Browse Items · Pediatric Palliative Care Library

Impact of parental involvement in life-support decisions: A qualitative analysis of parents' adjustment following their critically ill child's death

A retrospective, qualitative, preliminary study examined if parental involvement in a life-support withdrawal (LSW) decision impacts the perceptions and adjustment of parents whose child died in a pediatric critical care unit. Participants were…

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…

PACOPED QL: Development and evaluation of the quality-of-life scale for children with life-Threatening illnesses

Objectives This study aims to validate the Palliative and Complex Chronic Pediatric Patients QoL Inventory (PACOPED QL), a new quality-of-life (QoL) assessment tool for pediatric palliative patients with complex chronic conditions. The goal is to…

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…

Nurses' knowledge of paediatric palliative care in a children's hospital

BACKGROUND: Effective training of health professionals is essential to end-of-life care. AIMS: To explore the level of knowledge on paediatric palliative care (PPC) of nurses in a children's monographic hospital. METHOD(S): Cross-sectional…

The critical role of education in shaping nurses' attitudes and intentions towards neonatal palliative care: A network analysis

Abstract Background Neonatal palliative care is an essential component of comprehensive neonatal care; however, its implementation remains challenging worldwide, particularly in low- and middle-income countries due to limited resources, cultural…

Complications and benefits of enteral feeding in children with progressive neurological disease in a palliative care service: a retrospective study

Abstract Palliative care for children with neurological conditions is essential to improve their quality of life and that of their family, given their uncontrollable symptoms and associated disabilities. These conditions include genetic diseases,…

Tags: 2024, Adolescent, Child, Child Preschool, Duceac LD, Duceac M, Enteral Nutrition, Female, Hizanu M, Humans, Infant, Journal of Medicine and Life, Male, March List 2025, Nervous System Diseases, Nervous System Diseases/et [Etiology], Palliative Care, Quality Of Life, Retrospective Studies

Perceived barriers to paediatric palliative care in a Palestinian children's hospital

Abstract Background: This study aimed to identify barriers to paediatric palliative care provision at one Palestinian paediatric hospital, elucidate reasons for the barriers, provide recommendations for enhancing care and identify topics for future…

Tags: 2025, Adult, Arabs, Attitude Of Health Personnel, Child, Cross-sectional Studies, Female, Ghareeb G, Health Services Accessibility, Hospitals Pediatric, Humans, International Journal of Palliative Nursing, Kelly D, Male, March List 2025, Middle Aged, Palliative Care, Qualitative Research, Surveys And Questionnaires

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…

"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…

Holistic Nursing Care for Perinatal Loss Based on Swanson's Theory of Caring

Abstract Purpose: The purpose of this study was to inform perinatal loss care by expanding upon the five processes of Swanson's Theory of Caring through a holistic lens. Study design and methods: This study was a qualitative content analysis of 34…

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,…

Impact of disability-based discrimination in healthcare on parents of children with medical complexity.

AIM: To qualitatively assess the impact of disability-based discrimination in healthcare on the parents of children with medical complexity (CMC)., METHOD: In this qualitative study, we conducted in-depth, semi-structured interviews with the parents…

"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…

DMD-YOUNG: paediatric palliative care for children with a slowly progressive neuromuscular disorder in transition to adulthood

Duchenne muscular dystrophy (DMD) is a severe genetic neuromuscular disease that causes progressive loss of muscle function. As life expectancy in DMD has gradually increased to a current median of 21-39 years, the disease serves as an example of…

The Effect on the Care Behaviors of Nurses Working in Intensive Care Clinics of Moral Distress Experienced During End of Life Patient Care

This research was conducted as a descriptive study in order to examine the effects of the moral problems experienced by nurses working in intensive care clinics on their end of life care behaviors. The data were collected using the Moral Distress…

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…

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

Suffering in children and adolescents in paediatric palliative care in Spain: psychometric properties of the qESNA scale

Objective: To analyze the psychometric properties of the qESNA scale and its usefulness to assess the suffering of paediatric patients with life-limiting and/or life-threatening diseases (children with LLTC) in clinical practice. Methods:…

The purpose of an individual care plan in pediatric palliative care according to healthcare professionals: a qualitative study

Background: To ensure high-quality pediatric palliative care (PPC) and enable healthcare professionals (HCPs) to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their family, the Individual…

The usage of family audiobooks as a legacy for grieving children - an exploratory quantitative analysis among terminally ill parents and close persons

Background: Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice.…

When a Child Dies: Racialized Father's Experiences of Objectification During Hospital Care

Understanding the meaning of loss for racialized immigrant fathers and addressing their experiences in a culturally competent manner is important in an increasingly ethnoculturally diverse country like Canada. Culture, customs and rituals influence…

Nurses' beliefs in the care of newborns at the end of life in the neonatal intensive care unit

Objective: To describe nurses' beliefs and attitudes related to care during the end-of-life process and death in a neonatal intensive care unit. Method: Descriptive and qualitative study with nurses working in a neonatal intensive care unit who…

Goals of Surgical Interventions in Youths Receiving Palliative Care

Importance: Most youths receiving palliative care undergo many surgical interventions over their lifetimes. The intended purposes of interventions in the context of goals of care are not commonly articulated. Objective: To describe the goals and…

Tags: 2024, adenoidectomy, Article, Assistive technology, Avery M, bone marrow aspiration, bone marrow biopsy, botulinum toxin/pv [Special Situation for Pharmacovigilance], bronchoscopy, Cancer Patient, cancer surgery, Cardiovascular Disease, central venous catheterization, cerebrospinal fluid shunting, Chemotherapy, Chen L, Child, Cohort Analysis, Controlled Study, dental procedure, Ellis DI, endoscopic biopsy, Endoscopy, February List 2025, Female, Genetic Disorder, Gordon Wexler S, heart catheterization, heart surgery, Human, JAMA Network Open, juvenile, Kaplan AJ, Kelleher C, Kim TD, laryngoscopy, life extension, lumbar puncture, Major Clinical Study, Male, Mazzola E, Neurologic Disease, Palliative Therapy, Patient Care, pediatric patient, pediatric surgery, phenol/pv [Special Situation for Pharmacovigilance], Retrospective Study, steroid therapy, steroid/pv [Special Situation for Pharmacovigilance], tenotomy, thorax surgery, Tonsillectomy, Tracheostomy, treatment indication, tympanostomy, Vascular Surgery, Wolfe J

Pediatric Palliative Care Simulation Improves Resident Learning Outcomes: an 11-Year Review

Context: Many general pediatrics residents lack sufficient opportunities to conduct difficult conversations with families, particularly about end-of-life care. Simulation learning is an effective means of practicing professional skills. A pediatric…

Certified Child Life Specialists in Hospice and Palliative Care Organizations: A State of the Profession

Background: Certified Child Life Specialists (CCLSs) provide developmentally appropriate psychosocial care to children to promote positive coping. However, little is known about the current professional landscape and opportunities for professional…

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…

Influence of the functional intervention on the development of essential social skills in children with life-limiting conditions

Life-limiting conditions often cause children to be overlooked as participants in everyday activities. For parents child development should lead to independence in daily living activity. For parents of children who are disabled, independence is a…

Tags: 2024, Child, Child Development, daily life activity, Demczuk-Wlodarczyk E, Disabled child, February List 2025, Female, Human, Male, Preschool Child, Ptak A, Quality Of Life, Rehabilitation, Scientific reports, social competence, Stefanska M

Effect of timing of palliative care consultation on end-of-life care for children with advanced cardiac disease

Background: Pediatric patients with advanced cardiac disease often receive high intensity medical care at the end of life (EOL). Specialized pediatric palliative care (PPC) has been shown to improve symptom management and EOL goal-concordant care,…

Bereavement care guidelines used in health care facilities immediately following perinatal loss: a scoping review

OBJECTIVE: The objective of the scoping review was to explore the evidence and describe what is known about perinatal bereavement care guidelines provided within health care facilities prior to discharge. Additionally, the review sought to identify…

Tags: 2024, Bereavement, February List 2025, Female, Humans, JBI Evidence Synthesis, Male, Mental Health, Nick JM, Parents/psychology, Perinatal Death, Peters J, Practice Guidelines As Topic, Roberts LR, Sarpy NL, Stillbirth/psychology, Tamares S

Of course you crash' Parenting a young child with neurodevelopmental difficulties.

BACKGROUND: Parents of children with neurodevelopmental disorders often experience heightened levels of parenting stress and diminished well-being. However, less is known about the well-being of parents whose children exhibit symptoms of…

Parent perspectives on education to support hospital discharge for children with invasive mechanical ventilation.

BACKGROUND: Children with invasive mechanical ventilation (IMV) often live at home, but for safety, parents must be prepared to assume primary responsibility for all aspects of their child's medically complex care. Prior studies have described…

Tags: 2024, Adult, Child, Child Preschool, February List 2025, Female, High MS, Humans, Journal of Pediatric Nursing, Lynch E, Male, Parents, Parents/ed [education], Parents/px [psychology], Patient Discharge, Patient Education as Topic, Qualitative Research, Respiration Artificial, Sobotka SA

Mothering a Child With Complexity and Rarity: A Narrative Inquiry Exploring Prader-Willi Syndrome.

Daily experiences of mothers caring for children with Prader-Willi syndrome (PWS) are largely unknown and unvoiced. Knowledge of PWS has generally focused on pathology of the disorder. This emphasis overlooks the challenging moments of everyday life…

Beyond the healthcare system: The societal and contextual factors impacting parents' participation in decision-making for neonates with life-threatening conditions

Background Parents of neonates with life-threatening conditions and professionals, bear the burden of making complex decisions. Parents may not be fully involved in decision-making, and there is a paucity of evidence regarding the influence of social…

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…

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