Browse Items (204 total)

The narrative responses of 32 people with AIDS or cancer with survival prognoses of 6 months to a year to monthly interview questions about their daily lives were analysed with a team-based qualitative methodology. Two groups emerged: (a) a…

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…

This article investigates the relationships of child- and family-related variables with family function in families with children who have Duchenne muscular dystrophy. Child-related variables included level of disability (indicator: Barthel Index)…

INTRODUCTION: The outcomes of different types of transitions of young people with chronic diseases have been poorly investigated. OBJECTIVE: To evaluate and compare a structured transition from the paediatric diabetes services (PDS) into the adult…

AIM: To determine the prevalence and associations of self-reported and parent-reported pain in children with cerebral palsy (CP) of all severities., METHOD: Cross-sectional design using a questionnaire; analysis using ordinal regression. Children…

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…

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…

BACKGROUND: There is an increasing trend towards lower participation in questionnaire surveys. This reduces representativeness, increases costs and introduces particular challenges to longitudinal surveys, as researchers have to use complex…

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: 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…

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…

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…

BACKGROUND: Belgium's law on euthanasia allows only physicians to perform the act. We investigated the involvement of nurses in the decision-making and in the preparation and administration of life-ending drugs with a patient's explicit request…

BACKGROUND AND OBJECTIVE: Although there are general guidelines for adolescents with chronic illnesses making the transition from paediatric to adult health care, there are few studies which evaluate transition programs. This cross-sectional study…

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…

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…

The main purpose of this exploratory study was to identify the supportive care needs of women with lung cancer who attend an ambulatory regional cancer centre. Lung cancer has more than a physical impact on those who are diagnosed with the disease,…

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…

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…

GOALS OF WORK: The objective of the study is to assess the Palliative Care Outcome Scale (POS) as a potential audit tool within a specialist cancer centre. It also aims to answer the following questions: does the tool identify problem areas and…

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…

The impact of type 1 Gaucher disease and its therapy on health-related quality of life (QOL) was investigated and the results were compared with a Spanish adult normative group. PATIENTS AND METHODS: Between January 1998 and December 2002, a…

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…

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…

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…

We surveyed cognitively normal teens with and without chronic illness regarding the perceived physical and social impact of various chronic diseases including asthma. The overall physical impact of asthma was perceived equivalently to diabetes and…

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…

PURPOSE: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled…

BACKGROUND: A growing body of literature indicates that adolescents with chronic conditions are as likely, or more likely, to take risky behaviours than their healthy peers. The objective of this research was to assess whether adolescents with…
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