Browse Items · Pediatric Palliative Care Library

Children's and adolescents' perspectives on living with advanced cancer: A meta-synthesis of qualitative research

Bereaved parent preferences on quality end-of-life care for children with cancer in the South

Purpose: The authors sought to understand bereaved family preferences for end-of-life (EOL) care, particularly among Black families and those in the South. Method(s): Semi-structured interviews were conducted with parents of children who died of…

Experiences with a national team-based learning program for advance care planning in pediatric palliative care

Background: Advance Care Planning (ACP) enables patients and relatives to define and share values, goals and preferences for future medical treatment and care. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT), developed in the…

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

Parent-Clinician Communication and Prolonged Grief in Parents Whose Child Died from Cancer

CONTEXT: Parent-clinician communication is essential for high-quality end-of-life (EOL) care in children with cancer. However, it is unknown how parent-clinician communication affects parents' experience in the first two years after their child's…

Storytelling to support legacy making for bereaved parents of children with cancer

Honoring a child's legacy is an essential aspect of meaning-making for bereaved parents, yet little is known about storytelling as a mechanism. Through narrative analysis of 19 bereaved parent interviews focused on legacy, we examined the role of…

Utilizing the Metaverse to Provide Innovative Psychosocial Support for Pediatric, Adolescent, and Young Adult Patients with Rare Cancer

This study investigated the potential of the metaverse in providing psychological support for pediatric and AYA cancer patients, with a focus on those with rare cancers. The research involved ten cancer patients and survivors from four distinct…

Parental Attitudes Towards Palliative Care in Pediatric Oncology: Insights from Bereaved Families

CONTEXT: Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. Nevertheless, there are concerns that PC is underutilized in pediatric oncology. Understanding parental attitudes…

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

Mixed-method examination of factors associated with adolescent decision-making and involvement in care in the context of advanced cancer

OBJECTIVES: Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors…

Access to legacy-oriented interventions at end of life for pediatric oncology patients: A decedent cohort review

Background: Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known…

Cannabinoids for symptom management in children with cancer: A systematic review and meta-analysis

Background: Despite the widespread use of medical cannabis, little is known regarding the safety, efficacy, and dosing of cannabis products in children with cancer. The objective of this study was to systematically appraise the existing published…

Development and Validation of a Ready-to-Talk Measure for Use in Adolescents and Young Adults Living With Advanced Cancer

Background: In the era of evolving and emerging therapies, adolescents and young adults (AYAs) living with advanced cancer experience a high degree of uncertainty, making palliative care and end-of-life (PCEOL) discussions difficult. Clinical…

Mixed-methods evaluation of a face-to-face educational intervention for health and social care professionals to deliver family-centred cancer supportive care when a parent with dependent children is at end of life

Objective: To deliver and evaluate an educational intervention to equip health and social care professionals (professionals) on how best to support parents at end of life with cancer concerning their dependent children (

Paediatric oncologists' perspectives on Strategic solutions to develop Integrated Cancer Palliative Care: feedback intervention theory as an explanatory Framework

Background Globally, children with cancer often experience delays in palliative care referral or are infrequently referred. Therefore, we conducted a qualitative study to gain insight from paediatric oncologists into what enables or deters palliative…

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 Impact of Qualification and Hospice Education on Staff Attitudes during Palliative Care in Pediatric Oncology Wards-A National Survey

Background: Our knowledge about the attitudes of healthcare staff to palliative care in pediatric oncology is scarce. We aimed to assess their perceptions of palliative care in Hungary and find answers to the question of how to provide good…

The Pediatric Palliative Care Quality Network: Palliative Care Consultation and Patient Outcomes

Background and objectives: Quality benchmarking in pediatric palliative care (PPC) helps identify gaps in care and guides quality improvement. Our study objective was to characterize inpatient PPC referral processes, interdisciplinary PPC delivery,…

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,…

Use of Cancer-Directed therapy at the end of life among adolescents and young adults

Background: Adolescents and young adults frequently receive chemotherapy near death. We know less about the use of targeted agents and immunotherapy or trends over time. Methods: We conducted a retrospective cohort study of 1836 adolescents and young…

Nurturing hope: pioneering paediatric palliative care in Pakistan

My colleagues often say that seeing me (Resham) standing beside a patient's bed or lingering outside a child's room feels like a sign that the malik-ul-maut, or the angel of death, is near. For a long time, most health-care professionals perceived my…

Tags: 2024, 2025 SE2 - LRS, Altaf S, Article, Child, Human, Lancet Child and Adolescent Health, Pakistan, Palliative Therapy, Qamar J, Resham S

Brazilian Physicians' Attitudes and Feelings Towards Palliative Care in Pediatrics

The aim of the article is to evaluate and understand the feelings and attitudes of Brazilian physicians regarding the implementation of palliative care in pediatric patients. Between July 2018 and December 2019, 236 questionnaires were sent to…

Physician Perceptions of and Barriers to Pediatric Palliative Care for Children with Cancer in Brazil

PURPOSEEarly integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding physician perceptions of palliative care and perceived barriers to early…

Tags: 2023, 2025 SE2 - LRS, Adult, Agulnik A, Antunes Geronutti Ayub D, Article, Baker JN, Beatriz Costa Neves Do Amaral A, Bereavement, Boldrini E, Brazil, Cancer Palliative Therapy, Child, Childhood Cancer, clinical assessment, Consultation, Cristina Cunha Ferreira EFonseca I, De Oliveira Junior A, Devidas M, emotional support, Esmeraldo Andrade De Almeida A, Female, Francisco Oliveira De Lima A, Friedrich P, Godfrey A, Grief, Health Care Access, health care need, Health Education, Health Survey, Home Care, Human, JCO Global Oncology, Job G, Loggetto P, Lopes Garcia J, Male, McNeil MJ, Medical Expert, Metzger ML, Pediatric Palliative Care, Pediatrics, physical activity, Physician, Physician Attitude, professional knowledge, Qualitative Analysis, Quality Of Life, Regina Costa Murra G, Spiritual Care, World Health Organization

Clinical and socio-demographic profile of children receiving pediatric palliative care in a tertiary hospital of a metropolitan city in India

Pediatric palliative care is a holistic care of children suffering from life-threatening or life-limiting illnesses and encompasses care of a child's body, mind, and spirit and involves giving support to the family. According to the Global Atlas of…

End-of-life care in neonatal intensive care units in Iberoamerica: A look from the nursing perspective

Introduction: End-of-life care (ELC) represents a quality milestone in neonatal intensive care units (NICU). The objective of this study was to explore how ELC are carried out in NICUs in Iberoamerica. Methods: Cross-sectional study, through the…

Cross-sectional study of the perceived well-being of children in palliative care

Abstract Objective: To describe the perceived wellbeing (pWB) and the psychological characteristics of young people with life-limiting and life-threatening conditions (LLTCs). Methods: We conducted a cross-sectional study in young people aged 8 years…

Biography Writing in the Pediatric Palliative Care Context: Review and Feasibility Data

Abstract Background: Biography writing services are increasingly being used with adult palliative care patients, helping them document their stories in a way that provides meaning for themselves, family, and friends. However, the feasibility of…

Tags: 2025, Adolescent, Adult, Article, Child, Children, Controlled Study, Coombs S, Family Stress, Female, Human, Jaaniste T, Male, March List 2025, Palliative Therapy, Pilot Study, Potter S, Thematic Analysis, Therapy, Volunteer

Palliative Care Outcomes for Critically ill Children After Rapid Whole Genome Sequencing

Abstract Objectives: Clinical utility of rapid whole genome sequencing (rWGS) has been reported in 30-70% of pediatric ICU patients who receive a molecular diagnosis. Rapid molecular diagnostic techniques have been increasingly integrated into…

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…

A Rapid Review on Shared Decision Making in Pediatric Palliative Care and End-of-Life Care: Implications for Clinical Practice, Research, and Policy

Abstract Shared decision making is a concept essential to establishing meaningful goals of care that reflect one's preferences, values, beliefs, culture, and quality of life. This rapid review considered shared decision making from the perspective of…

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…

"Who Has the Relationship?": Caring for a Shared Population of Children with Medical Complexity

Background: Many academic pediatric centers care for children with medical complexity (CMC) through established complex care and palliative care programs. There are little prior data investigating best practices for collaboration between these two…

Beyond treatment: Understanding family experiences in pediatric palliative care

OBJECTIVES: This study aimed to explore the multifaceted experiences of families with children and adolescents enrolled in the pediatric palliative care (PPC) program, with a particular emphasis on understanding their perspectives regarding the…

Exploring the experiences of children's palliative care for forced migrant families in the United Kingdom: an interpretative phenomenological study

Introduction: This study focused on understanding the experiences of forced migrant families and the health care professionals who care for them within palliative care. Palliative care for children requires an active, holistic approach to care, with…

Advancing Advance Care Planning: Evaluating a Revised Version of Voicing My CHOiCES

Introduction: Voicing My CHOiCES (VMC) is an advance care planning (ACP) guide designed to assist adolescents and young adults (AYAs) with serious illness in communicating their care preferences to others. This study evaluated a revised version of…

Prevalence of pain in the last 2 weeks of life in hospitalized pediatric patients

Abstract Introduction: Pain is a very common symptom in children who have a complex, chronic, life-threatening or life-limiting disease, generating a negative impact on the quality of life of the child and his or her family. There is very limited…

The effect of musical-animated toys and audiobooks on fear and pain in the tracheostomy care of children in the palliative care

Abstract Objective: The study aimed to evaluate the effects of musical-animated toys and audiobooks on the fear and pain in the tracheostomy care of children in the palliative care clinic. Methods: The study design was a single-center, single-arm,…

"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

Browse Items (460 total)