Browse Items · Pediatric Palliative Care Library

AIDS palliative care demands a new model

1992

Tags: 1992, Acquired Immunodeficiency Syndrome/therapy, Backlog, Human, Journal Article, Malcolm JA, Medical Journal Of Australia, Models, Palliative Care, Sutherland DC, Terminal Care, Theoretical

A model for transition from pediatric to adult care in cystic fibrosis

With improved medical technology, many chronic medical conditions of childhood are now recognized as conditions of childhood onset. Appropriate treatment of these conditions in the adult patient is required. The pediatric setting is not appropriate…

Transition from pediatric to adult services: are we getting it right?

PURPOSE OF REVIEW: The transition of healthcare from pediatric to adult settings has become more significant over the past 20 years as the survival of young people with chronic illness and disability has increased and healthcare delivery has become…

Tags: 2008, Adolescent, Adolescent Medicine/organization & administration, Adolescent Transitions, Age Factors, Australia, Backlog, Chronic Disease, Continuity Of Patient Care/organization & Administration, Current Opinion In Pediatrics, Delivery of Health Care/organization & administration, Humans, Journal Article, Kennedy A, Models, Organizational, Patient Care Planning/organization & administration, Pediatrics, Sawyer S

Understanding sleep-wake behavior and sleep disorders in children: the value of a model

PURPOSE OF REVIEW: Sleep-wake problems such as night wakings, excessive crying, or difficulties in falling asleep are frequent behavioral issues during childhood. Maturational changes in sleep and circadian regulation likely contribute to the…

The natural history of Niemann-Pick disease type C in the UK

Niemann-Pick disease type C (NPC) is an autosomal recessive, neurovisceral lipid storage disorder. Mutations in two genes (NPC1 and NPC2) produce indistinguishable clinical phenotypes by biochemical mechanisms that have not yet been entirely…

Testing the grief to personal growth model using structural equation modeling.

The belief that loss can result in growth has been hypothesized for centuries.Yet, traditional grief theories have viewed grief work as a process of resolving grief and returning to normal. Formal conceptualizations of grief to growth models have…

Tags: 2002, Adult, Backlog, Death studies, Grief, Hogan NS, Humans, Journal Article, Models, Parents/psychology, Personality Development, Schmidt LA, Social Support, Theoretical

Sense of coherence: a relevant resource in the coping process of mothers of deaf and hard-of-hearing children?

This study examined the importance of reported sense of coherence (Antonovsky, 1987) in mothers of children with hearing impairment. Sense of coherence was explored as a factor in relation to the experience of stress and subjective life satisfaction…

Tags: 2004, Adaptation, Analysis of Variance, Backlog, Deafness/psychology, Female, Hintermair M, Humans, Journal Article, Journal Of Deaf Studies And Deaf Education, Models, Mothers/psychology, Psychological, Psychological/psychology, Questionnaires, Stress, Theoretical

Variations in adult congenital heart disease training in adult and pediatric cardiology fellowship programs

OBJECTIVES: The purpose of this study was to evaluate adult congenital heart disease (CHD) training among U.S. cardiology fellowship programs. BACKGROUND: Although training recommendations for caring for adults with CHD exist, the educational…

Posttraumatic growth in treatment-seeking female assault victims

The importance of measuring growth outcomes following a traumatic event has been highlighted in recent literature (e.g., Linley, Joseph: Journal of Traumatic Stress 17:11-21, 2004). Although reports of growth are abundant, the relationship between…

Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders

Approaches to providing comprehensive coordinated care for individuals with complex diseases include the medical home approach, the chronic care model in primary care, and disease-specific, multidisciplinary specialty clinics. There is uneven…

Tags: 2009, Adolescent Transitions, Backlog, Comprehensive Health Care/methods, Genetic, Genetic Diseases, Grosse SD, Humans, Inborn/diagnosis/epidemiology/therapy, Interdisciplinary Communication, Journal Article, Kulkarni R, Lloyd-Puryear MA, Models, Pediatrics, Schechter MS, Strickland B, Trevathan E, United States/epidemiology

National hospice study analysis plan

Since the founding of the first hospice in the United States in 1974, the number of health care organizations providing hospice services has grown rapidly. In 1978, the U.S. General Accounting Office identified 59 operational hospices [1]. A survey…

An alternative in terminal care: results of the National Hospice Study

Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional…

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…

Developing a process to support perinatal nurses after a critical event

The work of perinatal nurses sometimes includes emergencies involving death, or near death, which can leave health care providers with feelings of stress and grief. After experiencing a particularly stressful period, nurses at our organization…

Positive psychological states and coping with severe stress

Providing care to a spouse or partner who is dying and then losing that person are among the most stressful of human experiences. A longitudinal study of the caregiving partners of men with AIDS showed that in addition to intense negative…

Tags: 1997, Acquired Immunodeficiency Syndrome/psychology/therapy, Adaptation, Backlog, Bereavement, Caregivers/psychology, Death, Folkman S, Humans, Journal Article, Male, Models, P.H.S., Psychological, Research Support, Social science & medicine, Stress, U.S. Gov't

Prediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study

BACKGROUND: The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children. OBJECTIVE: To…

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…

Adjustment to chronic pain: the role of pain acceptance, coping strategies, and pain-related cognitions

BACKGROUND: Previous research has found that acceptance of pain is more successful than coping variables in predicting adjustment to pain. PURPOSE: To compare the influence of acceptance, pain-related cognitions and coping in adjustment to chronic…

The consultant and the patient-physician relationship. A trilateral deliberative model

Coping with chronic pain

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…

Mutations in capillary morphogenesis gene-2 result in the allelic disorders juvenile hyaline fibromatosis and infantile systemic hyalinosis

Juvenile hyaline fibromatosis (JHF) and infantile systemic hyalinosis (ISH) are autosomal recessive syndromes of unknown etiology characterized by multiple, recurring subcutaneous tumors, gingival hypertrophy, joint contractures, osteolysis, and…

Transition to adult services for children and young people with palliative care needs: a systematic review

OBJECTIVE: To evaluate the evidence on the transition process from child to adult services for young people with palliative care needs. DESIGN: Systematic review. SETTING: Child and adult services and interface between healthcare providers. PATIENTS:…

The final step in programmed cell death: phagocytes carry apoptotic cells to the grave.

As cells undergo apoptosis, they are recognized and removed from the body by phagocytes. This oft-overlooked yet critical final step in the cell-death programme protects tissues from exposure to the toxic contents of dying cells and also serves to…

Weaving for the future: using rulers and roses

2001

Tags: 2001, Administration, Backlog, Biomedical, Canadian Oncology Nursing Journal, Davies B, Evidence-based Medicine, Forecasting, Humans, Journal Article, Leadership, Models, Nurse's Role, Nursing, Nursing Process, Nursing Research/organization &, Oncologic Nursing/education/organization &, Organizational Objectives, Technology Assessment

Designing a mixed methods study in primary care

BACKGROUND: Mixed methods or multimethod research holds potential for rigorous, methodologically sound investigations in primary care. The objective of this study was to use criteria from the literature to evaluate 5 mixed methods studies in primary…

Tags: 2004, Annals Of Family Medicine, Backlog, Creswell JW, Fetters MD, Health Services Research/methods, Humans, Ivankova NV, Journal Article, Models, Multi-site Ethics, Primary Health Care, Qualitative Research, Research Design, Theoretical

A home for medically complex children: the role of hospital programs

The medical home is a conceptual model of continuous and comprehensive care provision that is associated with improved outcomes for children with special healthcare needs. Most applications of the medical home have focused on improving primary care…

Tags: 2008, Adams S, Backlog, Child, Cohen E, Continuity Of Patient Care, Disease Management, Friedman J, Health Services Needs And Demand, home care services, Hospital-Based, Hospitalized, Humans, Journal Article, Journal For Healthcare Quality, Models, Nicholas DB, Organizational, Rosenbaum P

Constructing a prospective model of psychosocial adaptation in young adolescents with spina bifida: an application of optimal data analysis

OBJECTIVE: To examine how individual- and family-level predictors in late childhood and preadolescence relate to psychosocial adaptation (i.e., scholastic success, social acceptance, and positive self-worth) in early adolescence. METHOD: This…

Sibling death and death fear in relation to depressive symptomatology in older adults

Previously overlooked factors in elders' depressive symptomatology were examined, including death fear, sibling death, and sibling closeness. Participants were 150 elders (61 men, 89 women) aged 65-97 years with at least one sibling. Measures were…

Grief and coping of parents whose child has a constant life-threatening disability, hypoplastic left heart syndrome with reference to the Dual-Process Model

This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and…

Tags: 2018, Cantwell-Bartl A, Child, Coping, Death studies, Grief, Human, Hypoplastic Left Heart Syndrome -- Diagnosis, Hypoplastic Left Heart Syndrome -- Psychosocial Factors, Hypoplastic Left Heart Syndrome -- Therapy, Interviews, July 2018 List, Models, Parent-child Relations, Parental Attitudes, Psychological, Recovery, Secondary Analysis, Thematic Analysis

Transition from pediatric to adult-oriented health care: a challenge for patients with chronic disease

Pediatric providers can expect that 1 of every 10 patients they see will have a chronic, activity-limiting health condition. Thanks to earlier diagnosis and improved therapies, most of these children will live well into adulthood. This means that…

Gender differences in parenting a child with cancer

This study of 124 parents of children diagnosed with cancer investigates parents' perceptions of their role in the illness situation. The study found that mothers and fathers differ in their experience of and response to parenting a child with…

Advanced illness index: Predictive modeling to stratify elders using self-report data

OBJECTIVES: Develop a prediction model to identify persons who have an increased risk of dying within the next 36 months, in order to focus additional resources and assessment in areas related to advanced care planning. DESIGN: Retrospective study…

Models of Pediatric Palliative Oncology Outpatient Care-Benefits, Challenges, and Opportunities

PURPOSE: Although the bulk of current pediatric palliative care (PPC) services are concentrated in inpatient settings, the vast majority of clinical care, symptom assessment and management, decision-making, and advance care planning occurs in the…

Tags: 2019, Baker J N, Bower K A, Brock K E, Journal of Oncology Practice, Kaye E C, Models, Oncology, Oncology 2019 List, outpatient care, Pediatric Palliative Care, Snaman J M, Ullrich C, Weaver M S, Wolfe J

On the mathematical modelling of pain

In this review a case is presented for the use of mathematical modelling in the study of pain. The philosophy of mathematical modelling is outlined and a recommendation is made for the use of modern nonlinear techniques and computational neuroscience…

Tags: 1996, Analgesia, Animals, Axons/physiology, Backlog, Britton NF, Humans, Journal Article, Models, Nerve Net/physiology, Neurochemical Research, Neurological, Neuronal Plasticity, Neurons/physiology, Pain/physiopathology, Reproducibility of Results, Skevington SM, Theoretical

On the robustness of LISREL (maximum likelihood estimation) against small sample size and non-normality

Tags: 1983, Book/Book Section, Boomsma A, Models, statistical

Loss, trauma, and human resilience: have we underestimated the human capacity to thrive after extremely aversive events?

Many people are exposed to loss or potentially traumatic events at some point in their lives, and yet they continue to have positive emotional experiences and show only minor and transient disruptions in their ability to function. Unfortunately,…

Tags: 2004, Adaptation, Adult, Backlog, Bonanno GA, Emotions, Grief, Humans, Journal Article, Laughter, Models, Psychological, Repression, The American Psychologist, Wounds and Injuries/psychology

Enabling the transition to hospice through effective palliative care

The end of life has changed dramatically in recent years as life expectancies have increased, chronic disease rates have risen, and families, health care systems, and society have changed. As technology has advanced, death too often has become viewed…

Is an advance care planning model feasible in community palliative care? A multi-site action research approach.

AIM: This article reports a study to determine the feasibility of an advance care planning model developed with Australian community palliative care services., BACKGROUND: An effective advance care planning programme involves an organizational wide…

Tracking the route to sustainability: a service evaluation tool for an advance care planning model developed for community palliative care services.

AIMS AND OBJECTIVES: The study aim was to develop a service evaluation tool for an advance care planning model implemented in community palliative care., BACKGROUND: Internationally, advance care planning programmes usually measure success by…

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