Browse Items · Pediatric Palliative Care Library

Combining single patient (N-of-1) trials to estimate population treatment effects and to evaluate individual patient responses to treatment

When treating individual patients, physicians may face difficulties using the evidence from center-based randomized control trials (RCTs) due to limitations in these studies generalizability. Therefore, they often perform their own "informal" tests…

Factors important to patients' quality of life at the end of life

BACKGROUND: When curative treatments are no longer options for patients dying of cancer, the focus of care often turns from prolonging life to promoting quality of life (QOL). Few data exist on what predicts better QOL at the end of life (EOL) for…

Neuronal plasticity: increasing the gain in pain

We describe those sensations that are unpleasant, intense, or distressing as painful. Pain is not homogeneous, however, and comprises three categories: physiological, inflammatory, and neuropathic pain. Multiple mechanisms contribute, each of which…

Stress, social support, and sense of coherence

In the Salutogenic Model, Aaron Antonovsky suggested that a sense of coherence (SOC) is the key determinant in the maintenance of health. He theorized that individuals with a strong SOC have the ability to (a) define life events as less stressful…

Transition: a conceptual analysis in the context of siblings of children with cancer

Transition has been described by many disciplines. However, the concept of transition has yet to be applied to the sibling experience of childhood cancer. Understanding the transitions that siblings encounter is important because it will offer nurses…

Good practices that address continuity during transition from child to adult care: synthesis of the evidence

BACKGROUND: Effective transition to adult services is required by an increasing number of children with ongoing needs. AIM: To identify practices that promote continuity at transition between child and adult services. METHODS: Systematic examination…

CAMHS liaison: supporting care in general paediatric settings

Increasing numbers of children and young people with mental health problems are being cared for in general paediatric settings, presenting a challenge to nurses who do not have mental health nursing qualification and experience. A survey of nurses in…

Exploring multi-agency working in services to disabled children with complex healthcare needs and their families

Children with complex healthcare needs typically require technical and/or medical equipment in the home. This growing group of children and families need support that crosses agency and professional boundaries, necessitating effective multi-agency…

Relational autonomy: moving beyond the limits of isolated individualism

Although clinicians may value respecting a patient's or surrogate's autonomy in decision-making, it is not always clear how to proceed in clinical practice. The confusion results, in part, from which conception of autonomy is used to guide ethical…

Coordinating the norms and values of medical research, medical practice and patient worlds-the ethics of evidence based medicine in orphaned fields of medicine

Evidence based medicine is rightly at the core of current medicine. If patients and society put trust in medical professional competency, and on the basis of that competency delegate all kinds of responsibilities to the medical profession, medical…

Place and provision of palliative care for children with progressive cancer: a study by the Paediatric Oncology Nurses' Forum/United Kingdom Children's Cancer Study Group Palliative Care Working Group

PURPOSE: The purpose of this study was to describe and show effectiveness of the outreach team model of palliative care (PC) in allowing home death for children with incurable cancer. PATIENTS AND METHODS: Over 7 months, 185 children from 22 United…

Quantitative estimation of rare adverse events which follow a biological progression: a new model applied to chronic NSAID use

Randomised controlled trials (RCTs) alone are unlikely to provide reliable estimates of the incidence of rare events because of their limited size. Cohort, case control, and other observational studies have large numbers but are vulnerable to various…

Improving estimates of caregiver time cost and family impact associated with birth defects

BACKGROUND: Birth defects impose substantial costs on both families and society because of medical, developmental, and special education needs. Caring for children with birth defects also may influence caregiver time and impact the family. However,…

Tags: 2001, Abnormalities/epidemiology/psychology, Backlog, Caregivers/psychology, Cost Of Illness, Family Health, Hobbs CA, Humans, ICU Decision Making, Journal Article, Models, Parents, Quality-Adjusted Life Years, Robbins JM, Social Support, statistical, Teratology, Tilford JM, Time Factors

Towards clarification of convergent concepts: sense of coherence, will to meaning, locus of control, learned helplessness and hardiness

The multidisciplinary field of stress and stress-related health outcomes has generated theoretical and practical knowledge which is of interest to nurses. Theoretical developments which have assumed a prominent role in the study of stress, health and…

Tags: 1993, Attitude, Backlog, Freedom, Health, Helplessness, Humans, Internal-External Control, Journal Article, Journal Of Advanced Nursing, Learned, Models, Nursing, Philosophy, Psychological, Psychological/psychology, Self Concept, Stress, Sullivan GC

Psychological resilience, pain catastrophizing, and positive emotions: perspectives on comprehensive modeling of individual pain adaptation

Pain is a complex construct that contributes to profound physical and psychological dysfunction, particularly in individuals coping with chronic pain. The current paper builds upon previous research, describes a balanced conceptual model that…

Tags: 2013, Adaptation, Backlog, Catastrophization, Cognition, Current Pain and Headache Reports, Emotions, Female, Humans, Journal Article, Male, Models, Motivation, Pain, Pain Measurement, Psychological, Resilience, Sturgeon JA, Zautra AJ

Learning that leads to action: impact and characteristics of a professional education approach to improve the care of critically ill children and their families

OBJECTIVE: To determine the impact of an innovative professional educational approach on clinicians' confidence and ability to make institutional improvements in pediatric palliative care. DESIGN: Evaluation to assess impact of educational…

Contrasting emotional approach coping with passive coping for chronic myofascial pain

Passive or emotion-focused coping strategies are typically related to worse pain and adjustment among chronic pain patients. Emotional approach coping (EAC), however, is a type of emotion-focused coping that appears to be adaptive in some nonpain…

The family, crisis and chronic illness: an evolutionary model

While chronic illness has a profound impact upon the individual, an immense burden is imposed upon the family. When the competing demands of an illness and the family escalate exponentially, there may be a crisis. Traditionally, crisis theory has…

Tags: 1992, Adolescent, Attitude To Health, Backlog, Chronic Disease/nursing/psychology, Crisis Intervention, Emergencies/nursing/psychology, Family/psychology, Female, Halliday PH, Humans, Journal Article, Journal Of Advanced Nursing, Models, Nursing, Parent caregivers, Role, Shaw MC, Systems Theory

Family bereavement and cultural diversity: a social developmental perspective

This article offers an integrative, interdisciplinary model of bereavement as a family developmental process that unfolds in cultural context. A critique of cultural assumptions highlights the culture-bound nature of prevailing North American…

Tags: 1996, Acculturation, Adaptation, Attitude To Death/ethnology, Backlog, Bereavement, Cultural Diversity, Family Process, Family Therapy, Family/ethnology/psychology, Humans, Journal Article, Models, North America, Psychological, Shapiro ER, SSHRC CURA

Re-examining perceived ease of use and usefulness: a confirmatory factor analysis

Adams et al. (1992) presented the results of 2 studies designed to replicate previous work by Davis (1989) regarding perceived usefulness, ease of use, and their influence on the usage of information technology. To measure the influence of usefulness…

Tags: 1993, Backlog, Evaluation Studies, Grover V, Journal Article, Management Information Systems Quarterly, Models, Segars A, Statistics, Theoretical

Social network analysis as an analytic tool for interaction patterns in primary care practices

PURPOSE: Social network analysis (SNA) provides a way of quantitatively analyzing relationships among people or other information-processing agents. Using 2 practices as illustrations, we describe how SNA can be used to characterize and compare…

Objective assessment of changing mortality risks in pediatric intensive care unit patients.

OBJECTIVE: To develop and validate a mortality risk predictor based on physiologic data that estimates daily the probability of a patient dying within the next 24 hrs as that probability changes with disease and recovery. SETTING: Nine pediatric ICUs…

A framework for integrated pediatric palliative care: being with dying

Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges…

Clinical and genetic spectrum of Sanfilippo type C (MPS IIIC) disease in The Netherlands

Mucopolysaccharidosis IIIC (MPS IIIC, Sanfilippo C syndrome) is a lysosomal storage disorder caused by deficiency of the lysosomal enzyme acetyl-CoA:alpha-glucosaminide N-acetyltransferase (HGSNAT). We performed a clinical study on 29 Dutch MPS IIIC…

Sibling bereavement: a concept analysis.

Investigators of sibling bereavement contend that the death of a sibling represents a unique and intense loss experience. The empirical literature, however, lacks conceptual clarity about the characteristics of sibling bereavement. Metaphors of…

Tags: 1997, Adult, Backlog, Bereavement, Concept Formation, Death, Death studies, Humans, Journal Article, Mahon MM, Models, Psychological, Research Design, Robinson L, Self Concept, sibling bereavement, Sibling Relations, T, United States

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…

The health and well-being of caregivers of children with cerebral palsy.

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…

The nature of opioid responsiveness and its implications for neuropathic pain: new hypotheses derived from studies of opioid infusions

In recent years, the observation that the response of patients to opioid drugs may be influenced by properties inherent in the pain or pain syndrome, such as its pathophysiology, has evolved into the belief that certain types of pain, e.g.,…

The Effects of Chronic Disease on Ambulatory Care–Sensitive Hospitalizations for Children or Youth

Considerable research has focused on hospitalizations for ambulatory care–sensitive conditions (ACSHs), but little of that research has focused on the role played by chronic disease in ACSHs involving children or youth (C/Y). This research…

The ON TRAC model for transitional care of adolescents

This article describes the framework and clinical pathway for ON TRAC (Taking Responsibility for Adolescent/Adult Care), a model of transition care for adolescents with chronic health conditions, as applied to pediatric transplant transition. This…

Tags: 2006, Adolescent, Adolescent Health Services/organization & administration, Adolescent Transitions, Backlog, Child, Continuity Of Patient Care/organization & Administration, Critical Pathways, Humans, Journal Article, Models, Organ Transplantation/psychology, Organizational, Paone MC, Patient Care Planning/organization & administration, Progress In Transplantation (aliso Viejo, Calif.), Saewyc E, Wigle M

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

The development of an interdisciplinary outpatient clinic in specialist palliative care

The interdisciplinary team approach is essential in the assessment and management of the palliative care of patients and their families. An innovative approach has been developed to allow the interdisciplinary team to see patients and their families…

Models for structuring a clinical initiative to enhance palliative care in the intensive care unit: a report from the IPAL-ICU Project (Improving Palliative Care in the ICU)

OBJECTIVE: To describe models used in successful clinical initiatives to improve the quality of palliative care in critical care settings. DATA SOURCES: We searched the MEDLINE database from inception to April 2010 for all English language articles…

Neurodegenerative disease: the neuronal ceroid lipofuscinoses (Batten disease)

In the past decade there have been significant advances in our understanding of the molecular genetic basis of the neuronal ceroid lipofuscinoses, a clinically and genetically heterogeneous group of childhood neurodegenerative storage disorders.…

Tags: 2001, Animal, Backlog, Child, Chromosome Mapping, Current Opinion in Neurology, Genetic, Genotype, Human, Infant, Journal Article, Membrane Proteins/genetics, Mitchison HM, Models, Mole SE, Neuronal Ceroid-Lipofuscinosis/diagnosis/genetics/therapy, Phenotype, Phosphoprotein Phosphatase/genetics, Proteins/genetics

Uncertainty in illness

1988

Tags: 1988, Adaptation, Backlog, Cognition, Disease/psychology, Educational Status, Humans, Image--the Journal Of Nursing Scholarship, Journal Article, Mental Processes, Mishel MH, Models, Professional-patient Relations, Psychological, Sick Role, Social Support

Tags: 2005, Adolescent, Adolescent Health Services/organization & administration, Adolescent Transitions, Adult, Backlog, Communication, Continuity Of Patient Care/organization & Administration, Counseling, Humans, Journal Article, McDonagh JE, Models, Organ Transplantation, Organizational, Parenting, Pediatric Transplantation

Browse Items (86 total)