Browse Items · Pediatric Palliative Care Library

Pediatric palliative care in Canada

Pediatric palliative care (PPC) emerged during the late 20th century in Canada. It has steadily expanded and there are now programs in every province. Programs adhere to recognized standards of practice at both federal and provincial levels. PPC is…

Tags: 2023, Article, Canada, Child, Current Problems in Pediatric and Adolescent Health Care, February List 2024, government, Human, Marquis MA, Palliative Therapy, Payot A

Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria: Improving Prenatal Palliative Care Consultation through Quality Improvement

Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal…

Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study

Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are…

Changes in the End-of-Life Process in Patients with Life-Limiting Diseases through the Intervention of the Pediatric Palliative Care Team

Kyungpook National University Children's Hospital initiated pediatric palliative care (PPC) services in January 2019, focusing on children and adolescents with life-limiting conditions (LLC). A study examined changes in the end-of-life processes in…

Relevance of Potential Contributing Factors for the Development and Maintenance of Irritability of Unknown Origin in Pediatric Palliative Care

Potential contributing factors (PCFs) for irritability of an unknown origin (IUO) in children with neurological conditions are identifiable through structured diagnostics. Uncertainty exists regarding the actual relevance of identified PCFs to IUO.…

Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit

Families and clinicians approaching a child's death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child's best interest,…

Implementation of an Innovative Palliative Care Screening Tool in the Pediatric Intensive Care Unit: A Pilot Study

Background: Pediatric palliative care (PPC) can improve the quality of care provided to critically ill children with a high risk of morbidity and mortality. Early identification of patients admitted to the pediatric intensive care unit (PICU) who may…

The Relationship Between Dyspnea Severity with Radiological and Laboratory Findings in Pneumonia in Children in Pediatric Palliative Care

In care patients; pneumonia is common due to being bedridden, atrophy of respiratory muscles and use of medical devices. Dyspnea is the second most common symptom after pain in pediatric palliative care. In this study, it was aimed to examine the…

Optimizing resource utilization: Palliative care consultations in critically ill pediatric trauma patients

The American College of Surgeons Trauma Quality Improvement Program (TQIP) and Committee on Trauma released a best practice guideline for palliative care in trauma patients in 2017. Utilization of pediatric palliative care services for pediatric…

The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care

Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals,…

A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit

To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a…

Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis

The demands of caring for a child with a life-limiting condition can have a profound impact on parents' health and wellbeing. Currently, there is no standard procedure for identifying and addressing the support needs of these parents. Aim: To assess…

Development of an Institution-Wide Pediatric End-of-Life Summit

End-of-life (EOL) care in pediatrics is a unique subspecialty lacking adequate provider education and training. Patient and family outcomes may improve when clinicians are provided with training in this care. Recognizing the need for this specialized…

Tags: 2023, Abecassis L, Article, Beke DM, Bereavement, Child, Clinician, Edson J, February List 2024, Human, Journal of Hospice and Palliative Nursing, McGorman T, Medical Society, School Child, special situation for pharmacovigilance, teaching hospital, Terminal Care

Withholding life support for children with severe neurological impairment: Prevalence and predictive factors prior to admission in the PICU

Our study aimed to evaluate the prevalence and predictive factors of withholding life support for children suffering from severe neurological impairment before admission to the pediatric intensive care unit (PICU). Method: Children under 18 years of…

Understanding Adult Hospices Caring for Children in California, 2018-2021

In areas where there are absences of pediatric hospice care, adult hospices are often asked to provide hospice care for children. Little is known about these adult hospices. The purpose of our study was to describe the characteristics of adult…

In every detail: spiritual care in pediatric palliative care perceived by healthcare providers

Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country. Objectives: To…

Pediatric palliative care in Sweden

In Sweden, the governance of healthcare is decentralized, so PC is provided with regional or local differences in organization, level of competence, and recourses. Ongoing regional and national initiative to increase quality of pediatric palliative…

Tags: 2023, Adolescent, Article, Castor C, Child, Current Problems in Pediatric and Adolescent Health Care, Decision Making, Diagnosis, February List 2024, health care facility, Human, Infant, Iveus K, Kreicbergs U, Male, Palliative Therapy, Sweden, Therapy

A shared decision-making model in pediatric palliative care: a qualitative study of healthcare providers

Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. However, to our knowledge, there are…

Lactation Support as a Proxy Measure of Family-Centered Care Quality in Neonates with Life-Limiting Conditions-A Comparative Study

Lactation support is an important measure of Family-Centered Care (FCC) in the Neonatal Intensive Care Unit (NICU). Life-limiting conditions (LLCs) raise complex ethical care issues for providers and parents in the NICU and represent a key and often…

Tags: 2023, Article, Brannon M, breast feeding, breast pump, Brito S, Cerebral Palsy, Chahin N, Children, clinical assessment, Cognitive Defect, Cohort Analysis, Comparative Study, Congenital Heart Disease, Controlled Study, do not resuscitate order, Donor Milk, extracorporeal oxygenation, Family Centered Care, February List 2024, Female, Fox J, gastrointestinal disease, Genetic Disorder, Gestational Age, health disparity, Hendricks-Munoz KD, Hospital Admission, hospital discharge, Human, hypoxic ischemic encephalopathy, incurable disease, Infant, kidney disease, lactation, learning disorder, Length Of Stay, Life limiting condition, Lung Disease, Major Clinical Study, Male, McCarthy K, Mohammed T, Mortality, Neonatal Intensive Care Unit, Neurologic Disease, Nubayaat L, Nunlist S, nutritional deficiency, Retrospective Study, Seizure, sensory dysfunction, Williams A, Xu J

Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years

Perinatal palliative care is an emerging branch of children's palliative care. This study sought to better understand the pattern of antenatal referrals and the role of a specialist paediatric palliative care (PPC) team in supporting families…

The burden and scope of childhood cancer in displaced patients in Jordan: The King Hussein Cancer Center and Foundation Experience

Introduction: Jordan hosts one of the highest numbers of refugees per capita in the world, with the Syrian crisis leading to an influx of displaced persons to the already vulnerable population. However, limited resources and a lack of cancer-care…

Assessing the Need for Pediatric Palliative Care in the Six Arab Gulf Cooperation Council Countries

Background: Palliative care is an essential element of universal health coverage. However, palliative care services, particularly pediatric palliative care (PPC) services, are still inadequately developed in many countries, not least members of the…

Psychometric properties of the Turkish version of the Stress Scale for Nurses Providing End-of-Life Care for Children

OBJECTIVES: This study was carried out to evaluate the validity and reliability of the Stress Scale for Pediatric Nurses Performing End-of-Life Care for Children in Turkey. METHOD(S): This was a methodological study conducted with 222 pediatric…

Effects of COVID-19 on Pediatric Cancer Care: A Multicenter Study of 11 Middle Eastern Countries

During the COVID-19 pandemic, major challenges are facing pediatric cancer centers regarding access to cancer centers, continuity of the anti-cancer therapy, hospital admission, and infection protection precautions. Pediatric oncologists actively…

Tags: 2023, 2023 SE5 - Low Resource Setting, Abdelmabood S, Ahmad S, Ahmed S, Al Daama SA, Al Mashaikhi N, Al Rawas A, Al-Hebshi A, Al-Mulla NA, Al-Sweedan S, Alhadi A, Alharbi I, Almajali RM, Alshamsi ET, Article, Bayoumy MS, Boudiaf H, cancer center, Cancer Chemotherapy, Cancer Palliative Therapy, cancer radiotherapy, cancer surgery, Cancer Therapy, Childhood Cancer, coronavirus disease 2019, Dammag E, drug shortage, Elzembely MM, emergency surgery, Fadel SH, Farah R, Gachi F, granulocyte colony stimulating factor/pv [Special Situation for Pharmacovigilance], Haddad H, Health Care Access, Health Care Availability, high income country, Human, Ibrahim AK, Journal Of Pediatric Hematology/oncology, Kaleem WK, low income country, Madney Y, Middle East, middle income country, Mohammad HS, Pandemic, pediatric oncologist, prophylaxis, Ragab I, Ragab SM, Salami KH, social distancing, social status, Sultan I, Telemedicine, therapy delay, Zain GH, Zein AA

Real World Presentation and Treatment Outcomes with a Predominant Induction Chemotherapy Based Approach in Nasopharyngeal Carcinoma: A Sixteen Year Report from a Teaching Hospital in India

Introduction: Nasopharyngeal carcinoma (NPC) is a rare malignancy in India except in north-eastern states. We present our institutional experience of 16 years highlighting management, outcomes, responses and toxicities. Material(s) and Method(s): NPC…

Tags: 2023, 2023 SE5 - Low Resource Setting, adjuvant therapy, Adolescent, Adult, Aged, albumin/ec [Endogenous Compound], Anemia, antiemetic agent, Article, Bahadur S, Bhasker S, Biswas A, bone metastasis, Cancer Investigation, Cancer Recurrence, Cancer Staging, capecitabine/dt [Drug Therapy], carboplatin/cb [Drug Combination], carboplatin/dt [Drug Therapy], cervical lymph node, chemoradiotherapy, Child, cisplatin/ae [Adverse Drug Reaction], cisplatin/cb [Drug Combination], cisplatin/dt [Drug Therapy], cisplatin/to [Drug Toxicity], cobalt therapy, Cohort Analysis, cranial nerve paralysis, cyclophosphamide/cb [Drug Combination], cyclophosphamide/dt [Drug Therapy], date of death, Diarrhea, diplopia, distant metastasis, docetaxel/cb [Drug Combination], docetaxel/dt [Drug Therapy], dysphasia, epirubicin/cb [Drug Combination], epirubicin/dt [Drug Therapy], exophthalmos, febrile neutropenia, Female, fluorouracil/cb [Drug Combination], fluorouracil/dt [Drug Therapy], Follow Up, gemcitabine/dt [Drug Therapy], Gogi R, Headache, hearing impairment, Histopathology, Hospitalization, Human, hypothyroidism, India, induction chemotherapy, Intensity Modulated Radiation Therapy, Kumar R, liver metastasis, lung metastasis, Major Clinical Study, Male, Mohanti BK, mucosa inflammation, multiple cycle treatment, nasopharynx carcinoma/dt [Drug Therapy], nasopharynx carcinoma/rt [Radiotherapy], nasopharynx carcinoma/su [Surgery], neck dissection, neck swelling, Neutropenia, nose obstruction, overall response rate, Overall Survival, paclitaxel/cb [Drug Combination], paclitaxel/dt [Drug Therapy], palliative chemotherapy, peripheral neuropathy, Pramanik R, primary tumor/rt [Radiotherapy], progression free survival, Radiotherapy Dosage, Retrospective Study, Salvage Therapy, Sharma A, Sikka K, Singh AC, Smoking, Spinal cord, survival prediction, teaching hospital, Thakar A, thrombocytopenia, Thulkar S, toxicity/si [Side Effect], treatment interruption, Treatment Outcome, trismus, Vomiting, xerostomia

Children's understanding of dying and death: A multinational grounded theory study

OBJECTIVES: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which…

Clinical and genetic characteristics of Tunisian children with infantile nephropathic cystinosis

Background: Nephropathic cystinosis is an autosomal recessive disease caused by a mutation in the CTNS gene which encodes cystinosin, a lysosomal cystine transporter. The spectrum of mutations in the CTNS gene is not well defined in the North African…

Tags: 2023, 2023 SE5 - Low Resource Setting, Achour A, Article, Ben Youssef S, bicarbonate/dt [Drug Therapy], bicarbonate/pv [Special Situation for Pharmacovigilance], calcitriol/dt [Drug Therapy], calcitriol/pv [Special Situation for Pharmacovigilance], Child, citrate potassium/dt [Drug Therapy], citrate potassium/pv [Special Situation for Pharmacovigilance], Clinical Article, Clinical Feature, Controlled Study, CTNS gene, cystine/ec [Endogenous Compound], cystinosis/di [Diagnosis], cystinosis/dt [Drug Therapy], El Younsi M, exon, Fanconi renotubular syndrome, Female, founder mutation, Gargah T, gene, Gene Deletion, gene mutation, genetic analysis, genetic trait, Hammi Y, heterozygosity, homozygosity, Human, hypothyroidism/dt [Drug Therapy], Infant, infantile nephropathic cystinosis/di [Diagnosis], infantile nephropathic cystinosis/dt [Drug Therapy], Information Processing, Kharrat M, kidney disease/di [Diagnosis], kidney disease/dt [Drug Therapy], M'Rad R, Maazoul F, Male, mercaptamine/dt [Drug Therapy], mercaptamine/pv [Special Situation for Pharmacovigilance], molecular diagnosis, molecular fingerprinting, Only Child, Ouertani I, Palliative Therapy, Pediatric Nephrology, pediatric patient, Prenatal Diagnosis, Preschool Child, Retrospective Study, RNA splicing, Sanger sequencing, thyroid hormone/dt [Drug Therapy], thyroid hormone/pv [Special Situation for Pharmacovigilance], Trabelsi M, Tunisian

Use of paclitaxel to successfully treat children, adolescents, and young adults with Kaposi sarcoma in southwestern Tanzania

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…

Tags: 2021, 2023 SE5 - Low Resource Setting, Adinani H, Adolescent, Adult, antiretroviral therapy, antiretrovirus agent/dt [Drug Therapy], Article, Bacha J, bleomycin/cb [Drug Combination], bleomycin/dt [Drug Therapy], bleomycin/iv [Intravenous Drug Administration], Campbell L, cancer combination chemotherapy, Cancer Palliative Therapy, Cancer Recurrence, Cancer Survival, Child, Children, Cohort Analysis, dexamethasone/dt [Drug Therapy], doxorubicin/cb [Drug Combination], doxorubicin/dt [Drug Therapy], drug contraindication, El-Mallawany NK, Female, Follow Up, Human, Human immunodeficiency virus infection/dt [Drug Therapy], Kaposi sarcoma/dt [Drug Therapy], lack of drug effect, long term survival, Major Clinical Study, Male, Mehta P, multiple cycle treatment, Paclitaxel, paclitaxel/dt [Drug Therapy], Quality Of Life, Retrospective Study, Slone J, Tanzania, treatment duration, Treatment Outcome, Treatment Planning, trend study, vincristine/cb [Drug Combination], vincristine/dt [Drug Therapy], vincristine/iv [Intravenous Drug Administration], virus load, Young Adult

Children with palliative care needs in Papua New Guinea, and perspectives from their parents and health care workers: a qualitative study

Introduction: The World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be…

Tags: 2023, 2023 SE5 - Low Resource Setting, acute lymphoblastic leukemia/di [Diagnosis], Adolescent, Adult, Anga G, Article, BMC Palliative Care, bronchiectasis/di [Diagnosis], Cerebral Palsy/di [Diagnosis], Child, Child Health Care, Clinical Article, congenital heart disease/di [Diagnosis], congenital malformation/di [Diagnosis], Controlled Study, Descriptive Research, Duke T, dyspnea/co [Complication], Female, germ cell tumor/di [Diagnosis], Guillain Barre syndrome/di [Diagnosis], health care need, Health Care Personnel, Health Care Quality, hemosiderosis/di [Diagnosis], Human, Human immunodeficiency virus infection/di [Diagnosis], Infant, Interview, job experience, Kilalang C, knowledge gap, Male, malignant neoplasm/di [Diagnosis], Medical Record, Melanesia, neuroblastoma/di [Diagnosis], Only Child, Pacific Islands, Pain/co [complication], Palliative Care, Palliative Therapy, Papua New Guinea, Parent, pediatric ward, Preschool Child, pulmonary hypertension/di [Diagnosis], Pulsan F, Qualitative Research, retinoblastoma/di [Diagnosis], School Child, thalassemia/di [Diagnosis], Thematic Analysis, tuberculosis/di [Diagnosis], Vince JD, Watch V

"It Seems Like a Bad Thing": US South Asian Youths' Perspectives About the Use of Hospice Care

BACKGROUND: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use. OBJECTIVE(S): This study explored US…

Development of Children's Palliative Care in Perm Krai

Palliative care as a system is presented in Russia for a little over 10 years. Moreover, such care in every region has its own local-specific scheme and infrastructure. This article presents the results the analysis of palliative care state and…

Tags: 2023, 2023 SE5 - Low Resource Setting, Article, Baranova SP, Berber IE, Child, Current Pediatrics, Dolgomirova NV, Human, Islamova RI, Minaeva NV, Only Child, Palliative Care, Palliative Therapy, Russian Federation

Hospice Care in India-A Pediatrician's Perspective

Hospice care plays a vital role in providing compassionate and holistic support to terminally ill patients and their families. While hospice care has gained recognition and acceptance globally, its implementation and understanding in the context of…

Tags: 2023, 2023 SE5 - Low Resource Setting, Article, Child, Ghoshal A, Hospice Care, Hospices, Human, India, Malignant Neoplasm, Nair M, Palliative Therapy, pediatric patient, Pediatrician, South Asian Journal of Cancer, terminally Ill Patient

Factors associated with mental health service use among families bereaved by pediatric cancer

OBJECTIVES: We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families.…

Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative study

Introduction: Effective communication in pediatric palliative cancer care is an important aspect of practice to enhance patient- and family-centered care, and to optimize decision-making. However, little is known about communication preferences…

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