Browse Items · Pediatric Palliative Care Library

Young people's satisfaction of transitional care in adolescent rheumatology in the UK

BACKGROUND: To examine the quality of transitional health care from the perspectives of young people with juvenile idiopathic arthritis (JIA) and their parents. METHODS: Adolescents with JIA and their parents were recruited from 10 major UK…

Development and preliminary validation of the 'Mind the Gap' scale to assess satisfaction with transitional health care among adolescents with juvenile idiopathic arthritis

BACKGROUND: To develop a scale to assess satisfaction with transitional health care among adolescents with a chronic illness and their parents. METHODS: The 'Mind the Gap' scale was developed using evidence from a previous needs assessment, in three…

Nurses' Perceptions of the Palliative Care Needs of Neonates With Multiple Congenital Anomalies

This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the…

Constipation in paediatric oncology

Constipation is a common problem encountered by many children during treatment for childhood cancer. It can be distressing and impact on the quality of life for the child. However, the advice and information they and their families receive can vary…

Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents

Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect…

At the crossroads: making the transition to hospice

OBJECTIVE: Previous studies reveal that many terminally ill patients never receive hospice care. Among those who do receive hospice, many enroll very close to the time of death. Nationally, between 1992 and 1998, the median length of stay at hospice…

Addressing transition to adult health care for adolescents with special health care needs

OBJECTIVE: To determine the factors associated with addressing the transition from pediatric to adult-oriented health care among US adolescents with special health care needs. METHODS: Data for 4332 adolescents, 14 to 17 years of age, from the…

Trends in transition from pediatric to adult health care services for young adults with chronic conditions

PURPOSE: The rationale underlying this study was the need to move the transition health services model from a theoretical framework to an empirically-based investigation. Thus, it was necessary to identify programs for youth with chronic or disabling…

Trends in the use of opioids at the end of life and the expected effects on hastening death

The aim of our study was to describe trends in opioid use and perceptions of having hastened the end of life of a patient. In 2005, a questionnaire was sent to 6860 physicians in The Netherlands who had attended a death. The response rate was 78%. In…

Satisfaction with information provided to Danish cancer patients: validation and survey results

OBJECTIVES: To validate five items (CPWQ-inf) regarding satisfaction with information provided to cancer patients from health care staff, assess the prevalence of dissatisfaction with this information, and identify factors predicting dissatisfaction.…

Treatment adherence of youth and young adults with and without a chronic illness

The present study was undertaken to explore the psychosocial functioning of young people with chronic illness, their beliefs about treatment adherence, difficulties with adherence and concerns about living with their illness. A small correlational…

What's Missing in Missing Data? Omissions in Survey Responses among Parents of Children with Advanced Cancer

Abstract Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. Objective: To describe patterns of missing data in the Pediatric Quality…

The relationship between grief adjustment and continuing bonds for parents who have lost a child

This article presents findings from a study on the impact of a child's death on parents. We explored the prominence and adaptiveness of parents' continuing bonds expressions, psychological adjustment, and grief reactions. A qualitative case study…

Sharing the care: the key-working experiences of professionals and the parents of life-limited children

AIMS: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). METHOD: Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric…

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…

Children's perceptions of physicians and medical care: two measures

1988

Tags: 1988, Adolescent, Backlog, Child, Child Health Services, Clinical Competence, Consumer Satisfaction, Humans, Journal Article, Journal of Pediatric Psychology, Lewis CC, Pantell RH, Physicians, Questionnaires, Rifkin L, Social Perception, Wolf MH

Using drugs to end life without an explicit request of the patient

A small proportion of deaths result from the use of drugs with the intention to hasten death without an explicit request of the patient. Additional insight into its characteristics is needed for evaluating this practice. In the Netherlands in 2001,…

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…

Factors explaining variability among caregivers in the intent to restrict life-support interventions in a pediatric intensive care unit

OBJECTIVE: To explore patient-related factors which influence the decisions of pediatric intensive care unit (ICU) caregivers to restrict life-support interventions. DESIGN: Cross-sectional survey. SETTING: A university-affiliated pediatric ICU.…

Variability in physician opinion on limiting pediatric life support

OBJECTIVE: We conducted this study to investigate how physicians in a pediatric intensive care unit (ICU) currently make decisions to withdraw and withhold life support. Consultation with the patient's primary caregiver often precedes decisions about…

Practitioner Empathy and the Duration of the Common Cold

Objective: This study's objective was to assess the relationship of empathy in medical office visits to subsequent outcomes,of the common cold. Methods: A total of 350 subjects >= 12 years of age received either a standard or enhanced physician visit…

The health and well-being of caregivers of children with cerebral palsy.

OBJECTIVE: Most children enjoy healthy childhoods with little need for specialized health care services. However, some children experience difficulties in early childhood and require access to and utilization of considerable health care resources…

Meeting the needs of parents around the time of diagnosis of disability among their children: evaluation of a novel program for information, support, and liaison by key workers

The comprehensive care team: a controlled trial of outpatient palliative medicine consultation

BACKGROUND: Little is known about the use of palliative care for outpatients who continue to pursue treatment of their underlying disease or whether outpatient palliative medicine consultation teams improve clinical outcomes. METHODS: We conducted a…

Can art therapy reduce death anxiety and burnout in end-of-life care workers? a quasi-experimental study

BACKGROUND: The need for empathy and the difficulties of coping with mortality when caring for the dying and the bereaved can cause psychological, emotional, and spiritual strain. OBJECTIVE: The aim of this study was to examine the effectiveness of…

Transition of care: health care professionals' view

There is much anxiety regarding the transfer of adolescents with chronic illness to adult services. Transfer of patients can be haphazard if the transition has not been planned. Problems and obstacles to transition have been identified and discussed…

An assessment of gender differences in the perception of benefit resulting from the loss of a child.

The current study focused on a sample of adults (N = 67) experiencing bereavement following the loss of a child. The Post Traumatic Growth Inventory (PTGI) was used to assess whether bereaved parents were able to perceive benefit from their trauma,…

Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity

OBJECTIVE: Anxiety and depression may have a major impact on a person's ability to make decisions. Characterization of symptoms that reflect anxiety and depression in family members visiting intensive care patients should be of major relevance to the…

Palliative care on the net: an online survey of health care professionals

A survey was conducted to explore Internet use by palliative care health professionals (HCP). The survey was placed on the World Wide Web with an underlying database, and palliative care HCP were invited to participate via a palliative-care-related…

Bereaved Jewish mothers of children who died of cancer: the relationship between the mother and the deceased child and the mother's perceived functioning

BACKGROUND: Coping with grief after a child's death is a complex and dynamic process. The Two-Track Model of Bereavement, which served as the theoretical framework for this study, examines biopsychosocial reactions to bereavement (track I) and…

Safety of polyethylene glycol 3350 for the treatment of chronic constipation in children

OBJECTIVES: To assess the clinical and biochemical safety profile of long-term polyethylene glycol 3350 (PEG) therapy in children with chronic constipation and to assess pediatric patient acceptance of PEG therapy. DESIGN: Prospective observational…

Training health professionals in caring for dying children and grieving families

In most industrialized countries today, the death of a child is a rare phenomenon. When it occurs, however, it is usually within a hospital setting, after the child has received complex and often long-term medical care aimed at curing or controlling…

Tags: 1997, Attitude Of Health Personnel, Backlog, Caregivers/psychology, Child, Child Health Services, Continuing/methods, Death, Death studies, Education, Family, Home Nursing, Humans, Journal Article, Medical, Palliative Care, Papadatou D, Parent caregivers, Questionnaires

Complementary and alternative therapy use in pediatric oncology patients with failure of frontline chemotherapy

BACKGROUND: The use of CAM by the relapsed pediatric oncology population has largely gone unstudied. The main objective of this study was to describe the prevalence of and change in CAM use in oncology patients for whom frontline therapy had failed.…

Palliative care education in an Australian undergraduate pharmacy curriculum: an exploratory descriptive study

The Adolescent Adjustment Profile (AAP) in comparisons of patients with obesity, phenylketonuria or neurobehavioural disorders

Psychosocial development in children with chronic disease is a key issue in paediatrics. This study investigated whether psychosocial adjustment could be reliably assessed with the 42-item Adolescent Adjustment Profile (AAP) instrument. The study…

Tags: 2008, Adjustment, Adolescent Transitions, Alm J, Backlog, Brodin U, Journal Article, Marcus C, Marild S, Neurobehavioural syndromes, Obesity, Olsson G, Phenylketonuria, Questionnaires, Rydelius PA

The development of an interdisciplinary outpatient clinic in specialist palliative care

The interdisciplinary team approach is essential in the assessment and management of the palliative care of patients and their families. An innovative approach has been developed to allow the interdisciplinary team to see patients and their families…

Characteristics of family conferences at the bedside versus the conference room in pediatric critical care

OBJECTIVE: To compare characteristics of family conferences at the bedside vs. the conference room in the PICU. DESIGN: Single-site, cohort survey study. SETTING: Thirty-three bed academic PICU in an urban setting. PARTICIPANTS: Ten PICU physicians…

Advice seeking and appropriate use of a pediatric emergency department

OBJECTIVES: To determine whether seeking advice prior to an unscheduled visit to a pediatric emergency department (PED) influences appropriate use of this setting for minor illnesses. DESIGN: Cross-sectional questionnaire survey. SETTING: The medical…

Mitochondrial disease: needs and problems of children, their parents and family. A systematic review and pilot study into the need for information of parents during the diagnostic phase.

OBJECTIVE: Firstly, this paper aims to systematically review the mitochondrial disease literature to identify studies assessing the needs and problems in the daily life of children with a mitochondrial disease and of their parents and family. The…

Survey of specialized tertiary care facilities for adults with congenital heart disease

BACKGROUND: Specialized tertiary care facilities developed in response to the increasing numbers of adults with congenital heart disease (CHD). Because this patient population comprises a relatively new area of specialized cardiovascular interest,…

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