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…
OBJECTIVES: We sought to determine the long-term clinical and biochemical outcome of newborns with mitochondrial cytopathies (MCs) and to identify possible prognostic factors that may modify the course of these diseases. MATERIAL AND METHODS:…
AIM: The purpose of this study was to survey symptoms in children/young people with progressive cancer and identify which are the most important and which are the most difficult to treat effectively. PATIENTS AND METHODS: This was a questionnaire…
OBJECTIVE: Juvenile GM2 gangliosidosis is a group of inherited neurodegenerative diseases caused by deficiency of lysosomal beta-hexosaminidase resulting in GM2 ganglioside accumulation in brain. The purpose of this study was to delineate the natural…
BACKGROUND: Parental feelings of guilt can be a serious problem after the death of a child to a malignancy. This study identified predictors of feelings of guilt in parents during the year after a child's death. METHODS: The Swedish Cause of Death…
BACKGROUND: As a prelude to establishing a Pediatric Palliative Care Program, we solicited information from families about their experiences and their suggestions for improving the quality of end-of-life care. Participants were English- and…
BACKGROUND: Although some studies suggest that parenthood is associated with a reduced suicide risk, the impact of children on parental suicide has rarely been documented. METHODS: This study investigates the impact of parental status on the risk of…
We examined 26 individuals with clinical and electron microscopic signs of late infantile neuronal ceroid lipofuscinosis (LINCL). In 22 cases, we found both pathogenic alleles. Sixteen patients exclusively carried either one or a combination of the…
In this paper, we provide a brief update of diagnostic considerations and biochemical phenotype in L-amino acid decarboxylase deficiency. We review clinical features and outcome data in 11 affected patients, including 7 previously unreported cases.…
BACKGROUND: It has been debated whether psychological stress causes cancer, but the scientific evidence remains contradictory. The objective of this study was to investigate whether the death of a child is related to cancer risk in bereaved parents.…
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%)…
Palliative care surveys often rely on bereaved family members to act as proxies to provide information on patient care at the end of life, after the patient's death. However, when comparing bereaved family members' assessments with those of the…
The place of death of cancer patients has become an important theme in UK cancer and palliative care policy. This paper examines the place of death preferences of 41 terminally ill cancer patients and 18 of their informal carers, living in the…
BACKGROUND: Little is known about the effect of parental bereavement on physical health. We investigated whether the death of a child increased mortality in parents. METHODS: We undertook a follow-up study based on national registers. From 1980 to…
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…
Despite the ethical codes guiding bereavement research, few studies have been conducted to evaluate the perceived stress experienced by the bereaved, and to explore which methodologies cause least distress. This article investigates how bereaved and…
The purpose of this study was to examine the symptom prevalence, characteristics, and distress of children dying in hospital. Symptoms during the last week of life were obtained from the medical records. Symptoms and their characteristics during the…
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…
BACKGROUND: Some consider the loss of a child as the most stressful life event. When the death is caused by a malignancy, the parents are commonly exposed not only to their own loss, but also to the protracted physical and emotional suffering of the…
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…
OBJECTIVE: First, to investigate the patterns of functional ability, depressive feelings, and social support in early stage rheumatoid arthritis (RA) patients. Second, to demonstrate the stress buffering effect of social support. Social support is…
The Diana Children's Community Teams (DCCTs), a new nurse-led service funded by the Department of Health, were established to provide care in the community as an alternative to hospital for children with life-threatening/life-limiting illnesses and…
Suicidal behaviors of parents bereaved by a child's suicide have received considerable attention by researchers, but deaths by other violent causes have not. We observed 175 bereaved parents for five years following three types of violent death:…
PRIMARY OBJECTIVES: To assess parental stress following paediatric traumatic brain injury (TBI), and examine the relationship between self-reported problems, parental stress and general health. RESEARCH DESIGN: Parents of 97 children admitted with a…
The purpose of the current study was to document the course and 1-month post-bereavement predictors of both positive and negative psychological states in bereaved gay male caregivers for 3 years following the death of their partners. The results show…
BACKGROUND: Wilson's disease associated with severe liver disease is effectively cured by orthotopic liver transplantation (OLT). However, there are also anecdotal reports of improved or resolved neurologic symptoms after OLT in patients with stable…
BACKGROUND: This paper examines the degree to which symptoms of anxiety and depression at age 14 years are associated with early childhood experience of maternal anxiety and depression, poverty, and mother's marital relationship distress and…
OBJECTIVE: To systematically review the accuracy of physicians' clinical predictions of survival in terminally ill cancer patients. DATA SOURCES: Cochrane Library, Medline (1996-2000), Embase, Current Contents, and Cancerlit databases as well as hand…
OBJECTIVES: The objective of this study is to investigate the relationship between a physician's subjective mortality prediction and the level of confidence with which that mortality prediction is made. DESIGN AND PARTICIPANTS: The study is a…
BACKGROUND: Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some…
BACKGROUND: This longitudinal study investigated the course and predictors of benefit finding among 144 mothers of children undergoing hematopoietic stem cell transplantation (HSCT), a severely stressful and life-threatening medical procedure.…
A significant proportion of children requiring palliative care have neurodegenerative life-threatening illnesses (NLTIs). While most of their care is provided at home by their families over many years, there is a paucity of research examining…
The provision of bereavement support for parents who have lost a child is based on the assumption that it will lead to better subsequent adjustment. To determine the validity of this assumption, a systematic review of studies was undertaken, looking…
