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…

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…

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…

Awareness of pediatric palliative care among health care workers

Introduction: In order to develop such a relatively new type of medical care in Ukraine, as pediatric palliative care, first of all, qualified medical workers are needed. The aim: to assess the awareness of pediatric palliative care among healthcare…

Tags: 2018, Attitude To Health, Child, Clinical Competence, Detsyk OZ, Education, Health Care Personnel, Human, Melnyk RM, October 2018 List, Palliative Therapy, Pediatrics, Psychology, Questionnaire, September 2018 List, Stovban IV, Ukraine, Wiadomosci lekarskie, Zolotarova ZM

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…

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…

Chronic musculoskeletal and other idiopathic pain syndromes

Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative study

Introduction: Effective communication in pediatric palliative cancer care is an important aspect of practice to enhance patient- and family-centered care, and to optimize decision-making. However, little is known about communication preferences…

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…

Coping with chronic pain

Many models of pain give coping an important role in understanding adaptation to chronic pain. Among these, Lazarus and Folkman's cognitive-phenomenological model of stress and coping provides a theoretical framework to conceptualise stress phenomena…

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.…

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…

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…

Do parents want to be present during invasive procedures performed on their children in the emergency department? A survey of 400 parents

STUDY OBJECTIVES: No large study has addressed whether parents want to be present when invasive procedures are performed on their children in the emergency department. We conducted a survey to address this question. METHODS: The study used a…

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…

Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care

Background: Individuals with cystic fibrosis (CF) face the challenges of managing a chronic, progressive disease. While palliative care is a standard of care in serious illnesses, there are no guidelines for its incorporation into CF care. Patients…

Fifteen-minute consultation: Not the whole story-considering children's spirituality and advance care planning

In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of…

Frequency and determinants of formal respite service use among caregivers of children with cerebral palsy in Ontario

OBJECTIVE: To describe the use of formal respite services among caregivers of children with cerebral palsy in Ontario and discuss the factors that may contribute to respite use and non-use. METHODS: A total of 468 caregivers were interviewed 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…

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…

Half the family members of intensive care unit patients do not want to share in the decision-making process: a study in 78 French intensive care units

OBJECTIVE: To evaluate the opinions of intensive care unit staff and family members about family participation in decisions about patients in intensive care units in France, a country where the approach of physicians to patients and families has been…

Health care information sources for adolescents: age and gender differences on use, concerns, and needs

OBJECTIVES: To assess adolescents' sources of health care information, explore beliefs about topics which health care providers should address and about those which have been addressed, and identify topics that are embarrassing for adolescents to…

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…

Health counseling in adolescent preventive visits: effectiveness, current practices, and quality measurement

Most morbidity and mortality among adolescents results from their participation in health-compromising behaviors. Recent guidelines for clinical adolescent preventive services recommend that primary care clinicians routinely screen for and counsel…

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…

Hospital staff and family perspectives regarding quality of pediatric palliative care.

BACKGROUND: Development of a pediatric palliative care program was preceded by a needs assessment that included a staff survey and family interviews regarding improving pediatric palliative care. METHODS: Four hundred forty-six staff members and…

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…

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…

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

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

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…

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…

Informing social work practice through research with parent caregivers of a child with a life-limiting illness

Pediatric palliative care is an evolving field of practice in social work. As such, research plays a critical role in informing best social work practices in this area. For parents, caring for a child with a life-limiting illness (LLI) is a stressful…

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…

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…

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…

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,…

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

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…

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