulatory support, the pensive wait for heart transplantation, and symptom management and psychosocial support throughout the journey. In this article, we discuss the scope of pediatric palliative care in the realm of pediatric heart failure, ventricular assist device (VAD) support, and heart transplantation. We review the limited, albeit growing, literature in this field, with an added focus on difficult conversation and decision support surrounding re-transplantation, HF in young adults with congenital heart disease, the possibility of destination therapy VAD, and the grimmest decision of VAD de-activation. Full article
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17 pages, 283 KiB  
Article
Audit of Psychosocial and Palliative Care Support for Children Having Allogeneic Stem Cell Transplants at the New Zealand National Allogeneic Transplant Centre
by Amanda M. Evans, Hiran Thabrew, Bruce Arroll, Nyree Cole and Ross Drake
Children 2021, 8(5), 356; https://0-doi-org.brum.beds.ac.uk/10.3390/children8050356 - 29 Apr 2021
Cited by 1 | Viewed by 2854
Abstract
Psychosocial and palliative care support during stem cell transplants (SCT) is known to improve outcomes. Aim: evaluate the support provided to children and families at the New Zealand National Allogeneic Stem Cell Transplant unit (NATC). Method: the psychosocial and palliative care support for [...] Read more.
Psychosocial and palliative care support during stem cell transplants (SCT) is known to improve outcomes. Aim: evaluate the support provided to children and families at the New Zealand National Allogeneic Stem Cell Transplant unit (NATC). Method: the psychosocial and palliative care support for children who received SCT between December 2012 and April 2018 was audited. Results: of the 101 children who received SCT, 97% were reviewed by the social work team (SW) and 82% by the psychiatric consult liaison team (CLT) at least once during their illness. However, pre-transplant psychological assessment only occurred in 16%, and during the SCT admission, only 55% received SW support, and 67% received CLT support. Eight out of eighty-five families (9%) were offered support for siblings. Eight of the sixteen children who died were referred for pediatric palliative care (PPC) with all supported and half the families who experienced a death (n = 8; 50%) received bereavement follow up. Conclusion: although the majority received some social work and psychological support, auditing against the standards suggests the consistency of involvement could be improved. Referrals for PPC were inadequate and largely for end-of-life phase. Sibling support, in particular donor siblings, had insufficient psychological assessment and support. Key recommendations are provided to address this underperformance. Full article
10 pages, 388 KiB  
Opinion
Lessons in Stories: Why Narrative Medicine Has a Role in Pediatric Palliative Care Training
by Natalie Lanocha
Children 2021, 8(5), 321; https://0-doi-org.brum.beds.ac.uk/10.3390/children8050321 - 22 Apr 2021
Cited by 13 | Viewed by 3190
Abstract
Narrative medicine is introduced and explored as a potential tool for developing competency in medical training, including reduction of burnout, sustaining empathy, and allowing for reflective practice. Developing cultural humility, communication skills, ethics, community building, and advocacy are also reviewed as domains that [...] Read more.
Narrative medicine is introduced and explored as a potential tool for developing competency in medical training, including reduction of burnout, sustaining empathy, and allowing for reflective practice. Developing cultural humility, communication skills, ethics, community building, and advocacy are also reviewed as domains that may be bolstered by training in narrative. Applications specific to pediatric palliative care are suggested, along with avenues for further research. Full article
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30 pages, 627 KiB  
Review
Current Grief Support in Pediatric Palliative Care
by Taryn Schuelke, Claire Crawford, Rachel Kentor, Heather Eppelheimer, Cristina Chipriano, Kirstin Springmeyer, Allison Shukraft and Malinda Hill
Children 2021, 8(4), 278; https://0-doi-org.brum.beds.ac.uk/10.3390/children8040278 - 4 Apr 2021
Cited by 19 | Viewed by 8510
Abstract
Grief support changes as more is learned from current grief theory and research. The authors provide a comprehensive overview of current grief support as it relates to Pediatric Palliative Care (PPC). The following aspects of grief are addressed: (1) anticipatory grief: the nondeath [...] Read more.
Grief support changes as more is learned from current grief theory and research. The authors provide a comprehensive overview of current grief support as it relates to Pediatric Palliative Care (PPC). The following aspects of grief are addressed: (1) anticipatory grief: the nondeath losses that occur with a complex and chronic illness, as well as the time leading up to death; (2) grief around the time of death: the intense and sacred experience of companioning with a dying child; (3) grief after death: supporting bereavement and mourning through programing and other methods; (4) innovative approaches: the future of grief support. The contents of this article are meant to support and educate programs currently providing grief services and those aiming to begin the meaningful work of grief support. Full article
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11 pages, 511 KiB  
Article
Use of Paclitaxel to Successfully Treat Children, Adolescents, and Young Adults with Kaposi Sarcoma in Southwestern Tanzania
by Hamidu Adinani, Liane Campbell, Nader Kim El-Mallawany, Jeremy Slone, Parth Mehta and Jason Bacha
Children 2021, 8(4), 275; https://0-doi-org.brum.beds.ac.uk/10.3390/children8040275 - 2 Apr 2021
Cited by 6 | Viewed by 2478
Abstract
Treating Kaposi sarcoma (KS) in children, adolescents, and young adults (AYA) remains a challenge in low- and middle-income countries (LMIC) where chemotherapy options and availability are limited. We describe a retrospective cohort review of pediatric patients with KS treated with paclitaxel in Mbeya, [...] Read more.
Treating Kaposi sarcoma (KS) in children, adolescents, and young adults (AYA) remains a challenge in low- and middle-income countries (LMIC) where chemotherapy options and availability are limited. We describe a retrospective cohort review of pediatric patients with KS treated with paclitaxel in Mbeya, Tanzania, between 1 March 2011 and 31 December 2019. Paclitaxel was given to patients who had KS relapse, a contraindication to bleomycin, vincristine, and doxorubicin (ABV), special circumstances in which a clinician determined that paclitaxel was preferable to ABV, or experienced treatment failure, defined as persistent KS symptoms at the completion of treatment. All patients also received multidisciplinary palliative care. Seventeen patients aged 5.1–21.3 years received paclitaxel, of whom 47.1% (8/17) had treatment failure, 29.4% (5/17) received paclitaxel as initial treatment, and 23.5% (4/17) had relapsed. All HIV positive patients (16/17) were given anti-retroviral therapy (ART) and 87.5% (14/16) achieved viral load <1000 cp/mL. At censure, 82.3% (14/17) of patients were alive—71.4% (10/14) achieved complete clinical remission and 28.6% (4/14) achieved a partial response. The median follow up was 37.3 months (range 8.0–83.5, IQR 19.7–41.6), and no patients were lost to follow up. In this cohort, high rates of long-term survival and favorable outcomes were possible with paclitaxel treatment. Full article
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10 pages, 2331 KiB  
Case Report
Successful Use of Multidisciplinary Palliative Care in the Outpatient Treatment of Disseminated Histoplasmosis in an HIV Positive Child
by Alison Lopez, Jason Bacha, Carrie Kovarik and Liane Campbell
Children 2021, 8(4), 273; https://0-doi-org.brum.beds.ac.uk/10.3390/children8040273 - 2 Apr 2021
Cited by 1 | Viewed by 2572
Abstract
Histoplasmosis is an uncommon opportunistic infection in human immunodeficiency virus (HIV) positive children. The most common form is primary disseminated histoplasmosis, characterized by persistent fever and failure to thrive. A 10-year-old HIV positive girl presented to the Baylor College of Medicine Children’s Foundation—Tanzania [...] Read more.
Histoplasmosis is an uncommon opportunistic infection in human immunodeficiency virus (HIV) positive children. The most common form is primary disseminated histoplasmosis, characterized by persistent fever and failure to thrive. A 10-year-old HIV positive girl presented to the Baylor College of Medicine Children’s Foundation—Tanzania Mbeya Center of Excellence (COE) with ulcerated skin lesions and a violaceous facial rash. She also had persistent fevers, severe acute malnutrition, and severe anemia. At diagnosis, the patient was failing first line antiretroviral therapy (ART) with a cluster of differentiation 4 immune cells (CD4) of 24 cells/µL and an HIV viral load (VL) of 196,658 cp/mL. The patient was changed to a second line ART regimen (abacavir, lamivudine, and ritonavir-boosted lopinavir) and received nutritional support, blood transfusions, multiple antibiotics, and meticulous wound care. She also received comprehensive symptom management, psychosocial support, and emergency housing through the COE’s palliative care program. Biopsy of a lesion showed intracytoplasmic organisms consistent with Histoplasmosis capsulatum var capsulatum. The patient was treated with conventional amphotericin B and oral itraconazole and she achieved wound healing as well as immune reconstitution and HIV viral suppression. Amphotericin infusions were given as an outpatient despite the resource constraints of the setting in southwestern Tanzania. Histoplasmosis should be considered in the differential diagnosis of the immunocompromised host with unusual skin manifestations and persistent fever. Full article
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10 pages, 259 KiB  
Review
Quality Indicators in Pediatric Palliative Care: Considerations for Latin America
by Gregorio Zuniga-Villanueva, Jorge Alberto Ramos-Guerrero, Monica Osio-Saldaña, Jessica A. Casas, Joan Marston and Regina Okhuysen-Cawley
Children 2021, 8(3), 250; https://0-doi-org.brum.beds.ac.uk/10.3390/children8030250 - 23 Mar 2021
Cited by 7 | Viewed by 4285
Abstract
Pediatric palliative care is a growing field in which the currently available resources are still insufficient to meet the palliative care needs of children worldwide. Specifically, in Latin America, pediatric palliative care services have emerged unevenly and are still considered underdeveloped when compared [...] Read more.
Pediatric palliative care is a growing field in which the currently available resources are still insufficient to meet the palliative care needs of children worldwide. Specifically, in Latin America, pediatric palliative care services have emerged unevenly and are still considered underdeveloped when compared to other regions of the world. A crucial step in developing pediatric palliative care (PPC) programs is delineating quality indicators; however, no consensus has been reached on the outcomes or how to measure the impact of PPC. Additionally, Latin America has unique sociocultural characteristics that impact the perception, acceptance, enrollment and implementation of palliative care services. To date, no defined set of quality indicators has been proposed for the region. This article explores the limitations of current available quality indicators and describes the Latin American context and how it affects PPC development. This information can help guide the creation of standards of care and quality indicators that meet local PPC needs while considering the sociocultural landscape of Latin America and its population. Full article
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17 pages, 687 KiB  
Article
Electronic Health Records in Specialized Pediatric Palliative Care: A Qualitative Needs Assessment among Professionals Experienced and Inexperienced in Electronic Documentation
by Dorothee Meyer, Sven Kernebeck, Theresa Sophie Busse, Jan Ehlers, Julia Wager, Boris Zernikow and Larissa Alice Dreier
Children 2021, 8(3), 249; https://0-doi-org.brum.beds.ac.uk/10.3390/children8030249 - 23 Mar 2021
Cited by 4 | Viewed by 2815
Abstract
Background: Currently, to the best of our knowledge, no findings exist concerning the needs of professionals in specialized pediatric palliative care (PPC) regarding electronic health records (EHRs). Several studies have highlighted benefits concerning the use of EHRs in pediatrics. However, usability is strongly [...] Read more.
Background: Currently, to the best of our knowledge, no findings exist concerning the needs of professionals in specialized pediatric palliative care (PPC) regarding electronic health records (EHRs). Several studies have highlighted benefits concerning the use of EHRs in pediatrics. However, usability is strongly affected by the degree of adaptivity to the context of application. The aim of this study is to examine the needs of professionals concerning an EHR in the specialized PPC inpatient and outpatient settings. Methods: A qualitative research design was chosen to address the complex aspects of user demands. Focus group interviews and semi-structured one-on-one interviews were conducted with PPC professionals. N = 23 participants from inpatient and N = 11 participants from outpatient settings of specialized PPC representing various professions took part in the study. Results: The findings could be grouped into four categories: (1) attitude towards the current methods of documentation, (2) attitude towards electronic documentation in general, (3) general requirements for an EHR, and (4) content requirements for an EHR. Conclusions: Professionals in specialized PPC expect and experience many benefits of using electronic documentation. Their requirements for an EHR for inpatient and outpatient settings of PPC are largely consistent with EHRs for pediatrics. However, individual specifications and adaptations are necessary for this particular setting. Full article
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7 pages, 216 KiB  
Review
Alleviating Terminal Pediatric Cancer Pain
by Karen Moody, Mohammad Baig and Veronica Carullo
Children 2021, 8(3), 239; https://0-doi-org.brum.beds.ac.uk/10.3390/children8030239 - 19 Mar 2021
Cited by 3 | Viewed by 3761
Abstract
Terminal cancer pain remains one of the most distressing aspects of pediatric oncology practice. Opioids are the cornerstone of cancer pain management at end-of-life and fortunately, most pain at end-of-life can be managed successfully. This article presents a practical step-by-step approach to alleviating [...] Read more.
Terminal cancer pain remains one of the most distressing aspects of pediatric oncology practice. Opioids are the cornerstone of cancer pain management at end-of-life and fortunately, most pain at end-of-life can be managed successfully. This article presents a practical step-by-step approach to alleviating pediatric terminal cancer pain, which can be delivered across settings. Full article
14 pages, 940 KiB  
Article
Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care
by Lourdes Chocarro González, Manuel Rigal Andrés, Julio C. de la Torre-Montero, Marta Barceló Escario and Ricardo Martino Alba
Children 2021, 8(3), 178; https://0-doi-org.brum.beds.ac.uk/10.3390/children8030178 - 26 Feb 2021
Cited by 4 | Viewed by 3406
Abstract
Background: Pediatric palliative cares involve the whole family, along with the interdisciplinary pediatric palliative care (PPC) team. The commitment of the PPC team and the engagement of the family at different levels can play a key role in advancing a better quality of [...] Read more.
Background: Pediatric palliative cares involve the whole family, along with the interdisciplinary pediatric palliative care (PPC) team. The commitment of the PPC team and the engagement of the family at different levels can play a key role in advancing a better quality of life in children and families. Method: A descriptive pre-post educational intervention study was carried out. The creation of a training program (with the term “school” used to denote this effort) strives to prepare caretakers to master the skills as well as provide support for the care of children with serious conditions requiring palliative through home-based initiatives. The analysis includes aspects of learning and satisfaction with the activity in a final sample of 14 families who had one child enrolled into a home-based palliative care program. Results: After the educational intervention in our school, the mean score of the theoretical evaluation was 9.14 points (SD 0.96), showing improvement with respect to the initial assessment, (mean diff. of +0.98 points). Although the analysis of all conceptual areas demonstrates a trend towards a positive impact of the intervention, feeding-related instruction saw the highest level of improvement, with a mean difference of +1.43 points. All enrolled parents expressed having a very positive experience during their participation in the educational program. Conclusions: The educational program showed a positive trend in the acquisition of knowledge and skills, resulting in a positive impact on the self-perception of their abilities. This psycho-educational space allowed them to share their experience of daily care for a child with complex needs with other families, showing them that they were not alone and that they could help each other. Full article
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11 pages, 331 KiB  
Article
Insights into the Frequency and Distinguishing Features of Sleep Disorders in Pediatric Palliative Care Incorporating a Systematic Sleep Protocol
by Larissa Alice Dreier, Boris Zernikow, Kathrin Stening and Julia Wager
Children 2021, 8(1), 54; https://0-doi-org.brum.beds.ac.uk/10.3390/children8010054 - 17 Jan 2021
Cited by 7 | Viewed by 2445
Abstract
Currently, no concrete figures on sleep disorders and sleep characteristics in children and adolescents with life-limiting conditions (LLC) and severe neurological impairment (SNI) based on pediatric palliative care professionals’ assessment and following an official classification system such as the International Classification of Sleep [...] Read more.
Currently, no concrete figures on sleep disorders and sleep characteristics in children and adolescents with life-limiting conditions (LLC) and severe neurological impairment (SNI) based on pediatric palliative care professionals’ assessment and following an official classification system such as the International Classification of Sleep Disorders (ICSD-3) exist. The ICSD-3 sleep disorders of inpatient children and adolescents with LLC and SNI (N = 70) were assessed by professionals using a recording sheet (two-year recruitment period). A systematic sleep protocol was applied to identify patients’ sleep characteristics. Of these patients, 45.6% had sleep disorders, with the majority of them experiencing two different ones. Overall, the most frequently identified disorders were Chronic Insomnia and Circadian Sleep–Wake Disorder. Patients experiencing Chronic Insomnia showed more sleep phases during the daytime and more waking phases at nighttime than those unaffected. Patients with and without a Circadian Sleep–Wake Disorder additionally differed in the length of sleep phases during the daytime. Rapid changes between wakefulness and sleep were specifically characteristic of Hypersomnia. The study provides important insights into the prevalence and characteristics of individual ICSD-3 sleep disorders in pediatric palliative care. The findings may contribute to a targeted and efficient diagnosis and therapy of distressing sleep problems in seriously ill patients. Full article
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2020

Jump to: 2022, 2021

15 pages, 600 KiB  
Article
Opioid-Induced Respiratory Depression in Pediatric Palliative Care Patients with Severe Neurological Impairment—A Scoping Literature Review and Case Reports
by Maximilian David Mauritz, Carola Hasan, Larissa Alice Dreier, Pia Schmidt and Boris Zernikow
Children 2020, 7(12), 312; https://0-doi-org.brum.beds.ac.uk/10.3390/children7120312 - 21 Dec 2020
Cited by 1 | Viewed by 3372
Abstract
Pediatric Palliative Care (PPC) addresses children, adolescents, and young adults with a broad spectrum of underlying diseases. A substantial proportion of these patients have irreversible conditions accompanied by Severe Neurological Impairment (SNI). For the treatment of pain and dyspnea, strong opioids are widely [...] Read more.
Pediatric Palliative Care (PPC) addresses children, adolescents, and young adults with a broad spectrum of underlying diseases. A substantial proportion of these patients have irreversible conditions accompanied by Severe Neurological Impairment (SNI). For the treatment of pain and dyspnea, strong opioids are widely used in PPC. Nonetheless, there is considerable uncertainty regarding the opioid-related side effects in pediatric patients with SNI, particularly concerning Opioid-Induced Respiratory Depression (OIRD). Research on pain and OIRD in pediatric patients with SNI is limited. Using scoping review methodology, we performed a systematic literature search for OIRD in pediatric patients with SNI. Out of n = 521 identified articles, n = 6 studies were included in the review. Most studies examined the effects of short-term intravenous opioid therapy. The incidence of OIRD varied between 0.13% and 4.6%; besides SNI, comorbidities, and polypharmacy were the most relevant risk factors. Additionally, three clinical cases of OIRD in PPC patients receiving oral or transdermal opioids are presented and discussed. The case reports indicate that the risk factors identified in the scoping review also apply to adolescents and young adults with SNI receiving low-dose oral or transdermal opioid therapy. However, the risk of OIRD should never be a barrier to adequate symptom relief. We recommend careful consideration and systematic observation of opioid therapy in this population of patients. Full article
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