Browse Items · Pediatric Palliative Care Library

Is an advance care planning model feasible in community palliative care? A multi-site action research approach.

AIM: This article reports a study to determine the feasibility of an advance care planning model developed with Australian community palliative care services., BACKGROUND: An effective advance care planning programme involves an organizational wide…

Life expectancy among people with cerebral palsy in Western Australia

This report describes trends, predictors, and causes of mortality in persons with cerebral palsy (CP) using individuals identified by the Western Australian Cerebral Palsy Register and born between 1958 and 1994. Two thousand and fourteen people were…

Understanding parents' approaches to care and treatment of children with cancer when standard therapy has failed

PURPOSE: To examine US and United Kingdom (UK) parents' approaches to care and treatment when standard therapy has failed and consider implications for clinical practice. METHODS: We conducted a prospective, ethnographic study of parents, patients,…

Newborn genetic screening for spinal muscular atrophy in the UK: The views of the general population

BACKGROUND: Spinal muscular atrophy (SMA) is an inherited neuromuscular disorder and a leading genetic cause of infant death worldwide. However, there is no routine screening program for SMA in the UK. Lack of treatments and the inability of…

Determinants of sleep disturbances in Rett syndrome: Novel findings in relation to genotype

Rett syndrome is a rare but severe neurological disorder associated with a mutation in the methyl CpG binding protein 2 (MECP2) gene. Sleep problems and epilepsy are two of many comorbidities associated with this disorder. This study investigated the…

Practical Recommendations For Diagnosis And Management Of Respiratory Muscle Weakness In Late-onset Pompe Disease

Pompe disease is an autosomal-recessive lysosomal storage disorder characterized by progressive myopathy with proximal muscle weakness, respiratory muscle dysfunction, and cardiomyopathy (in infants only). In patients with juvenile or adult disease…

Association between opioid prescribing patterns and opioid overdose-related deaths

CONTEXT: The rate of prescription opioid-related overdose death increased substantially in the United States over the past decade. Patterns of opioid prescribing may be related to risk of overdose mortality. OBJECTIVE: To examine the association of…

Do parents want to be present during invasive procedures performed on their children in the emergency department? A survey of 400 parents

STUDY OBJECTIVES: No large study has addressed whether parents want to be present when invasive procedures are performed on their children in the emergency department. We conducted a survey to address this question. METHODS: The study used a…

Parents' participation in collegial meetings to discuss withholding or withdrawing treatment for their newborn: Working to improve information-sharing

Aim: The role of parents in decision-making concerning their child's end-of-life care is not clearly defined. Their participation is encouraged by ethical reflection, in particular by the CCNE (French National Ethics Advisory Committee), but laws are…

Perceptions of the term palliative care

OBJECTIVES: To assess parents' and health care providers' perceptions of the name and description of a pediatric palliative care (PPC) program. METHODS: Survey conducted at three pediatric health care sites; asked respondents (parents and staff)…

"We Want to Talk about Death, Dying and Grief and to Learn about End-of-Life Care"-Lessons Learned from a Multi-Center Mixed-Methods Study on Last Aid Courses for Kids and Teens

Background: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision. In 2018,…

Tags: 2024, Adolescent, Adult, Aged, April List 2024, Article, Australia, Awareness, Bollig G, Child, Children, Curriculum, Drexler D, Dying, Education, Europe, Graf K, Grief, Gruna H, Human, Interview, literacy, Male, Palliative Therapy, Pothmann R, Questionnaire, Terminal Care

Loss, trauma, and human resilience: have we underestimated the human capacity to thrive after extremely aversive events?

Many people are exposed to loss or potentially traumatic events at some point in their lives, and yet they continue to have positive emotional experiences and show only minor and transient disruptions in their ability to function. Unfortunately,…

Tags: 2004, Adaptation, Adult, Backlog, Bonanno GA, Emotions, Grief, Humans, Journal Article, Laughter, Models, Psychological, Repression, The American Psychologist, Wounds and Injuries/psychology

Brief report: psychosocial functioning of fathers as primary caregivers of pediatric oncology patients

OBJECTIVE: To evaluate the psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. METHODS: Fathers who identified themselves as the primary medical caregivers were given a packet of questionnaires, including the…

Creating social work competencies for practice in hospice palliative care

Social workers play an important role in the delivery of Hospice Palliative Care in many diverse settings. The profession brings a unique perspective to end-of-life care that reflects and supports the holistic philosophy of Hospice Palliative Care.…

Mitochondrial capacity, muscle endurance, and low energy in friedreich ataxia

Introduction: In this study we noninvasively evaluated skeletal muscle mitochondrial capacity, muscle-specific endurance, and energy/fatigue feelings in persons with Friedreich ataxia (FRDA) and able-bodied controls (AB). Methods: Forearm…

Openness and avoidance--a longitudinal study of fathers of children with intellectual disability.

BACKGROUND: Fathers' interactions with children who have intellectual disabilities (ID) or developmental delays (DD) have increased over the past few decades and may be expected to continue to increase as maternal and paternal roles, along with other…

Tags: *Developmental Disabilities/px [Psychology], *Father-Child Relations, *Fathers/px [Psychology], *Intellectual Disability/px [Psychology], *Parenting/px [Psychology], 2014, 2023 SE4 - Parent Perspectives, Adult, Bostrom, P K, Broberg, M, Child, Preschool, Female, Humans, Infant, Journal Of Intellectual Disability Research, Longitudinal Studies, Male, Qualitative Research

Facilitating day-to-day decision making in palliative care

As part of a larger grounded theory study investigating the process by which palliative care patients make everyday choices, a secondary analysis of data was conducted to investigate the ways nurses support or restrict patients' participation in…

Complex palliative care and transition: a case review

This case study assesses the effect that health and social care had on the chronic life-limiting condition of a young man going through transition from children's to adult services. He was taken into foster care at 16 years old and placed with his…

Tags: 2007, Adolescent, Adult, Backlog, Bowen M, Child, Chronic Disease, Continuity Of Patient Care, Humans, Journal Article, Male, Paediatric Nursing, Palliative Care

Health-Care Provider Personal Religious Preferences and Their Perspectives on Advance Care Planning With Patients

OBJECTIVE:: To understand how health-care providers' (HCPs) religious preferences influence their willingness to undertake advance care planning (ACP) with patients and their acceptance of other HCP's involvement. METHODS:: Online anonymous survey…

A cross-sectional controlled developmental study of neuropsychological functions in patients with glutaric aciduria type i

Background: Glutaric aciduria type I (GA-I) is an inherited metabolic disease due to deficiency of glutaryl-CoA dehydrogenase (GCDH). Cognitive functions are generally thought to be spared, but have not yet been studied in detail. Methods: Thirty…

Putting drug use in context. Life-lines of African American women who smoke crack.

Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views

Although general principles guiding the transition of individuals with chronic illness from pediatric to adult care have been established, guidelines specific for the transition of individuals with cystic fibrosis (CF) have not. To aid in the…

Melatonin treatment in individuals with intellectual disability and chronic insomnia: a randomized placebo-controlled study

BACKGROUND: While several small-number or open-label studies suggest that melatonin improves sleep in individuals with intellectual disabilities (ID) with chronic sleep disturbance, a larger randomized control trial is necessary to validate these…

A Pilot Study Of The Effectiveness Of Home Teleconsultations In Paediatric Palliative Care

We conducted a pilot study to investigate the effectiveness of a home telehealth service for paediatric palliative care consultations. Over a 10 week period, 14 of the 17 caregivers approached to be part of the study agreed to participate. Families…

T-lymphocyte concentrations of cholecystokinin-8 and beta-endorphin in eating disorders: II. Bulimia nervosa

Concentrations of cholecystokinin-8 (CCK-8) and beta-endorphin (beta-EP) in T-lymphocytes of 26 women with bulimia nervosa (BN) and in 26 age- and sex-matched healthy comparison subjects were measured. Ten patients were then treated with 300 mg/day…

T-lymphocyte cholecystokinin-8 and beta-endorphin concentrations in eating disorders: I. Anorexia nervosa

Baseline concentrations of cholecystokinin-8 (CCK-8) and beta-endorphin (beta-EP) were measured in T-lymphocytes from 33 restricting patients with anorexia nervosa (AN-R), 23 binging/purging patients with anorexia nervosa (AN-BP), and 24 healthy…

Sumatriptan-naproxen for acute treatment of migraine: a randomized trial

CONTEXT: Multiple pathogenic mechanisms may be involved in generating the migraine symptom complex, and multimechanism-targeted therapy may confer advantages over monotherapy. OBJECTIVE: To evaluate the efficacy and safety of a fixed-dose tablet…

Nitric oxide as a prognostic marker for neurological diseases

The potential value of the nitric oxide (NO) level as a prognostic marker in human brain diseases is investigated. Cerebrospinal fluid (CSF) collected from neurological patients was examined for NO content using electron paramagnetic resonance (EPR)…

Ketamine for pain in adults and children with cancer: a systematic review and synthesis of the literature

OBJECTIVE: Chronic cancer pain is often refractory and difficult to treat. Ketamine is a medication with evidence of efficacy in the treatment of chronic pain. DESIGN: This article presents a synthesis of the data on ketamine for refractory cancer…

Tags: 2013, Adult, Analgesics, Backlog, Bredlau AL, Child, Clinical Trials as Topic, Dworkin RH, Humans, Intractable, Journal Article, Ketamine, Korones DN, Neoplasms, Pain, Pain Management, Pain Medicine (malden, Mass.), Thakur R

The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers?

BACKGROUND: Caring for any child involves considerable resources, but the demands for these resources are often increased when caring for a child with a disability. These demands have implications for the psychologic and physical health of the…

Development and validation of the Communicating with Family about Brain Death Scale

This study reports development of a scale assessing communication with family about brain-dead organ donation. Two cross-sectional studies demonstrated scale validity. Tests of internal, external, and predictive validity were conducted using…

Determinants of do-not-resuscitate orders in palliative home care.

OVERVIEW: Do-not-resuscitate (DNR) orders allow home care clients to communicate their own wishes over medical treatment decisions, helping to preserve their dignity and autonomy. To date, little is known about DNR orders in palliative home care.…

Ketamine injection used orally

Ketamine has been used parenterally for pain unresponsive to opioids, including neuropathic pain, and has also been used as an alternative analgesic agent after surgery. Although oral administration of ketamine has been used for some time as a single…

Tags: 1996, Administration, Adult, Backlog, Broadley KE, Drug Resistance, Excitatory Amino Acid Antagonists/administration & dosage, Hospice Care, Humans, Journal Article, Ketamine/administration & dosage, Kurowska A, Male, Oral, Pain/drug Therapy, Palliative Medicine, Tookman A

Recent trends in cerebral palsy survival. Part II: individual survival prognosis

AIM: The aim of the study was to determine survival probabilities and life expectancies for individuals with cerebral palsy based on data collected over a 28-year period in California. METHOD: We identified all individuals with cerebral palsy, aged 4…

Meditation experience predicts less negative appraisal of pain: electrophysiological evidence for the involvement of anticipatory neural responses

The aim of mindfulness meditation is to develop present-focused, non-judgmental, attention. Therefore, experience in meditation should be associated with less anticipation and negative appraisal of pain. In this study we compared a group of…

The Impact Of A Sibling's Life-limiting Genetic Condition On Adult Brothers And Sisters

It is estimated that rare diseases affect the lives of over three million people in the United Kingdom. Of these, a significant proportion are children and young people with genetic life-limiting or life-shortening conditions. This study used a…

Gender differences in parenting a child with cancer

This study of 124 parents of children diagnosed with cancer investigates parents' perceptions of their role in the illness situation. The study found that mothers and fathers differ in their experience of and response to parenting a child with…

What do plasma beta-endorphin levels reveal about endogenous opioid analgesic function?

The death of a twin

Death or disability is much more common in multiple births than single children, especially in the perinatal period. Parents face particular problems in that their loss may be underestimated; their grieving may be impeded by the confusion between the…

Tags: 1995, Adolescent, Adult, Backlog, Bryan EM, Child, Child Psychology, Counseling, Death, Female, Fetal Death, Grief, Guilt, Humans, Infant, Journal Article, Male, Newborn, Palliative Medicine, Parent-child Relations, Preschool, sibling bereavement, Social Support, Twins

Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses

Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits…

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