Browse Items · Pediatric Palliative Care Library

Family Caregivers of Children With Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination

OBJECTIVE: To examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL). METHODS: From July 2018 to July 2019, family…

Tags: 2020, 2024 SE2 - Parent Perspectives, Academic Pediatrics, Care coordination, caregiver emotional well-being, caregiver health-related quality of life, Caregivers, Child, Children With Medical Complexity, Cook S, Family, Henderson C, Humans, Quality Of Life, Ray K, Surveys And Questionnaires, Yu JA

The Experience of Parental Caregiving for Children With Medical Complexity

Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC…

Psychosocial factors affecting the quality of life of parents who have children with home mechanical ventilation

INTRODUCTION: Most children with medical complexity have to live with home mechanical ventilation (HMV). Undertaking the care of a child with HMV creates a psychosocial burden on parents. This study investigated the impact of selected potential…

Healthcare for children depend on medical technology and parental quality of life in Japan

BACKGROUND: The aim of this study was to explore and clarify the healthcare service utilization of children dependent on medical technology (CMT), and the parental health-related quality of life (HRQOL). METHODS: Participants recruited the primary…

Tags: 2022, 2024 SE2 - Parent Perspectives, Arai J, Caregivers, Child, Chronic Disease, Cross-sectional Studies, Disabled Children, Health Service, Hirasawa A, Humans, Japan/epidemiology, Matsuzawa A, Parents, Patient Acceptance of Health Care, Pediatrics International, Quality Of Life, Shiroki Y, Technology

Health and quality of life among the caregivers of children with disabilities: A review of literature

Families caring for children with disabilities face particular challenges and demands compared to those caring for children without disabilities. Evidence suggests that there is considerable variation in how caregivers of children with disabilities…

What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change

There is growing consensus that centering lived experience is needed to meaningfully transform the burdensome systems of care for children with medical complexity (CMC) and their families. The Collaborative Improvement and Innovation Network to…

Tags: 2024, 2024 SE2 - Parent Perspectives, Child, Coleman C, Comeau M, Communication, Consensus, Female, Houlihan BV, Humanism, Humans, Infant Newborn, Kuo DZ, Pediatrics, Perinatal Care, Plant B, Pregnancy, Quality Of Life

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

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

Quality-of-Life Assessment in Pediatric Advanced Cancer: Development of the Patient-Reported Outcome Measure Advance QoL

A recent measure was developed to assess the Quality of Life (QoL) of young people with advanced cancer and is available for parents and professionals (Advance QoL). The present study aimed to elaborate self-reported versions for children and…

Symptoms of advanced cancer in palliative medicine: a longitudinal study

Objectives: This study aimed to examine the symptomatology of patients with advanced cancer at admittance to palliative care services and to investigate how the symptomatology changed during the first month, and whether these changes were associated…

Assessment of knowledge, attitude, and practice and associated factors towards palliative care among health care providers to the pediatric oncology patients in southern Philippines

Background: Palliative care in the Philippines is categorized as 3A, considered to have localized hospice care provision; however, lack of education and awareness are dismal and accounted as the biggest challenges for the health care providers and…

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

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…

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

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…

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…

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…

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

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

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

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…

Evaluation of a perinatal palliative care program by SWOT analysis

Background: Perinatal Palliative Care (PPC) is individualized medical-nursing care aimed at improving the quality of life of newborns with life-limiting conditions and to support their families. This study draws on the analysis of the experience…

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…

New worlds open up': A qualitative study on Wonder Lab practices in Dutch paediatric palliative care with parents, healthcare professionals, and students

Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each…

Polypharmacy in Children with Medical Complexity: A Cross-Sectional Study in a Pediatric Palliative Care Center

Background: Children with medical complexity (CMC) often require multiple medications, leading to polypharmacy, which seems to be linked to adverse effects, administration errors, and increased caregiver burden. This study aimed to describe the…

Palliative Care for Dialysis-Dependent Pediatric Patients: A Survey of Providers, Nurses, and Caregivers

BACKGROUND: Dialysis-dependent pediatric patients and their families face significant biopsychosocial burdens and low health-related quality of life. Palliative care consultations can alleviate some degree of suffering for patients and families but…

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…

Building a programme theory of a specialist paediatric palliative and hospice care programme: development process and methodological reflection

Background: Paediatric palliative and hospice care aims to improve the quality of life of children with life-limiting and life-threatening conditions and their families. The number of these patients has risen significantly in recent years, resulting…

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…

The impact, perceptions and needs of parents of children with epidermolysis bullosa

Background: Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a…

Scoping Review on Transitions in the Context of Pediatric Palliative Care

Background: Children with complex and chronic conditions receiving palliative care will likely experience many transitions during their life and their treatments. Transition periods for children with life-limiting conditions and their families can be…

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