Browse Items · Pediatric Palliative Care Library

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…

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…

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…

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…

The aggressive end-of-life care in pediatric cancer patients in taiwan

Background/Objectives: Despite the dramatically improved outcomes for pediatric cancer patients, cancer is the leading cause of death in Taiwan, accounting for 21.8% of death in 2014. The pediatric end-of-life (EOF) care has not been extensively…

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…

Physicians' attitudes when faced with life-threatening events in children with severe neurological disabilities

Purpose: Children with severe neurological disabilities are at an increased risk of acute, life-threatening events. We assessed physicians' attitudes when making decisions in these situations.

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…

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…

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…

The experiences of Chinese family members of terminally ill patients - a qualitative study

AIM: To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit. BACKGROUND: Palliative care aims to provide care to dying patients and their family…

Designing the physical environment for inpatient palliative care: A narrative review

Background: It is essential that the physical environments in which inpatient palliative care is provided support the needs of patients and the facilitate the multidimensional delivery of palliative care. This review aims to identify the features and…

Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study

Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured…

Vulnerable Populations Receiving Palliative Radiation in a Children's Hospital: Reporting on the Underreported

Purpose/Objective(s): Few studies have examined the use of palliative radiation therapy (RT) in the pediatric population. This single institution study is one of the largest series reported of palliative RT practice patterns prior to and within the…

Frequent school-based clinic utilization: a comparative profile of problems and service needs

The purpose of this study is to compare frequent users of school-based clinic services with students who have an average rate of utilization. SAMPLE: Of the 1413 students enrolled in a Denver school-based clinic (DSBC) during the 1989-1990 school…

Stress, social support, and sense of coherence

In the Salutogenic Model, Aaron Antonovsky suggested that a sense of coherence (SOC) is the key determinant in the maintenance of health. He theorized that individuals with a strong SOC have the ability to (a) define life events as less stressful…

Improving the Care of Children With Advanced Cancer by Using an Electronic Patient-Reported Feedback Intervention: Results From the PediQUEST Randomized Controlled Trial

Purpose This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL). Patients and Methods This…

Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care

Context Parents' understanding of prognosis or decision making about palliative care for children who die of cancer is largely unknown. However, a more accurate understanding of prognosis could alter treatment goals and expectations and lead to more…

Pediatric Ethics and Communication Excellence (PEACE) Rounds: Decreasing Moral Distress and Patient Length of Stay in the PICU

This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers' moral distress and decrease length of stay for patients with life-threatening illnesses. We…

How do teens view the physical and social impact of asthma compared to other chronic diseases?

We surveyed cognitively normal teens with and without chronic illness regarding the perceived physical and social impact of various chronic diseases including asthma. The overall physical impact of asthma was perceived equivalently to diabetes and…

Tags: 2006, Adolescent, Adolescent Transitions, Asthma/psychology, Backlog, Cheung C, Chronic Disease, Female, Humans, Journal Article, Male, Motor Activity, Questionnaires, Social Adjustment, Spier S, The Journal Of Asthma : Official Journal Of The Association For The Care Of Asthma, Wirrell E

Content review of pediatric ethics consultations at a cancer center

Background/objectives: Ethical challenges in pediatric oncology arise at every stage of illness. However, there are sparse data on the content of and reason for ethics consultations in the field. We sought to evaluate the content and characteristics…

The economic burden of home care for children with HIV and other chronic illnesses

OBJECTIVES: We compared types, amounts, and costs of home care for children with HIV and chronic illnesses, controlling for the basic care needs of healthy children to determine the economic burden of caring for and home care of chronically ill…

Children's complex health: Maternal experiences of care and decision making

An increasing number of children with complex life-limiting and life-threatening conditions are being cared for at home by their parents. Negative impacts on maternal health are now being recognised. This study sought to voice parental experiences to…

Use of methadone in the morphine-tolerant burned paediatric patient

We describe the successful use of methadone in the restoration of sedation and provision of analgesia in two morphine-tolerant, paediatric patients who had suffered significant thermal injuries and were undergoing mechanical ventilation. Both…

Pharmacogenetics of codeine metabolism in an urban population of children and its implications for analgesic reliability

BACKGROUND: Codeine analgesia is wholly or mostly due to its metabolism to morphine by the cytochrome P450 enzyme CYP2D6, which shows significant genetic variation in activity. The aims of this study were to investigate genotype, phenotype and…

Changing geographies of care: employing the concept of therapeutic landscapes as a framework in examining home space

Changes in health care service delivery have resulted in the transfer of care from formal spaces such as hospitals and institutions towards informal settings such as home. Due to the degree of this transfer, it is increasingly important for…

Ethical Dilemmas In Postnatal Treatment Of Severe Congenital Hydrocephalus.

Severe congenital hydrocephalus manifests as accumulation of a large amount of excess fluid in the brain. It is a paradigmatic example of a condition in which diagnosis is relatively straightforward and long-term survival is usually associated with…

Transition: a conceptual analysis in the context of siblings of children with cancer

Transition has been described by many disciplines. However, the concept of transition has yet to be applied to the sibling experience of childhood cancer. Understanding the transitions that siblings encounter is important because it will offer nurses…

Parents of children diagnosed with cancer: work situation and sick leave, a five-year post end-of-treatment or a child's death follow-up study

BACKGROUND: Cancer in a child is associated with a significant impact on parental employment. We assessed the proportions of parents of survivors and bereaved parents working and reporting sick leave five years after end of successful treatment…

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