Browse Items · Pediatric Palliative Care Library

Whose utilities for decision analysis?

The goal of this study was to examine sources of variation in the utilities assigned to health states. The authors selected a common clinical problem, carcinoma of the rectum, and examined the utilities assigned to colostomy, a common outcome of…

What is wrong with end-of-life care? Opinions of bereaved family members

OBJECTIVE: To describe family perceptions of care at the end of life. METHODS: In a representative sample of older people who died from chronic diseases, family members were interviewed about satisfaction with treatment intensity, decision-making,…

What constitutes meaningful engagement for patients and families as partners on research teams?

Objective There is growing emphasis on health care organizations to ensure that lay people are meaningfully engaged as partners on research teams. Our aim was to explore the perspectives of patients, family members and informal caregivers who have…

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

Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth

BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification…

Using a treatment-tradeoff method to elicit preferences for the treatment of locally advanced non-small-cell lung cancer

The study was designed to evaluate a treatment-tradeoff method for its potential in helping lung cancer patients make treatment decisions. A treatment-tradeoff interview was conducted to determine how patients weighed potential survival benefits…

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…

The sorcerer's broom: medicine's rampant technology

Discusses the impact of technology on the practice of medicine. Effect of technology to medical inflation; Influence of technology on the attempt to reform the health care system and on the redirection of the goals of health care system; Problems…

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…

The multiple meanings of long-term gastrostomy in children with severe disability

Although the physiological implications of long-term gastrostomy for children with severe disability are well documented in the nursing literature, little is known about the psychosocial effect of this technological intervention. This study documents…

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…

The family, crisis and chronic illness: an evolutionary model

While chronic illness has a profound impact upon the individual, an immense burden is imposed upon the family. When the competing demands of an illness and the family escalate exponentially, there may be a crisis. Traditionally, crisis theory has…

Tags: 1992, Adolescent, Attitude To Health, Backlog, Chronic Disease/nursing/psychology, Crisis Intervention, Emergencies/nursing/psychology, Family/psychology, Female, Halliday PH, Humans, Journal Article, Journal Of Advanced Nursing, Models, Nursing, Parent caregivers, Role, Shaw MC, Systems Theory

The determinants of health care seeking behaviour of adolescents attending STD clinics in South Africa

The study investigated the determinants of delay behaviour in health care seeking in a sample of 292 adolescent patients (20 years and younger) with STD symptoms. Fifty six percent (56%) of the adolescents sought health care within the first 6 days…

The attitude of young adults with chronic disease or handicaps towards enforced treatment and euthanasia

One hundred fifty-nine young adults in the 17-18 year old age group suffering from chronic disease or handicap participated in this study which examined their attitudes towards enforced treatment and euthanasia in terminal patients. The comparison…

The assessment of values in laryngeal cancer: reliability of measurement methods

Although quantitative estimates of patients' attitudes toward the relative importance of different aspects of health are of great potential usefulness in medical decision making, there is little information about the stability of such values over…

The art of healing and knowing in cancer and palliative care

This article examines the role of artwork in cancer and palliative care. The literature review focuses on both children and adults. One case scenario focuses on a child's reaction to his mother's illness showing his distress through painting. Artwork…

Symptoms suffered by life-limited children that cause anxiety to UK children's hospice staff

BACKGROUND: Very little is published about the symptom profile of children with life-limiting illnesses other than cancer. METHOD: A postal questionnaire was sent to children's hospice staff who were asked to identify symptoms experienced by…

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…

Stress, coping, and hope

Hope is discussed in many literatures and from many perspectives. In this essay hope is discussed from the vantage of psychology and stress and coping theory. Hope and psychological stress share a number of formal properties: both are contextual,…

Tags: 2010, Adaptation, Attitude To Health, Backlog, Folkman S, Humans, Journal Article, Neoplasms/psychology, Psycho-Oncology, Psychological, Psychological/psychology, Stress, Uncertainty

Siblings of a child with cancer

A total of 21 healthy siblings were interviewed about their experiences when a brother or sister is diagnosed with cancer. Information about the illness, opinions about who should inform siblings, social support, specific worries and worst memories…

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…

Recruiting for research in hospice: feasibility of a research screening protocol

BACKGROUND: The growth of palliative care research has been limited by challenges of slow recruitment and underenrollment. One potential solution to this problem is the use of screening questions embedded in clinical data collection, which identify…

Quality assurance in palliative care: some of the problems

This review considers some of the difficulties associated with quality assurance in the context of palliative care. In particular, it will focus on the key question of who should be responsible for assessing quality and the problems of over-reliance…

Tags: 1995, Attitude Of Health Personnel, Attitude To Health, Backlog, European Journal Of Cancer Care, Faulkner A, Health Care/organization & administration, Hospice Care/organization & administration, Human, Ingleton C, Journal Article, Quality Assurance

Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates

Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the…

Psychiatric and physical morbidity effects of caregiving

Existing empirical literature on the prolonged or cumulative consequences of exposure to the stresses of caregiving is reviewed. Specific goals are to identify psychiatric and physical morbidity effects, report the magnitude of those effects,…

Primary care supports for children with chronic health conditions: identifying and predicting unmet family needs

OBJECTIVE: To examine unmet needs among families of children with chronic health conditions treated in primary care settings and to identify predictors of these needs. METHOD: Primary care physicians referred 83 caregivers of children with chronic…

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…

Pediatric palliative care: the time has come.

2002

Tags: 2002, Archives Of Pediatrics & Adolescent Medicine, Attitude To Health, Backlog, Child, Child Psychology, Chronic Disease, Communication, Family/psychology, Humans, Hutton N, Journal Article, Longitudinal Studies, Needs Assessment, Palliative Care/methods/psychology/trends, Pediatrics/methods/trends, Professional-family Relations, Quality Of Life, Terminal Care/methods/psychology/trends

Pediatric advance directives: parents' knowledge, experience, and preferences

OBJECTIVES: To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness. METHODS: We conducted a prospective, cross-sectional survey of parents and caregivers of…

Patient-reported outcomes in end-of-life research in pediatric oncology

OBJECTIVE: The purpose of this review of published literature was to identify the number and focus of empirically based papers that included research methods used to directly solicit patient-reported outcomes (PRO) from pediatric oncology patients at…

Tags: 2007, Allen C, Attitude To Death, Attitude To Health, Brandon J, Child, Hijiya N, Hinds PS, Hospice Care, Humans, Journal of Pediatric Psychology, Kane JR, Neoplasms/px [psychology], Neoplasms/th [therapy], Newsome R, Oncology 2017 List, Palliative Care, Quality Of Life

Parents' attitudes towards a difficult situation resulting from the chronic disease of their child

INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation…

Parents' attitudes towards a difficult situation resulting from the chronic disease of their child

INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation…

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'…

Parental Concordance Regarding Problems and Hopes for Seriously Ill Children: A Two-Year Cohort Study

CONTEXT: Parents of a seriously ill child may have different concerns and hopes for their child, and these concerns and hopes may change over time. OBJECTIVES: In a mixed-method prospective cohort of parental dyads of children with serious illness,…

Parent resuscitation preferences for young people with severe developmental disabilities.

OBJECTIVE: To determine the relationship of providing explanatory information regarding resuscitation to DNR status for parents and guardians of young people who reside in a pediatric skilled nursing facility., DESIGN: Retrospective,…

Tags: 2006, Adolescent, Adult, Advance Care Planning/og [Organization & Administration], Advance Care Planning/organization & Administration, Analysis of Variance, Attitude To Health, Backlog, Child, Choice Behavior, Consent Forms, Developmental Disabilities/co [Complications], Developmental Disabilities/complications/therapy, Developmental Disabilities/th [Therapy], DNAR, Documentation, Female, Friedman SL, Health Education/og [Organization & Administration], Health Education/organization & administration, Humans, Journal Article, Journal Of The American Medical Directors Association, Male, Massachusetts, Organizational Policy, Parents, Parents/ed [education], Parents/education/psychology, Parents/px [psychology], Preschool, Program Evaluation, Resuscitation Orders/psychology, Resuscitation Orders/px [Psychology], Retrospective Studies, Skilled Nursing Facilities/og [Organization & Administration], Skilled Nursing Facilities/organization & administration, Treatment Refusal/psychology, Treatment Refusal/px [Psychology]

Parent Perspectives During Hospital Readmissions for Children With Medical Complexity: A Qualitative Study

OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent…

Parent and health care provider communication and decision making in the intensive care nursery

This study investigated parents' and health care providers' perspectives of their communicative interactions when a seriously ill infant is treated in an intensive care nursery. Both parents and health care providers stressed the importance of…

Pain in pediatric oncology: do the experiences of children and parents differ from those of nurses and physicians?

Diagnosis and treatment of pain are central components in the care of children with cancer. The aim of the present study was to compare the viewpoints of children and parents with those of professionals, on different aspects of pain in children with…

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.…

Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology

Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this…

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