Browse Items · Pediatric Palliative Care Library

Parents' perspectives regarding a physician-parent conference after their child's death in the pediatric intensive care unit

OBJECTIVE: To investigate parents' perspectives on the desirability, content, and conditions of a physician-parent conference after their child's death in the pediatric intensive care unit (PICU). STUDY DESIGN: Audio-recorded telephone interviews…

Opioid use in palliative care of children and young people with cancer

OBJECTIVE: Identify opioids prescribed, preferred routes, and doses among children with incurable cancer. STUDY DESIGN: Prospective survey with monthly questionnaires regarding patients 0 to 19 years old from oncology centers. Data were collected by…

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'…

End-of-life practices in the Netherlands under the Euthanasia Act

BACKGROUND: In 2002, an act regulating the ending of life by a physician at the request of a patient with unbearable suffering came into effect in the Netherlands. In 2005, we performed a follow-up study of euthanasia, physician-assisted suicide, and…

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…

Using drugs to end life without an explicit request of the patient

A small proportion of deaths result from the use of drugs with the intention to hasten death without an explicit request of the patient. Additional insight into its characteristics is needed for evaluating this practice. In the Netherlands in 2001,…

The Adolescent Adjustment Profile (AAP) in comparisons of patients with obesity, phenylketonuria or neurobehavioural disorders

Psychosocial development in children with chronic disease is a key issue in paediatrics. This study investigated whether psychosocial adjustment could be reliably assessed with the 42-item Adolescent Adjustment Profile (AAP) instrument. The study…

Tags: 2008, Adjustment, Adolescent Transitions, Alm J, Backlog, Brodin U, Journal Article, Marcus C, Marild S, Neurobehavioural syndromes, Obesity, Olsson G, Phenylketonuria, Questionnaires, Rydelius PA

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…

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…

Family function in families of children with Duchenne muscular dystrophy

This article investigates the relationships of child- and family-related variables with family function in families with children who have Duchenne muscular dystrophy. Child-related variables included level of disability (indicator: Barthel Index)…

Young people's satisfaction of transitional care in adolescent rheumatology in the UK

BACKGROUND: To examine the quality of transitional health care from the perspectives of young people with juvenile idiopathic arthritis (JIA) and their parents. METHODS: Adolescents with JIA and their parents were recruited from 10 major UK…

Development and preliminary validation of the 'Mind the Gap' scale to assess satisfaction with transitional health care among adolescents with juvenile idiopathic arthritis

BACKGROUND: To develop a scale to assess satisfaction with transitional health care among adolescents with a chronic illness and their parents. METHODS: The 'Mind the Gap' scale was developed using evidence from a previous needs assessment, in three…

Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: a hospital-based approach

INTRODUCTION: The outcomes of different types of transitions of young people with chronic diseases have been poorly investigated. OBJECTIVE: To evaluate and compare a structured transition from the paediatric diabetes services (PDS) into the adult…

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…

Pain in children with cerebral palsy: a cross-sectional multicentre European study.

AIM: To determine the prevalence and associations of self-reported and parent-reported pain in children with cerebral palsy (CP) of all severities., METHOD: Cross-sectional design using a questionnaire; analysis using ordinal regression. Children…

Survey of primary care pediatricians on the transition and transfer of adolescents to adult health care

The transition and transfer from pediatrics to adult health care of youth with and without special health care needs has become a focus of professional organizations, health care insurers, national policy makers, and providers. To understand…

Chemotherapy-related fatigue in childhood cancer: correlates, consequences, and coping strategies

The aim of this research is to examine the experience and impact of chemotherapy-related fatigue in recently diagnosed pediatric oncology patients. A repeated-measures, within-subjects, mixed (quantitative plus qualitative) design was used to…

Tags: 2008, Adaptation, Antineoplastic Agents/adverse effects, Backlog, Child, Davies B, Fatigue/chemically induced, Friedman D, Gudmundsdottir M, Humans, Journal Article, Journal Of Pediatric Oncology Nursing, McCarthy P, Neoplasms/drug therapy/psychology, Parents, Psychological, Questionnaires, Whitsett SF

Pediatric palliative care: feedback from the pediatric intensivist community

With the emergence of a more formalized field of pediatric palliative care (PPC), it is important for individuals and organizations involved in PPC to gather input from patients with life-threatening/life-limiting conditions, their families, and…

Predictors of good adherence of adolescents with diabetes (insulin-dependent diabetes mellitus)

OBJECTIVES: The purpose of this study was to identify the factors that predict good adherence to health regimens by adolescents with diabetes (insulin-dependent diabetes mellitus). METHODS: Altogether, 300 individuals aged 13-17 years were randomly…

Retaining young people in a longitudinal sexual health survey: a trial of strategies to maintain participation

BACKGROUND: There is an increasing trend towards lower participation in questionnaire surveys. This reduces representativeness, increases costs and introduces particular challenges to longitudinal surveys, as researchers have to use complex…

The impact of consent on observational research: a comparison of outcomes from consenters and non consenters to an observational study

BACKGROUND: Public health benefits from research often rely on the use of data from personal medical records. When neither patient consent nor anonymisation is possible, the case for accessing such records for research purposes depends on an…

Tags: 2008, Backlog, Bmc Medical Research Methodology, Breast Neoplasms/pathology/therapy, Female, Humans, Informed Consent, Journal Article, Macleod U, Medical Records, Neoplasm Staging, Observation/methods, Questionnaires, Socioeconomic Factors, Watt GC

Impact of caring for a child with cancer on parents' health-related quality of life

PURPOSE: To compare the health-related quality of life (QOL) of parents of children who are undergoing treatment for cancer with that of Canadian population norms and to identify important parent and child predictors of parental QOL. PATIENTS AND…

Parents' views of cancer-directed therapy for children with no realistic chance for cure

PURPOSE: Previous literature suggests that parents often wish to continue cancer-directed therapy for their children with incurable cancer. We assessed parents' experiences with treatment for their children with cancer and no realistic chance of…

Availability and use of palliative care and end-of-life services for pediatric oncology patients

PURPOSE: Palliative care prevents or relieves the symptoms caused by life-threatening medical conditions. Previous surveys have shown both underuse and lack of availability of these services for children with cancer throughout North America. We…

The reflections you get': an exploration of body image and cachexia.

BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people…

Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey

BACKGROUND: Legalization of euthanasia and physician-assisted suicide has been heavily debated in many countries. To help inform this debate, we describe the practices of euthanasia and assisted suicide, and the use of life-ending drugs without an…

The role of nurses in physician-assisted deaths in Belgium

BACKGROUND: Belgium's law on euthanasia allows only physicians to perform the act. We investigated the involvement of nurses in the decision-making and in the preparation and administration of life-ending drugs with a patient's explicit request…

Moving on from paediatric to adult health care: an initial evaluation of a transition program for young people with cystic fibrosis

BACKGROUND AND OBJECTIVE: Although there are general guidelines for adolescents with chronic illnesses making the transition from paediatric to adult health care, there are few studies which evaluate transition programs. This cross-sectional study…

Scoring evaluation of the natural course of mucopolysaccharidosis type IIIA (Sanfilippo syndrome type A)

OBJECTIVE: Mucopolysaccharidosis types IIIA through IIID (Sanfilippo syndrome) are caused by deficiencies of enzymes involved in the degradation of heparan sulfate. The onset and severity of the disease are highly variable. The purpose of this study…

The relationship between grief adjustment and continuing bonds for parents who have lost a child

This article presents findings from a study on the impact of a child's death on parents. We explored the prominence and adaptiveness of parents' continuing bonds expressions, psychological adjustment, and grief reactions. A qualitative case study…

Supportive care needs of women with lung cancer

The main purpose of this exploratory study was to identify the supportive care needs of women with lung cancer who attend an ambulatory regional cancer centre. Lung cancer has more than a physical impact on those who are diagnosed with the disease,…

Tags: 2008, Backlog, Canadian Oncology Nursing Journal, Caregivers, Fitch MI, Journal Article, Lung Cancer, Lung Neoplasms, Questionnaires, Steele R, Support, Women

Practitioner Empathy and the Duration of the Common Cold

Objective: This study's objective was to assess the relationship of empathy in medical office visits to subsequent outcomes,of the common cold. Methods: A total of 350 subjects >= 12 years of age received either a standard or enhanced physician visit…

Adolescents' reports of parental knowledge of adolescents' use of sexual health services and their reactions to mandated parental notification for prescription contraception

CONTEXT: Legislation has been proposed that would mandate parental notification for adolescents younger than 18 years (minors) obtaining prescription contraception from federally funded family planning clinics. OBJECTIVE: To determine the extent to…

Clinical and biochemical spectrum of D-bifunctional protein deficiency

OBJECTIVE: D-bifunctional protein deficiency is an autosomal recessive inborn error of peroxisomal fatty acid oxidation. Although case reports and small series of patients have been published, these do not give a complete and balanced picture of the…

Anorexia/cachexia-related quality of life for children with cancer

BACKGROUND: Anorexia is a common symptom in patients with cancer, which can lead to poor tolerance of treatment and can contribute to cachexia in extreme cases. Children with advanced-stage cancer are especially vulnerable to malnutrition resulting…

Experience in the use of the palliative care outcome scale.

GOALS OF WORK: The objective of the study is to assess the Palliative Care Outcome Scale (POS) as a potential audit tool within a specialist cancer centre. It also aims to answer the following questions: does the tool identify problem areas and…

Sleep disturbances in aspartylglucosaminuria (AGU): a questionnaire study.

Sleep disturbances are common in many progressive metabolic encephalopathies. The possible presence of disturbed sleep-wake behaviour in the lysosomal storage disorder aspartylglucosaminuria, has not been previously studied, however. The sleep-wake…

Quality of life related to type 1 Gaucher disease: Spanish experience

The impact of type 1 Gaucher disease and its therapy on health-related quality of life (QOL) was investigated and the results were compared with a Spanish adult normative group. PATIENTS AND METHODS: Between January 1998 and December 2002, a…

Tags: 2005, Backlog, Exercise, Gaucher Disease/pp [Physiopathology], Giraldo P, Giralt M, Humans, IM, Journal Article, Perez-Calvo JI, Prospective Studies, Quality Of Life, Quality of Life Research, Questionnaires, Rubio-Felix D, Solano V, Spain, Spanish Group on Gaucher disease

Parental decision making in pediatric cancer end-of-life care: Using focus group methodology as a prephase to seek participant design input

The ultimate aim of our research program is to provide strategies that facilitate parental decision-making for parents of children with cancer receiving end-of-life care. As a first step to develop this program, we needed insight into parents'…

Mothers' recollections of the Paediatric Intensive Care Unit: associations with psychopathology and views on follow up

The aim of this study was to establish rates of posttraumatic stress symptoms in mothers after a child's admission to a Paediatric Intensive Care Unit (PICU) and their views on the potential value of a follow up appointment with PICU staff.…

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