Browse Items · Pediatric Palliative Care Library

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…

Comparison of mothers and grandmothers physical and mental health and functioning within 6 months after child NICU/PICU death

Losing a child is devastating for parents and grandparents. Family and friends generally focus on comforting and supporting the bereaved parents, unintentionally ignoring the bereaved grandparents. Grandmothers and grandfathers often struggle with…

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…

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…

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…

Care goals and decisions for children referred to a pediatric palliative care program

OBJECTIVE: To describe goals of care for children with complex, life-limiting conditions and to assess the variables that may influence these goals. METHODS: Goals of care were elicited from the parents and children with complex, life-limiting…

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…

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…

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…

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…

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

Children, cancer, and nutrition--A dynamic triangle in review

The overall cure rate for cancer in childhood now exceeds 70% and is projected to reach 85% by the year 2010 in industrialized countries. Therefore, major attention is being placed on reducing the side effects of therapy. However, 85% of the world's…

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)…

Changes in mothers' basic beliefs following a child's bone marrow transplantation: the role of prior trauma and negative life events

This longitudinal study examined the relation between life stress and basic beliefs about self-worth and the benevolence and meaningfulness of the world among mothers of children undergoing bone marrow transplantation (BMT). One hundred mothers…

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 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…

Estimates of life expectancy by adolescents and young adults with congenital heart disease

OBJECTIVES: This study sought to determine what adolescents and young adults with moderate to complex congenital heart disease (CHD) believe their life span to be and to examine correlates of their beliefs. BACKGROUND: Patients with moderate to…

Assessing the clinical importance of symptomatic improvements. An illustration in rheumatology

OBJECTIVE: To estimate when a difference in disability symptoms is sufficiently large to be important to individual patients. DESIGN: Cross-sectional analysis of two groups: derivation set (n = 46) and validation set (n = 57). SETTING: The Arthritis…

Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic

Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died…

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

Effects of framing and level of probability on patients' preferences for cancer chemotherapy

Although most clinicians agree that patients should be informed about treatment alternatives, little is known about the way patients perceive probabilistic information about treatment outcomes and how it influences the choices they make. The purpose…

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…

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…

Do positive psychological states shed light on recovery from bereavement? Findings from a 3-year longitudinal study

The purpose of the current study was to document the course and 1-month post-bereavement predictors of both positive and negative psychological states in bereaved gay male caregivers for 3 years following the death of their partners. The results show…

Chronic illness, life style and emotional health in adolescence: results of a cross-sectional survey on the health of 15-20-year-olds in Switzerland

The objective was to evaluate the prevalence of chronic conditions (CC) in adolescents in Switzerland; to describe their behaviour (leisure, sexuality, risk taking behaviour) and to compare them to those in adolescents who do not have CC in order to…

Tags: 2003, Adolescent, Adolescent Transitions, Backlog, Chronic Disease/epidemiology, Cross-sectional Studies, European Journal of Pediatrics, Female, Health Status, Humans, Journal Article, Life Style, Male, Mental Health, Miauton L, Michaud PA, Narring F, Risk-Taking, Switzerland/epidemiology

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…

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…

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…

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…

Caregiving stress, immune function, and health: implications for research with parents of medically fragile children

Caregiving stress has been associated with considerable demands imposed on parents responsible for the physical and emotional care of medically fragile children. With health care advances in medicine and technology, there are a growing number of…

Tags: 2004, Backlog, Caregivers/psychology, Child, Chronic Disease, Health Status, Humans, Immunity, Issues In Comprehensive Pediatric Nursing, Journal Article, Kuster PA, Merkle CJ, New telomeres, Parents/psychology, Psychological/immunology, Stress

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

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…

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…

Adolescent girls' and boys' preferences for provider gender and confidentiality in their health care

PURPOSE: To assess the influence of demographic variables and health risk status on adolescents' preferences and actual receipt of services regarding provider gender, sharing a physician with parents, and private examinations. METHODS: Data from…

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…

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…

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…

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…

A meta-analytic review of benefit finding and growth

The authors conducted a meta-analysis to examine the relations of benefit finding to psychological and physical health as well as to a specific set of demographic, stressor, personality, and coping correlates. Results from 87 cross-sectional studies…

Tags: 2006, Adaptation, Affect, Attitude, Backlog, Health Status, Helgeson VS, Humans, Journal Article, Journal Of Consulting And Clinical Psychology, Parent caregivers, Post-Traumatic/psychology, Psychological, Quality Of Life/psychology, Reynolds KA, Stress Disorders, Tomich PL

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…

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