Browse Items (209 total)

OBJECTIVE: To compare clinicians' ratings of therapeutic effectiveness when different trial end points were presented as percent reductions in relative compared with absolute risk and as numbers of patients treated to avoid one adverse outcome.…

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…

Childhood cancer can have detrimental effects on the psychosocial well-being of healthy siblings of children with cancer. The limited research done over the past 40 years has identified adjustment difficulties such as poor self-concept, depression,…

When general ward registered nurses (RN) receive patients from an intensive care unit (ICU) they report that much of their time in the initial phases revolves around meeting family needs (Farvis, 2002). Families experience anxiety when leaving the…

OBJECTIVE: Despite recognition that dying children and their families have unique palliative care needs, there has been little empirical inquiry of parent perspectives to improve the quality of end-of-life care and communication. The purpose of this…

OBJECTIVE: To identify priorities for quality end-of-life care from the parents' perspective. DESIGN: Anonymous, self-administered questionnaire. SETTING: Three pediatric intensive care units in Boston. PARTICIPANTS: Parents of children who had died…

OBJECTIVE: Mucopolysaccharidosis types IIIA through IIID (Sanfilippo syndrome) are caused by deficiencies of enzymes involved in the degradation of heparan sulfate. The onset and severity of the disease are highly variable. The purpose of this study…

OBJECTIVE: This study examined the relationships between pain characteristics, psychosocial factors, and quality of life among adolescents with chronic pain that existed for at least 3 months, either recurrently (ie, pain with pain-free intervals) or…

OBJECTIVE: To investigate parents' perspectives on the desirability, content, and conditions of a physician-parent conference after their child's death in the pediatric intensive care unit (PICU). STUDY DESIGN: Audio-recorded telephone interviews…

A child's pain is plastic and complex. In order to more effectively alleviate suffering, emphasis must shift from an exclusive focus on the source of tissue damage to a more comprehensive focus that includes factors that modulate pain. Evaluating a…

OBJECTIVE: Family members of critically ill patients report dissatisfaction with family-clinician communication about withdrawing life support, yet limited data exist to guide clinicians in this communication. The hypothesis of this analysis was that…

OBJECTIVE: To describe the reasons for eventual dissatisfaction among the families of patients who died in the intensive care unit (ICU), regarding both the assistance offered during the patient's stay in the hospital and the information received…

BACKGROUND: Public health benefits from research often rely on the use of data from personal medical records. When neither patient consent nor anonymisation is possible, the case for accessing such records for research purposes depends on an…

PURPOSE: Previous literature suggests that parents often wish to continue cancer-directed therapy for their children with incurable cancer. We assessed parents' experiences with treatment for their children with cancer and no realistic chance of…

This paper reports findings from a study conducted in one community health care trust where 62 members of the district nursing team (grades B-H) were interviewed. An adaptation of the critical incident technique was used to determine factors which…

Pain treatment is a crucial aspect in the care of children with cancer and there are many studies demonstrating inefficient pain treatment. In this study, questionnaires dealing with pain treatment of children with malignant diseases were sent to all…

Sleep disturbances are common in many progressive metabolic encephalopathies. The possible presence of disturbed sleep-wake behaviour in the lysosomal storage disorder aspartylglucosaminuria, has not been previously studied, however. The sleep-wake…

This follow-up study examined how bereaved couples' grief reactions change over time and how the quality of the marriage can predict these reactions for men and women. A group of 31 bereaved couples who 2 to 4 years earlier had lost an infant (…

1. This study aimed at analysing the grief and coping of mothers whose child had died under the age of 7 years. The paper describes the social support received as experienced by mothers. 2. Data were collected using a survey (n=91) and interviews…

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…

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…

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…

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…

CONTEXT: There is very little general evidence to support the clinical management, particularly diagnosis, of medically unexplained chronic pain (UCP) in children. OBJECTIVE: We sought to assess in children with UCP if clinical characteristics held…

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…

BACKGROUND: Parents' perceptions of the quality of information communicated by their child's oncologist about the child's cancer are not well understood. PROCEDURE: We conducted a cross-sectional survey of 194 parents of children with cancer…

BACKGROUND: Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We…

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…
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