Browse Items · Pediatric Palliative Care Library

Is it early enough? The authentic meaning of the pediatric palliative approach between early and late referral in pediatric oncology: a case study

The literature widely supports the benefits of early integration of palliative care into pediatric oncological care; however, many barriers to its successful integration remain. Integrating palliative care as early as possible in the oncology pathway…

Tags: 2024, 2025 SE1 - Oncology, Adolescent, Adult, Advance Care Planning, Affinita MC, anxiety, Article, Artificial Ventilation, Avagnina I, Benini F, Brain Metastasis, Child, Childhood Cancer, Clinical Article, cognitive behavioral therapy, colonoscopy, community hospital, computed tomographic angiography, doctor patient relationship, Dysphagia, Dyspnea, facial nerve paralysis, Female, Follow Up, Frontiers in Oncology, Headache, Health Promotion, hearing impairment, hematothorax, hemoptysis, Hospitalization, Human, Intensive Care Unit, Life Expectancy, Morphine, nerve paralysis, neurofibromatosis type 1, nuclear magnetic resonance imaging, Oncology, oncology ward, Palliative Therapy, Patient Referral, Quality Of Life, Questionnaire, refugee, Rhabdomyosarcoma, Santini A, Terminal Care, thorax pain, tracheobronchial toilet, Verbal Communication, visual field, Zanin A

Experiences of Pediatric Palliative Care Among Bereaved Parents Who Lost a Child With Leukemia in South Korea

Realities and ideals: Experiences and needs of pediatric oncology nurses in communication processes with children and their families at the end-of-life period: A photovoice qualitative study

Effective communication in end-of-life care for pediatric cancer patients is crucial. Yet, limited research focuses on the communication experiences of pediatric oncology nurses during this period. This study aims to investigate the communication…

Taboo words in pediatric oncology: Communication experiences of nurses and physicians with dying children and their families

Purpose: Despite the numerous benefits of effective communication between patients, families, and healthcare professionals, there are still substantial barriers and communication challenges. This study investigated the experiences of nurses and…

The role of 'familiarity' and 'normality' in supporting transition to end of life care in paediatric oncology: A qualitative study

Aim: The aim of this study was to explore factors that helped when a child with cancer transitioned to end of life care in a hospital setting. Design: Qualitative exploratory design using reflexive thematic analysis. Methods: In-depth,…

Exploring learners' perspectives of a pediatric palliative care tele-mentoring and education program (project Echo) in a resource-limited setting

INTRODUCTION/BACKGROUND: More than 98% of children who need palliative care live in low- or middle-income countries where access to palliative care is extremely limited. A lack of palliative care education for health care providers has been…

Decision-Making Factors in Advanced or Incurable Childhood Cancer Diagnosis in Low- and Middle- Income Countries

Outcomes: 1. Using a structured approach, participants will self-report the ability to understand the static and dynamic factors that influence treatment decision-making at diagnosis for children presenting with advanced cancer in LMICs. 2.…

Developing a toolkit to support parents' involvement in child death review: an experience-based co-design study

Abstract Background: Understanding why children die is important for grieving parents and for informing system improvements aimed at prevention and future care. Many countries have child death review (CDR) process, but little is known about how best…

Virtual Support for Bereaved Parents: Acceptability, Feasibility, and Preliminary Efficacy of HOPE Group

Abstract Introduction: Hospital-based supports for families following the death of a child are rare. Virtual interventions may address key barriers to providing bereavement care, but little is known about their acceptability, feasibility, and…

"Death is Not a Dirty Word:" A Qualitative Study of Emergency Clinician End-of-Life Communication

OBJECTIVES: Pediatric patients with life-limiting diagnoses frequently seek care in the pediatric emergency department (PED) during times of acute illness, or at end-of-life (EOL) . Although the population of patients with life-limiting diagnoses is…

Living with Pompe disease: results from a qualitative interview study with children and adolescents and their caregivers

Background: Children and adolescents with Pompe disease (PD) face chronic and progressive myopathy requiring time-intensive enzyme replacement therapy (ERT). Little is known about their perspectives on the disease and its treatment. This study…

Tags: 2024, Adolescent, Adult, Article, Caregiver, Child, Clinical Article, cognitive behavioral therapy, Content Analysis, content validity, Disease Severity, Dyspnea, Emotion, emotional appraisal, enzyme replacement, Fatigue, February List 2025, Female, glycogen storage disease type 2, Hahn A, Hennermann JB, Home Care, Huemer M, Human, inborn error of metabolism, Lagler FB, Landolt MA, Life Expectancy, Male, MAXQDA software, Moslinger D, Multicenter Study, Muscle Weakness, musculoskeletal pain, Orphanet Journal Of Rare Diseases, Pain, Pain Intensity, Palliative Therapy, Perception, Pfrimmer C, psychosocial care, Qualitative Analysis, Qualitative Research, Quality Of Life, Questionnaire, Rohrbach M, School Child, Semi Structured Interview, Severity Of Illness Index, social exclusion, Social Support, sore throat, Truninger MI, Vomiting, Werner H, Young Adult

Exploring the Role of Genetic Testing in Decisions to Redirect Care in Critically Ill Infants

OBJECTIVE: Genetic disorders are a major determinant of morbidity and mortality within neonatal intensive care units (NICUs). Studies have found genetic testing in critically ill infants may lead to changes in clinical decisions such as pursuing end…

Demographic and clinical profile of children with congenital heart diseases receiving palliative care

Background: The role of pediatric palliative care (PPC) is well described in oncology, however, its involvement in children with congenital heart disease (CHD) is not well explored. Method(s): This prospective interventional study was conducted on…

CHILDREN WITH LIFE-LIMITING CONDITIONS USING NONINVASIVE VENTILATION: PARENT PERSPECTIVES

SESSION TITLE: Pediatric Potpourri SESSION TYPE: Original Investigations PRESENTED ON: 10/06/2024 01:30 pm - 02:30 pm PURPOSE: Non-invasive ventilation (NIV) is increasingly used in children with life-limiting conditions (LLCs) to treat their…

Parent Narratives Provide Perspectives on the Experience of Care in Trisomy 18

Trisomy 18 syndrome, also known as Edwards syndrome, is the second most common autosomal chromosome syndrome after Down syndrome. Trisomy 18 is a serious medical disorder due to the increased occurrence of structural defects, the high neonatal and…

Intrathecal baclofen therapy as treatment for spasticity and dystonia: Review of cases in a pediatric palliative care unit

Introduction: Patients managed in the Pediatric Palliative Care Integral Unit (PPCIU) have serious neurological conditions that involve significant damage at central nervous system level. The movement disorder is a very common clinical problem and…

Tags: 2024, Adolescent, Adult, Alba RM, alert, antibiotic agent/dt [Drug Therapy], antibiotic agent/iv [Intravenous Drug Administration], Article, Baclofen/dt [drug Therapy], baclofen/po [Oral Drug Administration], baclofen/pv [Special Situation for Pharmacovigilance], baclofen/tl [Intrathecal Drug Administration], benzodiazepine derivative/dt [Drug Therapy], benzodiazepine derivative/po [Oral Drug Administration], benzodiazepine derivative/pv [Special Situation for Pharmacovigilance], botulinum toxin/dt [Drug Therapy], Brain Damage, catheter, Cerebral Palsy, Child, Clinical Article, clobazam/dt [Drug Therapy], clonazepam/dt [Drug Therapy], Congenital Malformation, continuous infusion, de Noriega Echevarria I, Descriptive Research, diazepam/dt [Drug Therapy], disease classification, drug dose increase, drug dose reduction, dystonia/dt [Drug Therapy], enzyme deficiency, Errasti VI, Female, glutaric aciduria, glutaric aciduria type 1, Gross Motor Function Measure, Human, implantation, intrathecal baclofen pump/am [Adverse Device Effect], intrathecal pump, Male, medical device malfunction/co [Complication], meningitis/dt [Drug Therapy], nerve degeneration, Neurologia, November List 2024, Palliative Therapy, pantothenate kinase/ec [Endogenous Compound], Pediatrics, Perez MMA, poly malformative syndrome, Preschool Child, Puertas MV, reservoir, Retrospective Study, School Child, spasticity/dt [Drug Therapy], STATA v16.0, Syndrome, tizanidine/dt [Drug Therapy], tizanidine/po [Oral Drug Administration], tizanidine/pv [Special Situation for Pharmacovigilance], trihexyphenidyl/dt [Drug Therapy], trihexyphenidyl/po [Oral Drug Administration], trihexyphenidyl/pv [Special Situation for Pharmacovigilance], Young Adult

Listen to our voice!' using co-creation and art-based methods to explore the welfare and wellbeing of siblings of children with life-limiting conditions

Sibling of children with a life-limiting condition (LLC) face challenge. Yet there is relatively little research specifically investigating the psychosocial impact on siblings living with a child with an LLC. A qualitative participatory methodology…

The Practical Application of the Individual Care Plan for Pediatric Palliative Care: A Mixed-Method Study

Background/Objective: The Individual Care Plan (ICP) for pediatric palliative care was developed to provide person-centered care for the individual child and family. Currently, a lack of clarity remains regarding the use and function of the ICP in…

CARING FOR DYING CHILDREN: EXPERIENCES OF FAMILY CAREGIVERS OF CHILDREN RECEIVING PEDIATRIC PALLIATIVE TREATMENT

INTRODUCTION: Caring for children living with life-threatening and life-limiting illnesses can be challenging for families. Parents' roles as primary caregivers can be complex, with extensive responsibilities. METHOD(S): A mixed-design study was…

Nurses' Perspectives Regarding Challenges of Providing Perinatal/Neonatal End-of-Life Care in a Regional Hospital: An Exploratory Qualitative Study

AIM: This qualitative study aimed to explore nurses' perspectives regarding the challenges of providing perinatal/neonatal end-of-life care in a regional hospital. METHOD(S): This exploratory qualitative study was conducted with 20 nurses working in…

Pediatric Perspectives on Palliative Care in the Neurocritical Care Unit

Pediatric neurocritical care teams care for patients and families facing the potential for significant neurologic impairment and high mortality. Such admissions are often marked by significant prognostic uncertainty, high levels of parental emotional…

Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit

Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences. Objective(s): To examine sources of and changes in stress among…

Tags: 2024, Adolescent, Adult, Article, Barton KS, Bogetz J, brain ventricle peritoneum shunt, Child, Child Parent Relation, Clinical Article, Cohort Analysis, confusion (uncertainty), Controlled Study, Disease Severity, ethnic background, Father, feeding tube, Female, Health Survey, Home Care, Hospital Admission, hospital discharge, Human, implanted vagus nerve stimulator, intrathecal baclofen pump, Journal of Palliative Medicine, legal guardian, Length Of Stay, Life Expectancy, Male, mortality risk, Neurodisability, noninvasive positive pressure ventilation, October List 2024, Oslin E, Palliative Therapy, Parental Stress, Patient Advocacy, Pediatric Hospital, Pediatric Intensive Care Unit, Personal Experience, Prospective Study, Qualitative Research, Quantitative Study, Rosenberg AR, Semi Structured Interview, Tracheostomy, Trowbridge A, United States, VULNERABILITY, Watson RS, Yi-Frazier J

Voices of experience: insights from Dutch parents on periviability guidelines and personalisation

OBJECTIVE: To investigate the perspectives of experienced parents regarding guidelines and personalisation for managing imminent extremely premature births (22-26 weeks gestational age (GA)) . The study examined four scenarios: no guideline, a…

Why Are we Giving up on my Brother?-The Unmet Needs of the Adolescent Facing End-of-Life Care in a Sibling

Adolescence is a challenging time at baseline, and a sibling receiving end-of-life care can alter an adolescent's life irrevocably. It is imperative for the medical team to understand the unique needs and perspectives of such an adolescent sibling.…

Non-invasive respiratory support in children and young adults with complex medical conditions in pediatric palliative care

Objective: Dyspnoea and sleep-disordered breathing (SDB) are common in children with life-limiting conditions but studies on treatment with non-invasive ventilation (NIV) or continuous positive airway pressure (CPAP) are scarce. The aim of the study…

The spiritual dimension of parents' experiences caring for a seriously ill child: an interview study

Background: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these…

Grasping the meaning of perinatal palliative care for the multiprofessional team

Objective: To grasp the meaning of perinatal palliative care for the multidisciplinary team. Methods: This is a qualitative study guided by content analysis. The study included 56 health professionals working in maternal and child units of a public…

A Review of pediatric Palliative Care Program in a Regional Hospital in ong Kong

Background Paediatric palliative care (PPC) focuses on the enhancement of quality of life for children with life-limiting diseases and support to their families. This study reviewed the paediatric palliative care program in Hong Kong (HK). Objectives…

What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders

Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is…

The Use of Cannabinoids in Pediatric Palliative Care-A Retrospective Single-Center Analysis

This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized…

The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care

In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are…

Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions

Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other…

Survival, short-term morbidity of extremely low gestational age infants and their predictors

BACKGROUND: Despite advances in neonatal care for extremely low gestational age (ELGA) infants, they experience high rates of mortality and morbidity. Local data on survival, predictors, and outcomes of ELGA infants is crucial in order to provide…

How to move forward in shared decision-making in pediatric palliative care

Pediatric palliative care has grown immensely in recent years in the world. However, shared decision-making remains a complex process, especially in pediatric palliative care. In particular, a number of issues are priorities to improve the shared…

Tags: 2024, Adolescent, April List 2024, Aris-Meijer JL, Article, Child, Clinical Article, Current Problems in Pediatric and Adolescent Health Care, Decision Making, Human, Infant, Joren CY, Lantos J, Palliative Care, Palliative Therapy, shared decision making, special situation for pharmacovigilance, Therapy, Verhagen AAE

Qualitative Study of Nurses' Experiences as They Learned to Provide Neonatal Palliative Care

Objective: To describe the experiences of nurses as they learned to provide palliative care in the NICU. Design: Interpretive description. Setting: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers.…

Parents' experiences of palliative care decision-making in neonatal intensive care units: An interpretative phenomenological analysis

Aim: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. Methods: Audio-recorded face-to-face interviews were…

Shared decision-making in pediatric palliative care in the Netherlands

Shared decision-making (SDM) is a process in which health care professionals (HCPs) involve parents and children - when appropriate- to decide together on future treatment. These decisions are based on values that are important for the family, goals…

Evaluating quality of life in pediatric palliative care: a cross-sectional analysis of children's and parents' perspectives

The patient's perspective is an essential component of understanding the individual experience of suffering in children with palliative needs, but it is a perspective that is often overlooked. The aim of this study was to compare the perception of…

A psychological experience assessment protocol of parent caregivers in paediatric palliative care

Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the…

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…

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