Browse Items · Pediatric Palliative Care Library

How Parents And Physicians Experience End-of-life Decision-making For Children With Profound Intellectual And Multiple Disabilities.

BACKGROUND:
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions.
AIMS:
The objective of this research…

End-of-life Decision-making For Children With Severe Developmental Disabilities: The Parental Perspective.

BACKGROUND AND AIMS:
The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors…

Association of Mortality With the Death of a Sibling in Childhood.

Importance: The death of a close relative is associated with an increased mortality risk among the bereaved, but much less is known about the potential association of the death of a sibling in childhood with mortality in this population. Objective:…

Impact Of A Palliative Care Program On End-of- Life Care In A Neonatal Intensive Care Unit.

OBJECTIVE:
Evaluate changes in end-of-life care following initiation of a palliative care program in a neonatal intensive care unit.
STUDY DESIGN:
Retrospective study comparing infant deaths before and after implementation of a Palliative Care…

Using industrial processes to improve patient care

2004

Tags: 2004, Backlog, Bmj (clinical Research Ed.), Brailsford S, Connell C, Davies R, Decision Making, Great Britain, Harper P, Humans, Industry/methods/standards, Journal Article, Klein JH, Occupational Health, Patient Care/standards, Quality Of Health Care, State Medicine/standards, Waiting Lists, Young T

Use of health care among adults with chronic and complex physical disabilities of childhood

PURPOSE. The purpose of this study was to explore the patterns of health services utilization among adults with chronic and complex physical disabilities of childhood, specifically cerebral palsy, spina bifida, and acquired brain injuries.METHODS. A…

Youth and young adults with cerebral palsy: their use of physician and hospital services

OBJECTIVES: To examine patterns of health care utilization among youth and young adults who have cerebral palsy (CP) and to provide information to guide the development of health services for adults who have CP. DESIGN: This study analyzed health…

Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents

OBJECTIVES: To examine young people's and parents' accounts of communication about cancer in childhood. DESIGN: Semistructured interviews analysed using the constant comparative method. SETTING: Paediatric oncology unit. PARTICIPANTS: 13 families,…

Evaluation of heart murmurs in children: cost-effectiveness and practical implications

OBJECTIVE: To assess the cost-effectiveness of various strategies to evaluate heart murmurs in children. METHODS: We modeled 6 strategies to follow the initial examination by the pediatrician: (1) refer suspected pathologic murmurs to a cardiologist,…

Self-portraits of families with young adult cancer survivors: using photovoice

Photovoice is a participatory research methodology in which individuals photograph their everyday realities. The present study used photovoice to understand the impact of cancer on a sample of six young adult survivors of childhood cancer (YACS) and…

Chronic illness and disability

2005

Tags: 2005, Adolescent, Adolescent Transitions, Backlog, Bmj (clinical Research Ed.), Chronic Disease/psychology/therapy, Disabled Persons/psychology, Educational Status, Emotions, Family Health, Humans, Journal Article, Mental Health, Patient Compliance, Patient Transfer, Primary Health Care, Sawyer S, Yeo M

Adaptational process of parents of pediatric oncology patients

This study, based on grounded theory, explores the adaptational process of parents of pediatric oncology patients. Thirty-two Taiwanese parents (26 mothers and 6 fathers) were interviewed. Data were collected through individual in-depth and focus…

A longitudinal method of teaching pediatric palliative care to interns: preliminary findings regarding changes in interns' comfort level

OBJECTIVE: A longitudinal pediatric palliative care curriculum was introduced into the pediatric residency program at the University of California, Los Angeles. The present study explores the possible effects of this curriculum on the interns'…

Doing our best and doing no harm: A focused ethnography of staff moral experiences of providing palliative care at a Médecins Sans Frontières pediatric hospital in Cox's Bazar, Bangladesh

INTRODUCTION: The Médecins Sans Frontières (MSF) Goyalmara Hospital in Cox's Bazar, Bangladesh is a referral centre offering the highest level of care available in the Rohingya camps for pediatrics and neonatology. Efforts are underway to integrate…

Videoconferencing to reduce stress among hospitalized children

OBJECTIVES: Family-Link is a videoconferencing program that allows hospitalized children and their parents to virtually visit family members and friends using laptops, webcams, and a secure Wi-Fi connection. We evaluated the association of…

The Experiences Of Families Living With The Anticipatory Loss Of A School-age Child With Spinal Muscular Atrophy – The Parents’ Perspectives

Aims and objectives
To probe into parents’ anticipatory loss of school-age children with Type I or II spinal muscular atrophy.
Background

Spinal muscular atrophy is a rare disorder that causes death. Children die early due to either gradual atrophy…

Age-dependent change in behavioral feature in Rubinstein-Taybi syndrome

Rubinstein-Taybi syndrome (RTS) is characterized by developmental delay, postnatal growth retardation, typical facial appearance, and broad thumbs and big toes. The behavioral phenotype of children with RTS has been described as friendly and having…

What Information Do Parents Need When Facing End-of-life Decisions For Their Child? A Meta-synthesis Of Parental Feedback

BACKGROUND: The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their…

Tags: 2015, BMC Palliative Care, Communication, Decision Making, Health Knowledge Attitudes Practice, Hope, Humans, Intensive Care Units Pediatric/organization & Administration, July 2017 List, Needs Assessment, Parents/education, Parents/psychology, Sullivan J, Terminal Care/methods, Terminal Care/psychology, Time Factors, Wilkinson D, Xafis V

Death Talk: Basic Linguistic Rules And Communication In Perinatal And Paediatric End-of-life Discussions.

OBJECTIVE:
This paper considers clinician/parent communication difficulties noted by parents involved in end-of-life decision-making in the light of linguistic theory.

METHODS:
Grice's Cooperative Principle and associated maxims, which enable…

Caring Decisions: The Development Of A Written Resource For Parents Facing End-of-life Decisions

BACKGROUND: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical…

Natural history of trisomy 13

The poor prognosis of patients with trisomy 13 has long been accepted and has been ascribed to brain and heart malformations. It has been suggested, however, that the long term survival is better than was previously thought and that cardiac surgery…

Management of common neurologic symptoms in pediatric palliative care: seizures, agitation, and spasticity

Palliative care for children is complex and focuses on patients' comfort. Some of the most troublesome symptoms as patients approach the end of life are seizures, agitation, and spasticity. Many doctors caring for children at the end of life are…

Tags: 2007, Backlog, Brain/physiopathology, Child, Drug Therapy/methods, Humans, Journal Article, Licht DJ, Muscle Spasticity/drug therapy/physiopathology/therapy, Palliative Care, Pediatric Clinics of North America, Psychomotor Agitation/drug therapy/physiopathology/therapy, Seizures/drug therapy/physiopathology/therapy, Shellhaas RA, Wusthoff CJ

The impact of a palliative care team on residents' experiences and comfort levels with pediatric palliative care

BACKGROUND: 8,600 children are eligible for palliative care services each day in the US, yet many pediatric residents and pediatricians do not feel comfortable providing palliative/end of life care. OBJECTIVE: To evaluate the impact of a palliative…

End of living: maintaining a lifeworld during terminal illness

The narrative responses of 32 people with AIDS or cancer with survival prognoses of 6 months to a year to monthly interview questions about their daily lives were analysed with a team-based qualitative methodology. Two groups emerged: (a) a…

Exploring perceptions of psychological services in a children's hospice in the United Kingdom

BACKGROUND: The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers…

Pediatric organ donation and transplantation

BACKGROUND AND OBJECTIVES: There is increasing unmet need for solid organ donation. Alternative donor sources, such as donation after circulatory determination of death (DCDD), are needed. The objective of this study was to examine the impact of DCDD…

Comparing parent loss with sibling loss

The death of a loved one is a traumatic loss for children, but little attention has been paid to how children's responses vary according to who died--a parent or a sibling. This article reports the findings of a comparison between children's…

Morphine is not the only analgesic in palliative care: Literature review

BACKGROUND: No comprehensive review has been published to date, which provides information for nurses on pharmaceutical alternatives to morphine in palliative care. As nurses are often the health professional most involved with terminally ill…

Tags: 2004, Analgesics, Analgesics/therapeutic use, Backlog, Fentanyl/therapeutic use, Humans, Journal Article, Journal Of Advanced Nursing, Ketamine/therapeutic use, Methadone/therapeutic use, Morphine/therapeutic Use, Neoplasms/complications, Opioid/therapeutic use, Pain/drug Therapy, Palliative Care/methods, Wootton M

Cornerstone care for families of children with life-threatening illness.

Forty-five families of children with life-threatening illnesses for up to 10 years were interviewed. The children required many medical disciplines, as well as social, educational and material provisions, and parents described the complex and often…

Neuropathic pain: aetiology, symptoms, mechanisms, and management

We highlight current theories about peripheral neuropathic pain and show that progress in management is contingent on targeting treatment not at the aetiological factors or the symptoms but at the mechanisms that operate to produce the symptoms. This…

Tags: 1999, Backlog, Humans, Journal Article, Lancet, Mannion RJ, Pain Threshold/physiology, Pain/drug therapy/etiology/physiopathology, Peripheral Nerves/physiopathology, Peripheral Nervous System Diseases/drug therapy/etiology/physiopathology, Woolf CJ

Provision Of Services In Perinatal Palliative Care: A Multicenter Survey In The United States.

BACKGROUND:
Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy…

Positive change processes and post-traumatic growth in people who have experienced childhood abuse: understanding vehicles of change

Post-traumatic growth is an emerging area of research concerned with the positive psychological changes that can follow the experience of traumatic events. The aim of this study is to explore themes of post-traumatic growth within personal experience…

The 2002 Schering Lecture. Children's cancer symptom experiences: keeping the spirit alive in children and their families

Despite the finding that each child and family experienced cancer in their own unique way, they all shared the need to maintain a sense of spirit. Just as the suffering united the families, so too did their sense of spirit. Talk of the spirit is not…

Disease trajectories and ACT/RCPCH categories in paediatric palliative care

The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to…

Evaluation of a Continuous Quality Improvement Initiative for End-Of-Life Care for Older Noncancer Patients

OBJECTIVES: The burden of suffering among patients with end-stage chronic diseases may be greater than those of cancer patients, as a result of longer duration of illness trajectory and high prevalence of symptoms, yet they may be less likely to…

Bisphosphonates for the relief of pain secondary to bone metastases

BACKGROUND: Bisphosphonates form part of standard therapy for hypercalcemia and the prevention of skeletal events in some cancers. However, the role of bisphosphonates in pain relief for bony metastases remains uncertain. OBJECTIVES: To determine the…

Tags: 2002, Analgesics, Antineoplastic Agents/therapeutic use, Backlog, Bone Neoplasms/complications/drug therapy/secondary, Clodronate, Clodronic Acid/therapeutic use, Cochrane Database of Systematic Reviews, Diphosphonates/therapeutic use, Etidronic Acid/therapeutic use, Humans, Journal Article, Non-Narcotic/therapeutic use, Pain/drug Therapy, Randomized Controlled Trials, Wiffen PJ, Wong R

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