Browse Items · Pediatric Palliative Care Library

A community survey of children with severe intellectual disability and their families: psychological adjustment, carer distress and the effect of respite care

The present paper describes a cross-sectional study of the psychosocial adjustment of 143 children with severe disability and their families identified from a regional case register for children with special needs. Thirty-eight per cent of the…

A computerized school-based health assessment with rapid feedback to improve adolescent health

Adolescent health problems are often undetected in physicians' offices. The Dartmouth Primary Care Cooperative Information Project has developed a validated and reliable approach to identify adolescent health problems and initiate education in a…

A longitudinal method of teaching pediatric palliative care to interns: preliminary findings regarding changes in interns' comfort level

OBJECTIVE: A longitudinal pediatric palliative care curriculum was introduced into the pediatric residency program at the University of California, Los Angeles. The present study explores the possible effects of this curriculum on the interns'…

A multi-dimensional approach to the transition of children with developmental disabilities into young adulthood: the acquisition of adult social roles

PURPOSE: To test the hypothesis that the difficulties young adults with developmental disabilities have in obtaining adult social roles are not inevitable consequences of their childhood impairment. We used the conceptual framework of the…

A population-based nationwide study of parents' perceptions of a questionnaire on their child's death due to cancer.

A proposed nationwide postal questionnaire to Swedish parents who had lost a child due to cancer between 1992 and 1997 was denied approval by the local ethics committee. However, a pilot study to assess the harm and benefit of the questionnaire was…

A prospective comparative study of 2540 infants and children with newly diagnosed idiopathic thrombocytopenic purpura (ITP) from the Intercontinental Childhood ITP Study Group

OBJECTIVE: To analyze prospectively the impact of age at diagnosis in childhood idiopathic thrombocytopenic purpura (ITP). STUDY DESIGN: International registry from June 1997 to May 2001, with analysis of data from baseline and 6-month-follow-up…

A revision of the intensity of treatment rating scale: classifying the intensity of pediatric cancer treatment

A survey of IRB process in 68 U.S. hospitals

PURPOSE: To compare IRB processes in 68 U.S. hospitals for the same multicenter study. DESIGN: Survey of IRB processes in 68 U.S. hospitals during 2001-2002. METHODS: Requirements of IRB submission including type and duration of review and…

A theory of healing in the aftermath of youth suicide. Implications for holistic nursing practice

The purpose of this family-focused, grounded-theory study was to develop a substantive theory that explains how individual family members heal in the aftermath of youth suicide. Individual healing following youth suicide is conceptualized as a…

Active and passive coping strategies in chronic pain patients

This study assessed the validity of active and passive coping dimensions in chronic pain patients (n = 76) using the Coping Strategies Questionnaire and the Vanderbilt Pain Management Inventory. The validity of active and passive coping dimensions…

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…

Adolescents' reports of parental knowledge of adolescents' use of sexual health services and their reactions to mandated parental notification for prescription contraception

CONTEXT: Legislation has been proposed that would mandate parental notification for adolescents younger than 18 years (minors) obtaining prescription contraception from federally funded family planning clinics. OBJECTIVE: To determine the extent to…

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…

African American and Latino bereaved parent health outcomes after receiving perinatal palliative care: A comparative mixed methods case study

Death of one's infant is devastating to parents, negatively impacting couple relationships and their own health. The impact of a prenatally diagnosed life-limiting fetal condition (LLFC) on parents of minority status is unclear. This comparative…

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,…

Anorexia/cachexia-related quality of life for children with cancer

BACKGROUND: Anorexia is a common symptom in patients with cancer, which can lead to poor tolerance of treatment and can contribute to cachexia in extreme cases. Children with advanced-stage cancer are especially vulnerable to malnutrition resulting…

Asking parents unaskable questions

2004

Tags: 2004, Attitude To Death, Backlog, Bereavement, Biomedical and Behavioral Research, Burnell RH, Child, Data Collection, Death and Euthanasia, Ethics, Humans, Interviews As Topic, Journal Article, Lancet, O'Keefe M, Parents/psychology, Questionnaires, Research, Sweden

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 the impact of pediatric epilepsy and concomitant behavioral, cognitive, and physical/neurologic disability: Impact of Childhood Neurologic Disability Scale

Epilepsy has a significant impact on a child's life, the extent to which is based on four factors: epilepsy, cognition, behavioral, and physical/neurologic function. This study evaluates the ability of the 44-item Impact of Childhood Neurologic…

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…

Attachment to God as a Mediator of the Relationship Between Religious Affiliation and Adjustment to Child Loss

Objectives: The loss of a child is a traumatic life event. While bereavement research has examined the roles of both interpersonal attachment and religiosity in coping with loss, only a handful of studies have addressed the concept of attachment to…

Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe

The objective of this study was to explore the current practice and attitudes of pediatric cardiologists in the United States and Europe on the transfer and transition of children with congenital heart disease (CHD). A survey among pediatric…

Availability and use of palliative care and end-of-life services for pediatric oncology patients

PURPOSE: Palliative care prevents or relieves the symptoms caused by life-threatening medical conditions. Previous surveys have shown both underuse and lack of availability of these services for children with cancer throughout North America. We…

Barriers to conducting advance care discussions for children with life-threatening conditions.

BACKGROUND AND OBJECTIVE: Advance care discussions (ACD) occur infrequently or are initiated late in the course of illness. Although data exist regarding barriers to ACD among the care of adult patients, few pediatric data exist. The goal of this…

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…

Bereavement outcomes for parents who lose a child to cancer: are place of death and sex of parent associated with differences in psychological functioning?

Despite increasing cure rates, cancer is a leading cause of non-accidental death in childhood. Models of psychosocial care in pediatric cancer may therefore need to address bereavement planning for a 'minority group' of parents (approximately 25%)…

Brief report: psychosocial functioning of fathers as primary caregivers of pediatric oncology patients

OBJECTIVE: To evaluate the psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. METHODS: Fathers who identified themselves as the primary medical caregivers were given a packet of questionnaires, including the…

CAMHS liaison: supporting care in general paediatric settings

Increasing numbers of children and young people with mental health problems are being cared for in general paediatric settings, presenting a challenge to nurses who do not have mental health nursing qualification and experience. A survey of nurses in…

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…

Can the needs of the critically ill child be identified using scenarios? Experiences of a modified Delphi study

The Delphi technique enables the structuring of group opinion and discussion using a survey approach, maintaining the anonymity of panel members and preventing contamination of individual responses through peer pressure. The Delphi technique was used…

Tags: 1999, Backlog, Child, Clifford CM, Critical Illness/nursing, Delphi Technique, Endacott R, Evaluation Studies, Health Services Needs and Demand/statistics & numerical data, Humans, Intensive Care/statistics & numerical data, Journal Article, Journal Of Advanced Nursing, Pilot Projects, Questionnaires, Reproducibility of Results, Tripp JH

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…

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…

Chemotherapy-related fatigue in childhood cancer: correlates, consequences, and coping strategies

The aim of this research is to examine the experience and impact of chemotherapy-related fatigue in recently diagnosed pediatric oncology patients. A repeated-measures, within-subjects, mixed (quantitative plus qualitative) design was used to…

Tags: 2008, Adaptation, Antineoplastic Agents/adverse effects, Backlog, Child, Davies B, Fatigue/chemically induced, Friedman D, Gudmundsdottir M, Humans, Journal Article, Journal Of Pediatric Oncology Nursing, McCarthy P, Neoplasms/drug therapy/psychology, Parents, Psychological, Questionnaires, Whitsett SF

Children with cancer talk about their own death with their families

In this study we looked at children dying from progressive malignant diseases and their families, to see whether they discussed the child's impending death together. We also looked at what factors might influence this. We questioned staff in the…

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

Clinical and biochemical spectrum of D-bifunctional protein deficiency

OBJECTIVE: D-bifunctional protein deficiency is an autosomal recessive inborn error of peroxisomal fatty acid oxidation. Although case reports and small series of patients have been published, these do not give a complete and balanced picture of the…

Communicating the benefits of chronic preventive therapy: does the format of efficacy data determine patients' acceptance of treatment?

Patients' informed acceptance of chronic medical therapy hinges on communicating the potential benefits of drugs in quantitative terms. In a hypothetical scenario of treatment initiation, the authors assessed how three different formats of the same…

Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions

Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other…

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.…

Confidentiality in health care. A survey of knowledge, perceptions, and attitudes among high school students

OBJECTIVE--To assess adolescent knowledge, perceptions, and attitudes about health care confidentiality. DESIGN--Anonymous self-report survey with 64 items addressing confidentiality issues in health care. SETTING--Rural, suburban, and urban high…

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