Browse Items · Pediatric Palliative Care Library

Advance care planning in adolescents with cystic fibrosis: A quality improvement project

INTRODUCTION: Advance care planning (ACP), though recommended, has not been studied in adolescents with cystic fibrosis (CF). This quality improvement project engaged adolescents with advanced CF disease in ACP and assessed patient and CF provider…

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…

Human research ethics committees: issues in palliative care research

Palliative care research is fraught with many difficulties. There are challenges associated with conducting research with vulnerable patients and families, difficulties with obtaining informed consent, and methodological complexities. Thoughtful…

Long term posttraumatic growth after breast cancer: prevalence, predictors and relationships with psychological health

This study evaluated the prevalence and predictors of long term posttraumatic growth (PTG) after breast cancer, and relationships of PTG with psychological health in a random sample of 307 currently disease-free women 5-15 years after diagnosis. This…

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…

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…

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…

Individualised advance care planning in children with life-limiting conditions

INTRODUCTION: In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to…

Hope and prognostic disclosure

PURPOSE: Physicians sometimes selectively convey prognostic information to support patients' hopes. However, the relationship between prognostic disclosure and hope is not known. PATIENTS AND METHODS: We surveyed 194 parents of children with cancer…

Chronic musculoskeletal and other idiopathic pain syndromes

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…

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…

Measuring the quality of dying

2001

Tags: 2001, Attitude Of Health Personnel, Attitude To Death, Attitude To Health, Backlog, Chronic/psychology, Family/psychology, Health Services Research/methods/standards, Human, Journal Article, Journal of Palliative Medicine, Kidney Failure, Moss AH, Quality Of Health Care, Quality Of Life, Research Design/standards, Terminal Care/psychology/standards

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…

Assessing preferences about the DNR order: does it depend on how you ask?

Despite increasing emphasis on advance directives, there has been little methodologic work to assess preferences about the "do not resuscitate" (DNR) order. This developmental work assessed, in a non-patient group, the performance of a…

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…

Missed opportunities-adolescents with a chronic condition (insulin-dependent diabetes mellitus) describe their cigarette-smoking trajectories and consider health risks

AIM: To enhance our knowledge on why adolescents with a chronic condition (insulin-dependent diabetes mellitus, IDDM) choose to smoke despite possible awareness of health risks. METHODS: Twelve patients aged 15-20 with IDDM who smoked cigarettes…

Health care transition: youth, family, and provider perspectives

OBJECTIVE: This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care…

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…

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…

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,…

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

Dealing with missing data in a multi-question depression scale: a comparison of imputation methods

BACKGROUND: Missing data present a challenge to many research projects. The problem is often pronounced in studies utilizing self-report scales, and literature addressing different strategies for dealing with missing data in such circumstances is…

Mapping the journey of cancer patients through health care system. Part 1: developing the research question

This is the first in a series of articles relating results from research which constructed a complete history of interactions with the health care system from available data sources for all patients diagnosed in 1990 with primary breast, colorectal,…

Living with cerebral palsy and tube feeding: A population-based follow-up study

OBJECTIVES: To assess the impact of surgically placed feeding tubes on children with severe cerebral palsy (CP) and their families and to determine the survival of these children after initiation of tube feeding (TF). METHODS: Virtually all children…

Coping, self-efficacy and psychiatric history in patients with both chronic widespread pain and chronic fatigue

OBJECTIVE: To investigate the relationship of coping style and self-efficacy to functional impairment in a group of patients with both chronic widespread pain (CWP) and chronic fatigue, as well as the possible mediating role of psychiatric diagnosis.…

Improving transition: a qualitative study examining the attitudes of young people with chronic illness transferring to adult care

Transition is a process that attends to the medical, psychosocial and educational needs of young people as they transfer to adult-orientated care. With a growing population of adolescents surviving with chronic illness well into adulthood, it is…

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…

Life threatening illness and hospice care.

A retrospective study was undertaken of 25 families and their 26 ill children attending the first children's hospice in the United Kingdom. The study examined the family's perceptions of the care offered and the impact of chronic and life threatening…

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…

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…

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'…

Coordinating the norms and values of medical research, medical practice and patient worlds-the ethics of evidence based medicine in orphaned fields of medicine

Evidence based medicine is rightly at the core of current medicine. If patients and society put trust in medical professional competency, and on the basis of that competency delegate all kinds of responsibilities to the medical profession, medical…

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

I am not the kind of woman who complains of everything': illness stories on self and shame in women with chronic pain

In this study, we explore issues of self and shame in illness accounts from women with chronic pain. We focused on how these issues within their stories were shaped according to cultural discourses of gender and disease. A qualitative study was…

Tags: 2004, Adult, Attitude To Health, Backlog, Chronic Disease, Female, Feminism, Humans, Isaksen LW, Journal Article, Malterud K, Middle Aged, Narration, Pain/psychology, Social science & medicine, Werner A

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…

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…

Disease trajectories and ACT/RCPCH categories in paediatric palliative care

The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to…

How Parents And Physicians Experience End-of-life Decision-making For Children With Profound Intellectual And Multiple Disabilities.

BACKGROUND:
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions.
AIMS:
The objective of this research…

Browse Items (80 total)