Browse Items · Pediatric Palliative Care Library

Parents' Perception of Their Relationship Following the Loss of a Child.

It is known that if one partner wants to talk after the loss of a child, while the other does not, the less satisfied they are with the relationship. The aim of this study was to increase our understanding of parental relationships following the loss…

Research priorities in pediatric palliative care: a delphi study

Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care. Objectives: The goal…

Views of adolescents and parents on pediatric research without the potential for clinical benefit

Barriers to conducting advance care discussions for children with life-threatening conditions.

BACKGROUND AND OBJECTIVE: Advance care discussions (ACD) occur infrequently or are initiated late in the course of illness. Although data exist regarding barriers to ACD among the care of adult patients, few pediatric data exist. The goal of this…

A revision of the intensity of treatment rating scale: classifying the intensity of pediatric cancer treatment

Parent reports of quality of life for pediatric patients with cancer with no realistic chance of cure

PURPOSE: To compare quality of life of children with cancer with no reasonable chance of cure reported by parents 6 months or fewer versus more than 6 months before death. PATIENTS AND METHODS: This cross-sectional study included children between the…

Parental assessment of pain coping in individuals with intellectual and developmental disabilities

Pain coping is thought to be the most significant behavioural contribution to the adjustment to pain. Little is known about how those with intellectual and developmental disabilities (IDD) cope with pain. We describe parental reported coping styles…

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…

Complementary and alternative therapy use in pediatric oncology patients with failure of frontline chemotherapy

BACKGROUND: The use of CAM by the relapsed pediatric oncology population has largely gone unstudied. The main objective of this study was to describe the prevalence of and change in CAM use in oncology patients for whom frontline therapy had failed.…

The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability

This is the first report on the McGill Quality of Life Questionnaire (MQOL), a questionnaire relevant to all phases of the disease trajectory for people with a life-threatening illness. This questionnaire differs from most others in three ways: the…

Palliative care on the net: an online survey of health care professionals

A survey was conducted to explore Internet use by palliative care health professionals (HCP). The survey was placed on the World Wide Web with an underlying database, and palliative care HCP were invited to participate via a palliative-care-related…

Self-concept of siblings of children with cancer

Childhood cancer can have detrimental effects on the psychosocial well-being of healthy siblings of children with cancer. The limited research done over the past 40 years has identified adjustment difficulties such as poor self-concept, depression,…

Symptoms and Suffering at the End of Life in Children with Cancer

Cancer is the leading cause of nonaccidental death in childhood.1 There has, however, been little evaluation of the overall experience at the end of life of children who are dying of cancer or of their symptoms other than pain.2,3 A number of studies…

Tags: 2000, Anorexia/etiology/therapy, Backlog, Boston, Child, Children's Hospital (Boston), Clodronate, Constipation/etiology/therapy, Dana-Farber Cancer Institute (Boston), Death and Euthanasia, Diarrhea/etiology/therapy, Dyspnea/etiology/therapy, Ellenbogen JM, Emanuel EJ, Empirical Approach, Fatigue/etiology/therapy, Grier Holcombe E, Health Care Surveys, home care services, Humans, Journal Article, Klar Neil, Levin SB, Logistic Models, Longitudinal Studies, Neoplasms/complications/therapy, New England Journal Of Medicine, Non-U.S. Gov't, Oncology at EOL, P.H.S., Pain/etiology/therapy, Palliative Care/standards/statistics & Numerical Data, Parents, Physicians, Professional Patient Relationship, Psychological, Quality Of Health Care, Quality Of Life, Questionnaires, Research Support, Salem-Schatz S, Stress, Terminal Care, U.S. Gov't, Weeks Jane C, Withholding Treatment, Wolfe J

Measured enthusiasm: does the method of reporting trial results alter perceptions of therapeutic effectiveness?

OBJECTIVE: To compare clinicians' ratings of therapeutic effectiveness when different trial end points were presented as percent reductions in relative compared with absolute risk and as numbers of patients treated to avoid one adverse outcome.…

Pain in the pediatric patient: practical aspects of assessment

A child's pain is plastic and complex. In order to more effectively alleviate suffering, emphasis must shift from an exclusive focus on the source of tissue damage to a more comprehensive focus that includes factors that modulate pain. Evaluating a…

Tags: 1995, Adolescent, Backlog, Child, Child Behavior, Female, Humans, Infant, Journal Article, Male, McGrath PA, Pain Measurement/methods, Pain/etiology/psychology/therapy, Pediatric Annals, Preschool, Questionnaires

Children with cancer talk about their own death with their families

In this study we looked at children dying from progressive malignant diseases and their families, to see whether they discussed the child's impending death together. We also looked at what factors might influence this. We questioned staff in the…

Impact of a chronic illness in childhood: siblings' perceptions

This project investigated siblings' perceptions of family disruption when a brother or sister had cystic fibrosis (CF) or asthma. Data were gathered by phone interviews and questionnaires. Phone interviews were conducted with siblings of chronically…

Tags: 1996, Adolescent, Attitude To Health, Backlog, Child, Chronic Disease, Cystic Fibrosis, Derouin D, Female, Humans, Issues In Comprehensive Pediatric Nursing, Jessee PO, Journal Article, Male, Nursing Methodology Research, Pediatric Nursing, Questionnaires, sibling bereavement, Sibling Relations

Grandma's hands: parental perceptions of the importance of grandparents as secondary caregivers in families of children with disabilities

This study examines parental perceptions of the importance of grandparents as providers of routine care to children with disabilities and the impact of such assistance on parental well-being. Data are drawn from a survey and follow-up interactive…

Assessing mothers' attitudes about the physician's role in child health promotion

OBJECTIVE: This study assessed maternal attitudes about the physician's role in child health promotion. METHODS: Home interviews were conducted with 200 Massachusetts mothers (with one child age 2 to 3 years) enrolled in a health maintenance…

Variability in physician opinion on limiting pediatric life support

OBJECTIVE: We conducted this study to investigate how physicians in a pediatric intensive care unit (ICU) currently make decisions to withdraw and withhold life support. Consultation with the patient's primary caregiver often precedes decisions about…

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…

Dimensions of the role of the social worker in palliative care

There has been very little research focusing on the role of the social worker in a specialist palliative care service. A qualitative research methodology was used which sought to capture the essence of that role, as perceived by those carrying it…

Tags: 2000, Anxiety/rehabilitation, Attitudes, Backlog, Great Britain, Health Knowledge, Humans, Journal Article, Judgment, Palliative Care/organization & Administration, Palliative Medicine, Practice, Professional Practice, Professional-family Relations, Questionnaires, Sheldon FM, Social Work/organization & administration

The health-line--a method for collecting data on self-rated health over time: a pilot study

BACKGROUND: There is a need for an instrument to record a life-course perspective of self-rated health. AIM: To test the "health-line", a simple, comprehensive method of collecting data on self-rated health over time. METHOD: In 1996, a questionnaire…

A theory of healing in the aftermath of youth suicide. Implications for holistic nursing practice

The purpose of this family-focused, grounded-theory study was to develop a substantive theory that explains how individual family members heal in the aftermath of youth suicide. Individual healing following youth suicide is conceptualized as a…

Communicating the benefits of chronic preventive therapy: does the format of efficacy data determine patients' acceptance of treatment?

Patients' informed acceptance of chronic medical therapy hinges on communicating the potential benefits of drugs in quantitative terms. In a hypothetical scenario of treatment initiation, the authors assessed how three different formats of the same…

Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain

This study was carried out in eight palliative care services in four Canadian cities. A revised version of The McGill Quality of Life Questionnaire (MQOL) is compared to a single-item scale measuring overall quality of life (SIS), and the…

Things that help and hinder adolescent sibling bereavement

A taxonomy of the things that help and hinder adolescents' sibling bereavement was developed from the responses of 140 bereaved adolescents to the questions What helped you cope with your sibling's death? and What made it harder to cope with your…

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…

A computerized school-based health assessment with rapid feedback to improve adolescent health

Adolescent health problems are often undetected in physicians' offices. The Dartmouth Primary Care Cooperative Information Project has developed a validated and reliable approach to identify adolescent health problems and initiate education in a…

Your child is dead

OBJECTIVE--To determine parent's views on how death of their children should have been handled. DESIGN--Retrospective questionnaire survey of parents who had experienced death of their child. SETTING--Charitable organisation of bereaved parents.…

Feeding and nutritional characteristics in children with moderate or severe cerebral palsy

This study was undertaken to characterize the current feeding situation and nutritional status of moderately or severely disabled children with cerebral palsy (CP). Thirty-five children with CP (17 with diplegia, 11 with dystonia, 6 with tetraplegia…

Caregivers' perceptions following gastrostomy in severely disabled children with feeding problems

Feeding difficulties are common in neurologically impaired children, often leading to great distress and frustration in the child and family. A gastrostomy may be advocated if oral intake is inadequate causing poor weight gain or when there is…

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…

Support as a crucial predictor of good compliance of adolescents with a chronic disease

The purpose of this study was to describe the factors that predict compliance among adolescents with a chronic illness. The data were collected by questionnaires from adolescents with asthma, epilepsy, juvenile rheumatoid arthritis (JRA) and…

Health status of bereaved parents

Forty-seven mothers and 33 fathers, representing 48 families, participated in a propective longitudinal study of the effects on family members of a child's dying. The purpose of this article is to describe parents' health during the terminal illness…

Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity

OBJECTIVE: Anxiety and depression may have a major impact on a person's ability to make decisions. Characterization of symptoms that reflect anxiety and depression in family members visiting intensive care patients should be of major relevance to the…

End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses

OBJECTIVE: To determine the attitudes and practices of pediatric critical care attending physicians and pediatric critical care nurses on end-of-life care. DESIGN: Cross-sectional survey. SETTING: A random sample of clinicians at 31 pediatric…

Variability among institutional review boards' decisions within the context of a multicenter trial

BACKGROUND: Institutional review boards (IRBs) are given discretion to interpret and apply the federal regulations governing the protection of human subjects in research. OBJECTIVE: To determine the extent of the variability among different IRBs on…

Reasons for dissatisfaction: A survey of relatives of intensive care patients who died

OBJECTIVE: To describe the reasons for eventual dissatisfaction among the families of patients who died in the intensive care unit (ICU), regarding both the assistance offered during the patient's stay in the hospital and the information received…

Factors explaining variability among caregivers in the intent to restrict life-support interventions in a pediatric intensive care unit

OBJECTIVE: To explore patient-related factors which influence the decisions of pediatric intensive care unit (ICU) caregivers to restrict life-support interventions. DESIGN: Cross-sectional survey. SETTING: A university-affiliated pediatric ICU.…

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