Browse Items · Pediatric Palliative Care Library

Youth With Chronic Conditions and Risky Behaviors: An Indirect Path

Purpose: To compare risk behaviors between youths living with a chronic condition (CC) and their healthy peers, controlling for condition severity. Methods: Data were drawn from the baseline wave of the GenerationFRee study (students aged 15-24 years…

Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood

PURPOSE: To assess the course of life of young adults who grew up with a chronic or life-threatening disease, and to compare their course of life with that of peers from the general population. Optimal transition from pediatric to adult health care…

The interaction of physical function and emotional well-being in rheumatoid arthritis--what is the impact on disease activity and coping?

OBJECTIVE: To evaluate the impact of the interaction of physical function and emotional well-being on disease-related parameters and coping with rheumatoid arthritis. METHODS: A cross-sectional survey among 177 RA patients included demographic and…

The impact on health-related quality of life from non-steroidal anti-inflammatory drugs, methotrexate, or steroids in treatment for juvenile idiopathic arthritis

OBJECTIVE: To assess and compare the impact of medication treatments on health-related quality of life (HRQOL), family function, and medical status in children with juvenile idiopathic arthritis (JIA). METHODS: Fifty-seven children diagnosed with JIA…

The impact of a palliative medicine consultation service in medical oncology.

This prospective study of consecutive patients describes the palliative medicine consult service in a tertiary level cancer center and its impact on patient care. All inpatients/outpatients referred to the Palliative Medicine Program in a 4-month…

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 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…

Surviving cancer in childhood can mean lifelong health issues

2006

Tags: 2006, Adolescent, Adult, Backlog, Cataract/etiology, Child, Follow-up Studies, Graft vs Host Disease, Health Status, Hearing Loss/etiology, Hematopoietic Stem Cell Transplantation/adverse effects, Humans, Journal Article, Lancet Oncology, Pain/etiology, PedPal Lit, Senior K, Survivors, Vision Disorders/etiology

Structural equation and log-linear modeling: a comparison of methods in the analysis of a study on caregivers' health

BACKGROUND: In this paper we compare the results in an analysis of determinants of caregivers' health derived from two approaches, a structural equation model and a log-linear model, using the same data set. METHODS: The data were collected from a…

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…

Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep

AIM: In childhood, severe psychomotor impairment (SPMI) is associated with profound sleep disturbances. With the help of newly developed and validated measures, we systematically assessed how much a child's sleep disturbance affects parental sleep…

Quality-adjusted life-years lack quality in pediatric care: a critical review of published cost-utility studies in child health

OBJECTIVES: Cost-utility analysis in which health benefits are quantified in terms of quality-adjusted life-years (QALYs) has now become the standard type of cost-effectiveness analysis. These studies are potentially influential in determining the…

Tags: 2005, Adolescent, Backlog, Brown J, Child, Coast J, Cost-Benefit Analysis/standards, Costs and Cost Analysis/standards, Decision Support Techniques, Griebsch I, Health Services Research/standards, Health Status, Humans, Infant, Journal Article, Pediatrics, Quality-Adjusted Life Years

Psychosocial Health Outcomes for Family Caregivers Following the First Year of Bereavement

The authors examined psychosocial outcomes following the first year of bereavement, for 51 family caregivers, including both spouses and offspring. Researchers assessed caregivers during palliative care and again during the second year of…

Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier: Psychological health in siblings who lost a brother or sister to cancer

Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study

PURPOSE: At some point in life, most people become caregivers to a terminally ill relative. Previous studies have shown that many caregivers experience psychological distress and declining physical health, but these studies have predominantly been…

Psychological distress in cancer patients assessed with an expert rating scale

The purpose of this study was to investigate psychosocial stress in a large sample of cancer patients using an expert rating scale. Specific aims were to analyse the relevance of setting variables (type of clinic, contact initiative, therapy) and…

Procedural sedation and analgesia in children

Procedural sedation and analgesia for children--the use of sedative, analgesic, or dissociative drugs to relieve anxiety and pain associated with diagnostic and therapeutic procedures--is now widely practised by a diverse group of specialists outside…

Tags: 2006, Analgesia/classification, Analgesics/administration & dosage/classification/pharmacology, Backlog, Child, Conscious Sedation/classification, dosage/classification/pharmacology, Green SM, Health Status, Humans, Hypnotics and Sedatives/administration &, Infant, Journal Article, Krauss B, Lancet, Pediatrics/standards, PedPal Lit, Practice Guidelines, Preschool

Posttraumatic growth in treatment-seeking female assault victims

The importance of measuring growth outcomes following a traumatic event has been highlighted in recent literature (e.g., Linley, Joseph: Journal of Traumatic Stress 17:11-21, 2004). Although reports of growth are abundant, the relationship between…

Physical and mental health of mothers caring for a child with Rett syndrome

OBJECTIVES: Our goal was to investigate the physical and mental health of mothers who care for a child with Rett syndrome. METHODS: We assessed maternal physical and mental health by using the SF-12 version 1 physical component summary and mental…

Perceptions on good death among parents of pediatric patients with hematology-oncology disease in advance

Background: It is difficult to perceive the preparation of a good death for children because of its social and cultural issues. Among the children with serious diseases, they can be alienated and the whole processes are done by the decision of the…

Parental stress and burden following traumatic brain injury amongst children and adolescents.

PRIMARY OBJECTIVES: To assess parental stress following paediatric traumatic brain injury (TBI), and examine the relationship between self-reported problems, parental stress and general health. RESEARCH DESIGN: Parents of 97 children admitted with a…

Parental perception of cold extremities and other accompanying symptoms in children with cerebral palsy

Cold extremities have been noted in non-walking children with cerebral damage compared with healthy controls. Whether this is a general problem in children with cerebral palsy (CP) and associated with other symptoms is unknown. This study describes…

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…

One month after diagnosis: quality of life, coping and previous functioning in siblings of children with cancer

BACKGROUND: The aim of the present study is to describe the quality of life (QoL) of siblings of children with cancer and to predict it according to their health before the diagnosis of cancer in the ill child and their ways of coping with the…

My Life Is a Mess but I Cope': An Analysis of the Language Children with Life-limiting and Life Threatening Illnesses Use to Describe their Own Condition

Background/aims: Children with life-limiting and life-threatening conditions are rarely involved in research. Engaging them directly enables them to express the meaning of their condition in their own words. This study aimed to explore the language…

Mortality in parents after death of a child in Denmark: A nationwide follow-up study.

BACKGROUND: Little is known about the effect of parental bereavement on physical health. We investigated whether the death of a child increased mortality in parents. METHODS: We undertook a follow-up study based on national registers. From 1980 to…

Medical, surgical, and health outcomes of gastrostomy feeding

A prospective controlled study with repeated measures before and after surgery examined the medical, surgical, and health outcomes of gastrostomy for children with disabilities at a tertiary paediatric referral centre in the North Thames area, UK.…

Long-term effects of the death of a child on parents' adjustment in midlife

The death of a child is a traumatic event that can have long-term effects on the lives of parents. This study examined bereaved parents of deceased children (infancy to age 34) and comparison parents with similar backgrounds (n = 428 per group)…

Life Transitions Of Adolescents And Young Adults With Life-limiting Conditions

Aims:
A systematic review was conducted to appraise and classify evidence related to the life transitions of adolescents and young adults with life-limiting conditions.

Methods:
The databases searched were MEDLINE, CINAHL, PsycINFO, CancerLit, and…

Initial development and validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD).

This paper reports the development and validation of a disease-specific measure of health status and well-being of children with severe cerebral palsy (CP). The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) was…

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…

Hunger disease

This paper examines three aspects of hunger disease: the effect of initial fat stores on macronutrient fuel selection during total starvation (no energy) and how it influences survival; the effects of different rates of weight loss on tissue and body…

Hidden consequences of success in pediatrics: parental health-related quality of life--results from the Care Project

CONTEXT: The number of parents who care for a chronically ill child is increasing. Because of advances in medical care, parental caring tasks are changing. A detailed description of parental health-related quality of life will add to the…

Health-related quality of life in children with Friedreich ataxia

The use of health-related quality of life scales as outcome measures in clinical trials is increasing. Although such measures have been validated in adults with Friedreich ataxia, they have not been studied in children with this disorder. The…

Tags: 2010, Adolescent Child Female, alertness, Fatigue, Friedman L S, Friedreich ataxia, Friedreich Ataxia/pp [Physiopathology], Friedreich Ataxia/px [Psychology], Health Status, Humans, Lynch D R, Male, Myers L M, Paulsen E K, Pediatric Neurology, Quality Of Life/px [psychology], scale development, tool development

Health-related quality of life among child and adolescent survivors of childhood cancer.

PURPOSE: The main objective was to compare parent-reported health-related quality of life (HRQL) of child and adolescent survivors of childhood cancer to that of controls who had no history of cancer. METHODS: We assessed HRQL of 800 child 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…

Health and sleep problems in Cornelia de Lange Syndrome: a case control study

BACKGROUND: Self-injury, sleep problems and health problems are commonly reported in Cornelia de Lange Syndrome (CdLS) but there are no comparisons with appropriately matched participants. The relationship between these areas and comparison to a…

Gender-specific factors in the utilization of medical services during adolescence

Although adolescents suffer from a variety of complaints, they do not often consult a doctor. Following a high rate of medical consultation during infancy and childhood, the rate dramatically decreases at the age of 10 and increases again around the…

Experiencing transitions: an emerging middle-range theory

Changes in health and illness of individuals create a process of transition, and clients in transition tend to be more vulnerable to risks that may in turn affect their health. Uncovering these risks may be enhanced by understanding the transition…

Evaluation of health status and health-related quality of life in a cohort of Italian children following treatment for a primary brain tumor

BACKGROUND: This study is a pilot experience aiming to investigate the compliance of an institutional cohort of Italian children treated for a malignant disease and their families in completing the health utilities index2, (HUI2) and the…

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