Browse Items · Pediatric Palliative Care Library

Structural equation modeling with longitudinal data: strategies for examining group differences and reciprocal relationships

This article describes the use of structural equation modeling with latent variables to examine group differences and test competing models about cause-effect relationships in passive longitudinal designs. This approach is compared with several other…

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,…

Pediatric Functional Independence Measure: Clinical trials with disabled and nondisabled children.

Facilitating the care of terminally ill children.

Life-threatening illness is fortunately rare in children. Some children, however, will need palliative care for symptom control; psychological support may be needed by the child and the child's family; and families may require help with decisions…

Tags: 1996, Adolescent, Adult, Backlog, Case Report, Child, Child Health Services, Female, Finlay I, Human, Infant, Journal Article, Journal of Pain and Symptom Management, Longitudinal Studies, Male, McQuillan R, Palliative Care, Preschool, Terminal Care

How children die in hospital.

A retrospective analysis was performed to describe the course of terminal care provided to dying hospitalized children in terms of symptom assessment and management, and communication and decision-making, at the end of life. Seventy-seven of 236…

Interrater agreement and stability of the Functional Independence Measure for Children (WeeFIM): Use in children with developmental disabilities.

OBJECTIVE: Examination of the interrater agreement and stability of ratings obtained using the Functional Independence Measure for Children (WeeFIM) in a sample of children with developmental disabilities. DESIGN: A relational design was used in…

Magnetic resonance spectroscopy in Niemann-Pick disease type C: Correlation with diagnosis and clinical response to cholestyramine and lovastatin.

Niemann-Pick type C is an autosomal-recessive, neurovisceral storage disorder that results from defective cholesterol esterification. Cholesterol-lowering agents have been demonstrated to decrease hepatic lipids in Niemann-Pick type C patients. The…

Tay-Sachs disease: Progression of changes on neuroimaging in four cases.

The neuroradiological findings in four patients with Tay-Sachs disease are described in three phases of the clinical course. The basal ganglia and cerebral white matter show low density on computed tomography and high signal intensity on T2-weighted…

The posttraumatic growth inventory: measuring the positive legacy of trauma.

The development of the Posttraumatic Growth Inventory, an instrument for assessing positive outcomes reported by persons who have experienced traumatic events, is described. This 21-item scale includes factors of New Possibilities, Relating to…

Neuronal ceroid-lipofuscinosis: A clinical and morphological study of 19 patients.

We report on clinical, electrophysiological, neuroradiological, and morphological data from 19 patients with different types (late infantile, juvenile, and adult) of neuronal ceroid-lipofuscinosis (NCL), observed in the last 10 years at the…

Niemann-Pick disease type C: Two cases and an update.

We describe two patients with juvenile-onset Niemann-Pick disease type C (NPC) to illustrate the variable neurologic features of this condition. One presented with hypersplenism at age 10 and was misdiagnosed with Gaucher disease. He developed…

Outcome at age 4 years in offspring of women with maternal phenylketonuria: the Maternal PKU Collaborative Study

CONTEXT: Untreated maternal phenylketonuria (PKU) increases risk for developmental problems in offspring. The extent to which this risk is reduced by maternal dietary therapy at various stages of pregnancy is not known. OBJECTIVE: To determine…

Protecting adolescents from harm. Findings from the National Longitudinal Study on Adolescent Health

CONTEXT: The main threats to adolescents' health are the risk behaviors they choose. How their social context shapes their behaviors is poorly understood. OBJECTIVE: To identify risk and protective factors at the family, school, and individual levels…

Niemann-Pick disease type C: From bench to bedside.

The CES-D Scale: a self-report depression scale for research in the general population.

1977

Tags: 1977, Applied Psychological Measurement, Backlog, Journal Article, Longitudinal Studies, Radloff LS

Measuring marital quality: A critical look at the dependent variable.

1983

Tags: 1983, Backlog, Journal Article, Journal Of Marriage And The Family, Longitudinal Studies, Norton R

A global measure of perceived stress.

Life threatening illness and hospice care.

A retrospective study was undertaken of 25 families and their 26 ill children attending the first children's hospice in the United Kingdom. The study examined the family's perceptions of the care offered and the impact of chronic and life threatening…

An approach to longitudinal studies in a community: The Framingham Study.

1963

Tags: 1963, Annals Of The New York Academy Of Sciences, Backlog, Dawber TR, Heart Diseases, Journal Article, Kannel WB, Longitudinal Studies, Lyell LP

Juvenile neuronal ceroid lipofuscinosis (JNCL): quantitative description of its clinical variability

The clinical courses of 17 JNCL patients were analyzed retrospectively with the use of a simple, disease-specific scoring system. The mean observation period was 14 years (range 8-18 years). Scores of 0 (maximal dysfunction) to 3 (normal function)…

Tags: 1988, Acta Paediatrica, Adolescent, Adult, Albani M, Backlog, Child, Female, Follow-up Studies, Humans, Journal Article, Kohlschutter A, Laabs R, Longitudinal Studies, Male, Neuronal Ceroid-Lipofuscinoses/diagnosis, Retrospective Studies

Circumplex Model VII: Validation studies and FACES III.

This paper reviews some of the recent empirical studies validating the Circumplex Model and describes the newly developed self-report measure, FACES III. Studies testing hypotheses derived from the Circumplex Model regarding the three dimensions of…

Tags: 1986, Adaptation, Backlog, Communication, Cultural Characteristics, Family, Family Process, Humans, Journal Article, Longitudinal Studies, Marriage, Models, Olson DH, Psychological, Psychological Tests, Research

Combat experience and emotional health: impairment and resilience in later life

War's influence on emotional health includes potential psychological gains as well as losses. In a sample of 149 veterans from longitudinal samples at the Institute of Human Development, University of California, Berkeley, this study explores two…

Strategies to minimize attrition in longitudinal studies.

1990

Tags: 1990, Backlog, Collins C, Given BA, Given CW, Journal Article, Keilman LJ, Longitudinal Studies, Nursing Research

Patient satisfaction and change in medical care provider: a longitudinal study

Longitudinal data from The Rand Corporation's Health Insurance Experiment were used to test the hypothesis that provider continuity can be modeled as one behavioral consequence of patient satisfaction. Bivariate and multivariate analyses (controlling…

Tags: 1983, Backlog, Consumer Satisfaction, Continuity Of Patient Care, Davies AR, Journal Article, Longitudinal Studies, Marquis MS, Medical Care, Ohio, Personal Health Services, Primary Health Care, Probability, Ware JE

Development of a brief coping checklist for use with pediatric populations.

1988

Tags: 1988, Adaptation, Adolescent, Backlog, Child, Chronic Disease/psychology, Humans, Journal Article, Journal of Pediatric Psychology, Longitudinal Studies, Psychological, Psychometrics, Reference Values, Spirito A, Stark LJ, Williams C

Content validity of a pediatric functional independence measure.

1990

Tags: 1990, Activities of Daily Living, Applied Nursing Research, Backlog, Child, Granger CV, Humans, Infant, Journal Article, Longitudinal Studies, McCabe MA, Nursing Assessment/standards, Preschool, Psychometrics, Reproducibility of Results, Self Care

Wilson's disease: a longitudinal study of psychiatric symptoms

One hundred and twenty-nine cases of Wilson's disease (WD) were assessed at index admission and two follow-ups (F1 and F2) on a range of clinical and biochemical variables. The commonest psychiatric symptoms throughout were incongruous behavior,…

Therapeutic modification of membrane lipid abnormalities in juvenile neuronal ceroid-lipofuscinosis (Batten disease).

Five patients with juvenile neuronal ceroid-lipofuscinosis, who were shown to have absent or reduced serum prebetalipoprotein and a deficiency of polyunsaturated fatty acids in erythrocyte membrane lipids, were treated for a period of one year with…

Follow-up on seven adult patients with mild Sanfilippo B-disease.

This report describes 7 patients, aged 30 to 43 years, suffering from a mild variant of Sanfilippo B-disease. Somatic findings in these patients are unremarkable. Dementia and behavioral disturbances occurred late in the course of the disease. All 7…

Tags: 1987, Adult, Age Factors, American Journal Of Medical Genetics, Backlog, Dementia/complications/genetics, Female, Follow-up Studies, Humans, Journal Article, Longitudinal Studies, Male, Mental Retardation/complications/genetics, Mucopolysaccharidoses/genetics, Mucopolysaccharidosis III/genetics, Pedigree, van de Kamp JJ, van Schrojenstein-de Valk HM

Not knowing-the problem of pain in children with severe neurological impairment.

This study uses a grounded theory approach to explore the diagnostic and clinical decision-making processes used by parents and healthcare professionals in relation to pain in children with severe to profound neurological impairment. Three forms of…

Tags: 2003, Backlog, Goldman A, Hunt A, International Journal Of Nursing Studies, Journal Article, Longitudinal Studies, Mastroyannopoulou K, Seers K

Mapping the journey of cancer patients through health care system. Part 1: developing the research question

This is the first in a series of articles relating results from research which constructed a complete history of interactions with the health care system from available data sources for all patients diagnosed in 1990 with primary breast, colorectal,…

Internet versus mailed questionnaires: A randomized comparison.

BACKGROUND: The use of Internet-based questionnaires for collection of data to evaluate patient education and other interventions has increased in recent years. Many self-report instruments have been validated using paper-and-pencil versions, but we…

The natural history of type B Niemann-Pick disease: Results from a 10-year longitudinal study.

OBJECTIVES: Type B Niemann-Pick disease (NPD-B) caused by acid sphingomyelinase deficiency is a rare, autosomal recessive, lysosomal storage disorder with a broad range of disease severity. The objectives of this study were to document the natural…

Hospital staff and family perspectives regarding quality of pediatric palliative care.

BACKGROUND: Development of a pediatric palliative care program was preceded by a needs assessment that included a staff survey and family interviews regarding improving pediatric palliative care. METHODS: Four hundred forty-six staff members and…

Circumstances surrounding the deaths of hospitalized children: opportunities for pediatric palliative care.

OBJECTIVES: Little is known regarding the assessment and treatment of symptoms during end-of-life (EOL) care for children. This study was conducted to describe the circumstances surrounding the deaths of hospitalized terminally ill children,…

Do Interventions Make a Difference to Bereaved Parents? A Systematic Review of Controlled Studies.

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…

Tags: 2002, Backlog, Bereavement, Female, Humans, International Journal of Palliative Nursing, Intervention, Intervention Studies, Interventions, Journal Article, Longitudinal Studies, Male, Parents/psychology, Rowa-Dewar N

Experiences of families in which a child has a prolonged terminal illness: modifying factors.

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…

Tags: 2002, Backlog, Child, Communication, Family, Female, Humans, International Journal of Palliative Nursing, Journal Article, Longitudinal Studies, Male, Neurodegenerative Diseases/nursing, Non-U.S. Gov't, Parents/psychology, Research Support, Steele R, Terminal Care/psychology

Mothers' perceptions of benefit following pediatric stem cell transplantation: a longitudinal investigation of the roles of optimism, medical risk, and sociodemographic resources

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.…

Caregiving process and caregiver burden: conceptual models to guide research and practice.

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…

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