Browse Items · Pediatric Palliative Care Library

Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model

When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into…

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…

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…

Characteristics of adolescent and young adult patients with cancer receiving home-based palliative care: A retrospective study at a single center

PURPOSE: Adolescents and young adults (AYA) with cancer require highly individualized, age-specific end-of-life care. This study identified the characteristics of AYA patients with cancer receiving home-based palliative care and explored their unique…

What Are the Psychosocial Needs of Adolescents and Young Adults with Cancer? A Systematic Review of the Literature

Adolescents and young adults with cancer (AYACs) have become recognized as a unique group in recent years. The unique developmental context and related challenges of being a young person with a cancer diagnosis can lead to a distinct and diverse set…

Tags: 2023, 2025 SE1 - Oncology, administrative health data, Adolescent, Adult, Analgesia, Anticipation, Body Image, cancer center, Cancer Chemotherapy, Cancer Diagnosis, Cancer Palliative Therapy, Cancer Patient, Cancer Prognosis, cancer radiotherapy, Cancer Therapy, Checklist, Childhood Cancer, Chinese Version of the Medical Coping Mode Questionnaire, clinical assessment, clinical evaluation, Condren C, Coping, Data Base, data extraction, Demographics, Depression, Depression Anxiety and Stress Scale-21, developmental stage, Disease Burden, Disease Severity, Distress Syndrome, Dying, Edmonton Classification System of Cancer Pain, emotional support, Fatigue, Female, financial management, Follow Up, Gender Identity, Guerin S, Health Care, Health Personnel Attitude, Hematologic Malignancy, Hospital Anxiety and Depression Scale, Human, illness trajectory, Journal Of Adolescent And Young Adult Oncology, Looney K, Male, malignant neoplasm/rt [Radiotherapy], Mental Health, mood change, Neylon K, occupation, Oncology, Patient Autonomy, Patient Referral, patient-reported outcome, Pediatric Quality of Life Inventory, Personal Experience, Population, Prevalence, program appropriateness, Prospective Study, Psycho-Oncology, psychological aspect, psychosocial care, Psychosocial Intervention, Qualitative Analysis, Qualitative Research, quantitative analysis, Questionnaire, Review, Self Report, Semi Structured Interview, sexual health, Short Form 12, Side Effect, social needs, Social Support, Social Support Rating Scale, Social Worker, solid tumor, Study Design, Symptom, Systematic Review, Terminal Care, Thematic Analysis, unmet medical need, Western Australia, workshop, Young Adult

A Pilot of a Telehealth-Hospice Transition Intervention for Children and Young Adults with Cancer

Background and aims: Telehealth can improve care for patients with progressive cancer enrolling in hospice. Coordinated telehealth visits (patient/family-hospital-hospice) may improve communication, satisfaction with and interdisciplinary hospice…

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 (

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…

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…

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…

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

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…

The Psychiatric Care of Children and Young Adults With Neurodegenerative Diseases

Pediatric neurodegenerative disorders (PNDs), such as juvenile neuronal ceroid lipofuscinosis (CLN3 disease, also called Batten disease) and juvenile Huntington disease, are devastating conditions that result in progressive neurological dysfunction…

Tags: 2024, Adolescence, Aggression, Agitation, antiemetic agent/pv [Special Situation for Pharmacovigilance], anxiety disorder, apathy, appetite stimulant/pv [Special Situation for Pharmacovigilance], Augustine EF, automutilation, Behavior Therapy, body weight gain, Brown HB, Caregiver Burden, Child Psychiatry, Childhood Mortality, choreoathetosis/dt [Drug Therapy], cognitive defect/si [Side Effect], collaborative care team, Comorbidity, degenerative disease/dm [Disease Management], degenerative disease/dt [Drug Therapy], Dementia, disease exacerbation, Dysphagia, Editorial, Expectation, extrapyramidal symptom, February List 2025, feeding disorder, feeding tube, first-line treatment, gabapentin/dt [Drug Therapy], gabapentin/pv [Special Situation for Pharmacovigilance], Hauptman AJ, high risk behavior, Human, Huntington chorea/dm [Disease Management], iatrogenic disease/si [Side Effect], Interpersonal Communication, Irritability, Journal Of The American Academy Of Child And Adolescent Psychiatry, juvenile neuronal ceroid lipofuscinosis/dm [Disease Management], Lafora disease, Live Birth, Medication therapy management, mental health care, mirtazapine/pv [Special Situation for Pharmacovigilance], mood disorder, motor dysfunction, neuroleptic agent/ae [Adverse Drug Reaction], neurologic disease/dm [Disease Management], neuropsychiatry, obsession, onset age, Palliative Therapy, parenting education, parkinsonism, Patient Care, Patient Comfort, pediatric patient, perseveration, Polypharmacy, Prevalence, Prognosis, psychiatric neuropalliative care, psychoeducation, psychosis, Quality Of Life, quetiapine/dt [Drug Therapy], quetiapine/pv [Special Situation for Pharmacovigilance], responsibility, risperidone/dt [Drug Therapy], risperidone/pv [Special Situation for Pharmacovigilance], Seizure, sensory dysfunction, Side Effect, sleep disorder, Spasticity, Symptom, symptom burden, tardive dyskinesia/si [Side Effect], Tay Sachs disease, trazodone/dt [Drug Therapy], trazodone/pv [Special Situation for Pharmacovigilance], visual impairment, Young Adult

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

A Nationwide Study to Evaluate Accessibility to Specialized Pediatric Palliative Care in Italy-Patients, Needs, and Critical Issues: The PalliPed Study

Background: PalliPed is the first Italian nationwide project aimed at describing the characteristics of patients accessing specialized pediatric palliative care (PPC) and their families, in the main care settings (hospice, home care, and hospital).…

Tags: 2024, Adolescent, Agosto C, Albanesi B, Amarri S, Article, Avagnina I, Barbugian E, Basile R, Bellagamba O, Bellini F, Beltrami C, Benini F, Bignamini E, Bolognani M, Campagna M, Carraro C, Catalano G, Catalano I, Celentano L, Child, Controlled Study, De Marinis MG, De Tommasi V, De Zen L, Di Nunzio S, Diagnosis, Divisic A, Dolcini A, family support, Fasson A, Franchi F, Ghiraldo G, Giacomelli L, Grigolon E, Health Care Personnel, Home Care, Human, Iadelica A, Infant, Italy, Journal of Palliative Medicine, Lazzarin P, Maghini I, Manfredini L, Marinetto A, Maternal care, Mazzoni E, Mercante A, Michelotto E, Mirone R, Molinaro G, Moliterni P, Moro N, October List 2024, Orofino R, Palliative Therapy, Paone G, Papa S, Patient Referral, Pediatrician, Pellegatta F, Peruselli C, Piccolruaz UV, Prenatal Care, Raspi M, Roverato B, Salata M, Santini A, Schiavon B, Soffritti S, Taucar V, terminal disease, Thaler M, Therapy, Tornesello A, Uez F, Vaccher S, Vezzoli C, Young Adult, Zanin A, Ziggiotto S

PAEDIATRIC TO ADULT PALLIATIVE CARE - IS THERE A PRESCRIPTION FOR TRANSITION?

Objectives The number of children in the UK living with a life-limiting condition is rising year-on-year.1 The average life expectancy associated with many of these conditions also continues to increase and, consequently, more children are surviving…

Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review

Background: The prevalence of complex chronic conditions (CCC), which cause serious limitations and require specialized care, is increasing. The diagnosis of a CCC is a health-illness transition for children and their parents, representing a…

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…

Feasibility of a Serious Illness Communication Program for Pediatric Advance Care Planning

Importance: Pediatric advance care planning (ACP), which aims to ensure care is aligned with family goals and values, is associated with better end-of-life outcomes; however, ACP in pediatrics remains uncommon. Objectives: To determine the…

The impact of specialized pediatric palliative care on advance care planning and healthcare utilization in children and young adults: a retrospective analysis of medical records of in-hospital deaths

Background: Pediatric palliative care supports children and young adults with life-limiting conditions and their families, seeking to minimize suffering and enhance quality of life. This study evaluates the impact of specialized palliative care (SPC)…

Development of Specialty-Based Pediatric Palliative Care Clinics

Outcomes: 1. Utilizing a case-based approach, participants will be able to identify three different models to develop pediatric palliative care clinics. 2. Utilizing the examples and framework from this presentation, participants will be able to…

National characteristics of emergency care for children with neurologic complex chronic conditions

Abstract Introduction: Most pediatric emergency care occurs in general emergency departments (GED), where less pediatric experience and lower pediatric emergency readiness may compromise care. Medically vulnerable pediatric patients, such as those…

Psychiatry and interdisciplinary pediatric palliative care: a scoping review

BACKGROUND: Current literature highlights the need for psychological support of adolescents and young adults (AYAs) with serious illness, for which pediatric palliative care (PPC) teams are often responsible. This scoping review aims to inventory the…

Tags: 2024, Adolescent, adolescents and young adults (AYAs), Advance Care Planning, Annals Of Palliative Medicine, Child, Cress AE, Humans, Interdisciplinary palliative care (interdisciplinary PC), May List 2024, Medical Oncology, Neoplasmspsychology, Palliative Care, Palliative Caremethods, Pediatric Palliative Care (ppc), Psychiatry, Psychology, Young Adult

Investigation of the impact of paediatric hospices on the quality of care of paediatric nurses

BACKGROUND: The establishment of paediatric hospices improves the quality of care of paediatric nurses. AIM: To examine the effect of establishing paediatric hospices on the quality of care of paediatric nurses. METHOD(S): Data was collected between…

Tags: 2024, Adult, April List 2024, Bor NA, Child, Female, Hayli CM, Hospice, Hospice Care, Hospices, Human, International Journal of Palliative Nursing, Kosem DD, Male, Nurse, pediatric nurse, Pediatric Nursing, Questionnaire, Young Adult

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

Shutting the World Out': An Interpretative Phenomenological Analysis Exploring the Paternal Experience of Parenting a Young Adult with a Developmental Disability.

BACKGROUND: An in-depth exploration of the experience of midlife fathers of developmentally disabled young adults (aged 19-32 years) was motivated by a dearth of research in this area (McKnight, PsyPAG Quarterly, 94, 2015, 10)., METHOD: Five fathers…

Tags: *Adult Children, *Developmental Disabilities, *Fathers/px [Psychology], *Parenting/px [Psychology], 2018, 2023 SE4 - Parent Perspectives, Adult, Eatough, Virginia, Humans, Journal Of Applied Research In Intellectual Disabilities, Male, Middle Aged, Qualitative Research, Thackeray, Lisa A, Young Adult

"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions

BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known…

Sharing care at the End of life for adolescent patients with neuro-disability: A case series

Background Adolescents with long term conditions are recognised to have unique needs and to experience particular health risks as they transfer to adult services. Some young people with complex neuro-disability may live years following transfer to…

Are we on the same page? Exploring pediatric patients' involvement with advance care planning

[Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale]

INTRODUCTION: The Pediatric Palliative Screening Scale (PaPaS Scale) was designed to help professionals to identify life-limiting or life-threatening children/young people with complex chronic conditions who would benefit from pediatric palliative…

Tags: 2023, Acta Médica Portuguesa, Adolescent, Child, Chronic Disease, Humans, July List 2023, Machado MdC, Needs Assessment, Portugal, Psychometrics, Reproducibility of Results, Simoes MJP, Surveys And Questionnaires, Tavares F, Translations, Young Adult

Evaluating a novel hospital-based online health community to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients

OBJECTIVES: Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack…

Shared Spiritual Beliefs between Adolescents with Cancer and Their Families

BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology…

The Marital Implications of Bereavement: Child Death and Intimate Partner Violence in West and Central Africa

In high-mortality contexts, research examining the effects of child mortality has focused almost exclusively on couples' fertility responses while overlooking other potential family consequences. Using nationally representative survey data from 13…

Sibling Mortality Burden in Low-Income Countries: A Descriptive Analysis of Sibling Death in Africa, Asia, and Latin America and the Caribbean

In high-income countries, emerging research suggests sibling bereavement can have significant health and life course consequences for young people. Yet, we know far less about its burden in lower-income countries. Due to higher fertility and…

Teetering On a Cliff Edge: Transitioning Between Paediatric and Adult Hospice Services

Background The transition process from paediatric to adult hospice care is uniquely challenging for young adults living with non-malignant life-limiting conditions as they are often declining in health with increasing dependence on their families for…

Transforming Care for Young Adults with Complex and Life-Limiting Conditions

Background More young people with complex life-limiting conditions are living into adulthood, generating greater demand for appropriate care (Fraser, Gibson-Smith, Jarvis, et al., 2021. Palliat Med. 35:1641). We implemented Project ECHO (Extension of…

Tags: 2022, Adult, BMJ Supportive and Palliative Care, Child, conference abstract, Horsley A, Human, immersion, James C, Learning, Logic, March List 2023, Peer Group, quantitative analysis, Shouls S, Young Adult

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