Browse Items · Pediatric Palliative Care Library

The assessment of values in laryngeal cancer: reliability of measurement methods

Although quantitative estimates of patients' attitudes toward the relative importance of different aspects of health are of great potential usefulness in medical decision making, there is little information about the stability of such values over…

The art of healing and knowing in cancer and palliative care

This article examines the role of artwork in cancer and palliative care. The literature review focuses on both children and adults. One case scenario focuses on a child's reaction to his mother's illness showing his distress through painting. Artwork…

Terminal dehydration, a compassionate treatment

Symptoms suffered by life-limited children that cause anxiety to UK children's hospice staff

BACKGROUND: Very little is published about the symptom profile of children with life-limiting illnesses other than cancer. METHOD: A postal questionnaire was sent to children's hospice staff who were asked to identify symptoms experienced by…

Symptoms in the palliative phase of children with cancer

BACKGROUND: The aim of the study was to make a comprehensive inventory of the physical, psychological, and social symptoms of children with cancer and their parents during the palliative phase and the extent to which health professionals address…

Symptoms and Suffering at the End of Life in Children with Cancer

Cancer is the leading cause of nonaccidental death in childhood.1 There has, however, been little evaluation of the overall experience at the end of life of children who are dying of cancer or of their symptoms other than pain.2,3 A number of studies…

Tags: 2000, Anorexia/etiology/therapy, Backlog, Boston, Child, Children's Hospital (Boston), Clodronate, Constipation/etiology/therapy, Dana-Farber Cancer Institute (Boston), Death and Euthanasia, Diarrhea/etiology/therapy, Dyspnea/etiology/therapy, Ellenbogen JM, Emanuel EJ, Empirical Approach, Fatigue/etiology/therapy, Grier Holcombe E, Health Care Surveys, home care services, Humans, Journal Article, Klar Neil, Levin SB, Logistic Models, Longitudinal Studies, Neoplasms/complications/therapy, New England Journal Of Medicine, Non-U.S. Gov't, Oncology at EOL, P.H.S., Pain/etiology/therapy, Palliative Care/standards/statistics & Numerical Data, Parents, Physicians, Professional Patient Relationship, Psychological, Quality Of Health Care, Quality Of Life, Questionnaires, Research Support, Salem-Schatz S, Stress, Terminal Care, U.S. Gov't, Weeks Jane C, Withholding Treatment, Wolfe J

Supportive and palliative care of children with metabolic and neurological diseases

PURPOSE OF REVIEW: To review the role of pediatric palliative care (PPC) for children with metabolic and neurological diseases. RECENT FINDINGS: There is a growing body of literature in PPC, though it remains limited for children with metabolic and…

Suicide ideation among parents bereaved by the violent deaths of their children.

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:…

Suffering indicators in terminally ill children from the parental perspective

PURPOSE: Suffering is a complex multifaceted phenomenon, which has received limited attention in relation to children with terminal illness. As part of a wider study we interviewed parents of children with terminal illness to elicit their…

Structural equation and log-linear modeling: a comparison of methods in the analysis of a study on caregivers' health

BACKGROUND: In this paper we compare the results in an analysis of determinants of caregivers' health derived from two approaches, a structural equation model and a log-linear model, using the same data set. METHODS: The data were collected from a…

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…

Stress, coping, and hope

Hope is discussed in many literatures and from many perspectives. In this essay hope is discussed from the vantage of psychology and stress and coping theory. Hope and psychological stress share a number of formal properties: both are contextual,…

Tags: 2010, Adaptation, Attitude To Health, Backlog, Folkman S, Humans, Journal Article, Neoplasms/psychology, Psycho-Oncology, Psychological, Psychological/psychology, Stress, Uncertainty

Stress, appraisal, and coping

Tags: 1984, Adaptation, Book/Book Section, Folkman S, Lazarus RS, Psychological, Stress

Staff experiences with end-of-life care in the pediatric intensive care unit

The purposes of this study were to describe the experiences of pediatric intensive care unit (PICU) staff caring for a child who dies, and to determine whether responses included unprompted indications of moral distress as described in the…

Tags: 2008, Backlog, Dupree CY, Grief, Hospital/psychology, Humans, Intensive Care Units, Interviews as Topic/methods, Journal Article, Journal of Palliative Medicine, Lee KJ, Medical, Medical Staff, Pediatric, Professional-patient Relations, Psychological, Stress, Technology, Terminal Care/ethics/methods

Spirituality among parents of children with cancer in a Middle Eastern country

PURPOSE: Family caregivers of children with cancer face emotional, psychological, and spiritual challenges coping with their child's illness. For ensuring comprehensive multidisciplinary pediatric care, there is a need to understand and define what…

Tags: 2019, Adaptation, Cancer, Caregivers, Children, Developing World 2019 List, Doumit M A A, European Journal Of Oncology Nursing, Hermeneutics, Lebanon, Majdalani M, Palliative Care, Psychological, Qualitative Study, Rahi A C, Saab R, Spirituality

Spiritual aspects of loss among partners of men with AIDS: postbereavement follow-up

This article is a follow-up study of bereaved caregiving male partners of men with AIDS (T.A. Richards & S. Folkman, 1997). The earlier study examined spiritual beliefs, experiences, and practices reported in interviews with 125 caregivers conducted…

Siblings of pediatric cancer patients: the quantitative and qualitative nature of quality of life

This study used both quantitative and qualitative methodologies to assess the pediatric health-related quality of life (HRQOL) in siblings (n = 77) of cancer patients attending summer camp. On quantitative measures (Pediatric Quality of Life…

Siblings of a child with cancer

A total of 21 healthy siblings were interviewed about their experiences when a brother or sister is diagnosed with cancer. Information about the illness, opinions about who should inform siblings, social support, specific worries and worst memories…

Siblings Caring for and about Pediatric Palliative Care Patients

Abstract Background: The experiences of young people who have siblings with life-limiting illnesses are not well understood. Aim: The study proposed to identify the concerns of siblings of pediatric palliative care (PPC) patients. Design and…

Sibling grief: a case report

The intensity of sibling grief and the significance of sibling mourning are described in research studies. Yet, nurses caring for dying children may be unaware of these findings and may not offer adequate support to assist siblings in working through…

Tags: 1991, Adaptation, Archives Of Psychiatric Nursing, Art, Attitude To Death, Backlog, Bereavement, Child, Family Therapy, Grief, Heiney SP, Humans, Journal Article, Male, Psychological, sibling bereavement, Sibling Relations

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…

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

Sibling bereavement and continuing bonds.

Historically, from a Freudian and medical model perspective, emotional disengagement from the deceased was seen as essential to the successful adaptation of bereavement. A major shift in the bereavement literature has occurred and it is now generally…

Sharing the care: the key-working experiences of professionals and the parents of life-limited children

AIMS: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). METHOD: Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric…

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

Sense of coherence, life stress, and psychological distress: a prospective methodological inquiry

Antonovsky (1987) has proposed the Sense of Coherence (SOC) as a global perceptual predisposition in responding to life stress. Composed of comprehensibility, manageability, and meaningfulness, this construct has been associated with more adaptive…

Risk factors in the adjustment of siblings of children with cancer

The study investigated the psychological adjustment of 99 siblings of children with cancer. At 6 months post-diagnosis, 24 siblings had scores in the borderline or clinical range on parent- and teacher-completed measures of behavioural adjustment and…

Rethinking the role of tube feeding in patients with advanced dementia

Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids.

When provided by a skilled, multidisciplinary team, palliative care is highly effective at addressing the physical, psychological, social, and spiritual needs of dying patients and their families. However, some patients who have witnessed harsh death…

Resilience to loss in bereaved spouses, bereaved parents, and bereaved gay men

Recent research has indicated that many people faced with highly aversive events suffer only minor, transient disruptions in functioning and retain a capacity for positive affect and experiences. This article reports 2 studies that replicate and…

Research with bereaved parents: A question of how not why.

BACKGROUND: There is tension around the notion of research with bereaved parents. While it is recognised that the care of children with palliative care needs will only improve with better understanding of parent perspectives, the vulnerability of…

Relationship between three palliative care outcome scales

BACKGROUND: Various scales have been used to assess palliative outcomes. But measurement can still be problematic and core components of measures have not been identified. This study aimed to determine the relationships between, and factorial…

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…

Reconceptualization of the uncertainty in illness theory

The theory of uncertainty in illness has its strongest support among subjects who are experiencing the acute phase of illness or are in a downward illness trajectory (mishel, 1988a). The theory has not addressed the experience of living with…

Tags: 1990, Adaptation, Anomie, Backlog, Concept Formation, Cues, Disease/psychology, Humans, Image--the Journal Of Nursing Scholarship, Journal Article, Mishel MH, Models, Psychological, Psychological Theory, Social Values

Recognizing suffering

Implies that the profession of medicine must pursue the relief of suffering. Definition of suffering; Wholeness, person, and self-identity; Purpose; Knowing the suffering of others; Knowledge of others as individuals; Aesthetics.

Tags: 1991, Backlog, Cassell EJ, Disease/psychology, Esthetics, Humans, Journal Article, Patients/psychology, Personhood, Professional Patient Relationship, Psychological, Social Values, Stress, The Hastings Center Report, Virtues

Quality of life and psychological adaptation in siblings of paediatric cancer patients, 2 years after diagnosis

Several studies have been conducted on sibling psychosocial adaptation to cancer in a brother or sister, but little is known on how the long-term adaptation of siblings to the illness develops. The concept quality of life has primarily been applied…

Psychosocial functioning in youth with glycogen storage disease type I

OBJECTIVE: To assess the quality of life and psychosocial functioning among pediatric patients with Glycogen Storage Disease (GSD) types Ia and Ib. METHODS: Thirty-one youth with GSD types Ia and Ib and 42 healthy controls participated. Quality of…

Psychosexual development in adolescents with chronic medical illnesses

The author provides a literature review and developmental formulation, with the goal to assist clinicians working with medically ill adolescents with psychosexual issues. MEDLINE and PsychINFO database searches of English-language medical journal…

Tags: 1998, Adaptation, Adolescent, Adolescent Transitions, Backlog, Child, Chronic Disease/psychology, Female, Humans, Journal Article, Lock J, Male, Psychological, Psychosexual Development, Psychosomatics, Sick Role

Psychometric properties of the Dutch version of the posttraumatic growth inventory among cancer patients

In the current study, we investigated the psychometric properties of a Dutch translation of the posttraumatic growth inventory in a heterogeneous group of cancer patients. Its original five-factor structure was maintained. The internal consistency of…

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

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