Browse Items · Pediatric Palliative Care Library

Managing an unexpected life - a caregiver's career': Parents' experience of caring for their child with a non-malignant life-limiting condition

Parents of children with non-malignant life-limiting conditions frequently accept roles that exceed the conventional activities of parenting in relation to the intensity, complexity and temporal nature of the family caregiver experience. This paper…

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…

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…

Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls

PURPOSE: For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to…

Household material hardship and distress among parents of children with advanced cancer: A report from the PediQUEST Response trial

BACKGROUND: The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown and herein described. METHODS: Parents of children aged ≥2 years…

Hand Castings of Children With Terminal Illnesses From Cancer Can Provide Comfort to Grieving Families

Registered nurses have voluntarily created hand casts for families, providing comfort during challenging moments. Hand casting moves the patient's family and nurses. As requested by parents, staff apply a quick-drying gel to sick children's hands and…

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…

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…

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

Exploring Parents' Experiences and Needs During Disclosure of a Cerebral Palsy Diagnosis of Their Young Child: A Scoping Review

BACKGROUND: Parents often perceive the news that their child has cerebral palsy (CP) as overwhelming and shocking. They are at increased risk of parental stress and mental health problems, which in turn can affect the interaction between the parent…

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…

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.…

Dignity in the Pediatric Population: A Systematic Review

Context: Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy and autonomy, risking infringement upon their dignity. Yet the concept of dignity in pediatrics remains underexplored relative to the adult…

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…

"My child is my job now" - Care, work and careers of mothers with disabled children in the Norwegian welfare state.

In this article, we investigate how mothers of disabled children in Norway experience the work-family conflict and its impact on their careers, highlighting the role of provision of health and welfare services. We use a qualitative multiple case…

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…

Exploring What Motivates Parents of Children Living With Medical Complexity to Participate in Research

BACKGROUND: The study aimed to understand the experience of and identify the motivations for parents participating in health research for their children with medical complexity (CMC). Patient-oriented research strategies are increasingly important in…

A 15-year experience in pediatric palliative care: a retrospective hospital-based study

BACKGROUND: The current Italian scenario of pediatric palliative care (PPC) services is characterized by inadequate coverage of the territory. Therefore, it is important to improve the referral of patients to the most appropriate setting (community…

Camp Draws You Back Into Life Again: Exploring the Impact of a Therapeutic Recreation-Based Bereavement Camp for Families Who Have Lost a Child to Serious Illness

This qualitative study explores the perceptions of impact associated with engaging in a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Interviews were completed with 12 parents who had…

Defining and quantifying population-level need for children's palliative care: findings from a rapid scoping review

BACKGROUND: The number of children who require palliative care has been estimated to be as high as 21 million globally. Delivering effective children's palliative care (CPC) services requires accurate population-level information on current and…

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…

Comprehensive care programmes for children with medical complexity

Background: Children with medical complexity (CMC) represent a small, but growing, proportion of all children. Regardless of their underlying diagnosis, by definition, all CMC have similar functional limitations and high healthcare needs. It has been…

Tags: 2024, Adolescent, adverse outcome, August List 2024, Bias, Caregiver, Child, Child Health Care, Child Preschool, Children With Medical Complexity, Chronic Disease, Cochrane Database of Systematic Reviews, Cohen E, community care, Comprehensive Health Care, Connell TG, Controlled Before-After Studies, controlled clinical trial (topic), Cox GR, D’Aprano AL, Decision Making, Emergency Health Service, Emergency Ward, Epidemiology, Functional Status, Gibb SM, Harvey AR, Health Care, Health Care Cost, Health Care Delivery, health care need, health care organization, Health Care Personnel, Health Care Quality, Health Care Utilization, health Insurance, Hospital Admission, hospital readmission, Human, Humans, Infant, Interrupted Time Series Analysis, life satisfaction, Medical Care, Meehan E, Merrick N, meta analysis, Mountford NJ, Multidisciplinary team, Multiple Chronic Conditions, Non-Randomized Controlled Trials as Topic, outcome assessment, Patient Safety, Perception, Preschool Child, Primary Health Care, Program Evaluation, pulmonary aspiration, Quality Of Health Care, Quality Of Life, Randomized Controlled Trial (topic), Randomized Controlled Trials as Topic, remuneration, Review, social determinants of health, Social Worker, statistical bias, Survival Rate, Telemedicine, Therapy, Transition To Adult Care, Williams K

Interventions Performed in Children With Immunocompromised Conditions in the Pediatric Intensive Care Unit Within 48 Hours of Death

Background: Understanding interventions preceding death in children with immunocompromised conditions is important to ensure a peaceful and dignified perideath experience. The aim of this study was to describe the number of interventions performed in…

Experiences of Fathers in Norway Attending an Online Course on Therapeutic Writing After the Death of a Child

After the unexpected death of a child, bereaved parents require prompt access to helpful support systems. Online therapeutic writing courses can make such support accessible. Because few studies have included bereaved fathers as participants, we…

Differences in palliative opportunities across diagnosis groups in children with cancer.

BACKGROUND: Childhood cancer causes significant physical and emotional stress. Patients and families benefit from palliative care (PC) to reduce symptom burden, improve quality of life, and enhance family-centered care. We evaluated palliative…

Associations between Music Therapy, Pain and Heart Rate for Children Receiving Palliative Care

Abstract Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established.…

The Needs of Children Receiving End of Life Care and the Impact of a Paediatric Palliative Care Team: A Retrospective Cohort Study

Disputes over Diagnosing Death: Is It Ethical to Test for Death by Neurologic Criteria over Parental Objection?

The article focuses on unpredictable patients diagnosis with death by neurological criteria (DNC) and mentions harm caused by overriding parent's denial in case of Maddie Reece who died of drowning. Topics discussed include team helped to understand…

Tags: 2023, April List 2023, Brain Death, Child Preschool, Consent, Diagnosis, Dissent And Disputes, Eisenberg LR, ethical issues, Ethics Medical, Female, Intracranial Pressure, Neurologic Examination, Parental Attitudes, Resuscitation Cardiopulmonary, The American Journal Of Bioethics

Vulnerability and Agency across Treatment-Seeking Journeys for Acutely Ill Children: How Family Members Navigate Complex Healthcare Before, During and After Hospitalisation in A Rural Kenyan Setting

BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations…

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…

Integrating a Palliative Approach into the Healthcare provided by the French-African Pediatric Oncology Group's Pilot Units. Insights from a 3-year Training Program

Working alongside local stakeholders, members of the French-African Pediatric Oncology Group developed a 3-year program to train pediatric oncology teams from 15 French-speaking countries in Africa in using analgesics and providing palliative care.…

Coronavirus Disease-19 Deaths among Children and Adolescents in an Area of Northeast, Brazil: Why So Many?

OBJECTIVE: To describe COVID-19 deaths among children and adolescents in Sergipe, Brazil. METHODS: Ecological study of all COVID-19 reported cases and deaths occurring in children and adolescents

The effect of multidrug-resistant organisms on social participation and quality of life in children with life-limiting conditions

BACKGROUND: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room…

Sleep problems in children with Sanfilippo syndrome.

Sanfilippo syndrome is a rare degenerative disorder which has severe intellectual and behavioural sequelae, commonly including sleep problems. A parental questionnaire was used to gather information on the sleep patterns of 80 children with…

Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups

The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were…

Use of patient-controlled analgesia for pain control in dying children

BACKGROUND: In the last week of life, the daily opioid dose in children is highly variable, making the use of patient-controlled analgesia (PCA) a useful therapy option. Scientific data on the use of PCA in paediatric palliative care are rare.…

Healthcare Utilization and Spending for Constipation in Children With Versus Without Complex Chronic Conditions

OBJECTIVES: The aim of the study was to examine the prevalence of diagnosis and treatment for constipation among children receiving Medicaid and to compare healthcare utilization and spending for constipation among children based on number of complex…

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