Browse Items · Pediatric Palliative Care Library

Rethinking the role of tube feeding in patients with advanced dementia

2000

Tags: 'Physical', 2000, Alzheimer Disease/therapy, Aspiration/prevention & control, Backlog, Death and Euthanasia, Decision Making, Dementia/therapy, Empirical Research, Enteral Nutrition/adverse effects/standards, Euthanasia, Gillick MR, Humans, Journal Article, Legislation, Medical, Medical Futility, Mental Health Therapies, Passive, Pneumonia, Professional Patient Relationship, Psychological, Religion and Medicine, Restraint, Risk Assessment, Stress, The New England Journal Of Medicine, United States, Withholding Treatment

"you Don't Know Until You Get There": The Positive And Negative "lived" Experience Of Parenting An Adult Child With 22q11.2 Deletion Syndrome.

OBJECTIVES:
22q11.2 deletion syndrome (22q11DS), a complex genetic syndrome associated with more than 180 features, presents complex challenges for parents including gaining a diagnosis. This phenomenological study sought the "lived" interpretations…

Conceptual and measurement issues in the study of coping with chronic stress

Tags: 1997, Adaption, Book/Book Section, Caregivers, Coping With Chronic Stress, Gottlieb BH, Psychological, Psychology, Social Adjustment, Stress

An overview of National Hospice Study findings

beta-Endorphin and adrenocorticotropin are selected concomitantly by the pituitary gland

The opiate-like peptide beta-endorphin and adrenocorticotropin are concomitantly secreted in increased amounts by the adenohypophysis in response to acute stress or long-term adrenalectomy as well as in vitro in response to purified corticotropin…

Cytokine and hormone profiles in mice subjected to handling combined with rectal temperature measurement stress and handling only stress

Stress is known to either up or down regulate immunity. In this study, mice were subjected to handling combined with rectal temperature measurement (RTM) stress or handling only stress. We investigated whether there were any significant differences…

Perceived stress in HIV-infected individuals: Physiological and psychological correlates.

The purpose of this study was to determine the correlation of perceived stress with selected physiological and psychological factors in an HIV-infected, predominantly African American population and to assess the multivariable effects on perceived…

Palliative care in children with cancer: which child and when?

At a time of increasing interest in palliative care in pediatrics, pediatric oncology programs may be failing to deliver adequate palliation to children with cancer. In a recent study, parents of children who died on a pediatric oncology service…

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…

Parental stress and burden following traumatic brain injury amongst children and adolescents.

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…

Consensus guidelines on analgesia and sedation in dying intensive care unit patients

BACKGROUND: Intensivists must provide enough analgesia and sedation to ensure dying patients receive good palliative care. However, if it is perceived that too much is given, they risk prosecution for committing euthanasia. The goal of this study is…

Psychological distress in cancer patients assessed with an expert rating scale

The purpose of this study was to investigate psychosocial stress in a large sample of cancer patients using an expert rating scale. Specific aims were to analyse the relevance of setting variables (type of clinic, contact initiative, therapy) and…

Key factors affecting dying children and their families

The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships,…

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

A community survey of children with severe intellectual disability and their families: psychological adjustment, carer distress and the effect of respite care

The present paper describes a cross-sectional study of the psychosocial adjustment of 143 children with severe disability and their families identified from a regional case register for children with special needs. Thirty-eight per cent of the…

Mental and physical health of spouse caregivers: the role of personality

Although personal resources of caregivers, such as coping skills and social support, have been shown to be important in understanding caregiver stress and health outcomes, personality traits have not previously been considered. The purpose of this…

Paradigm shift: why a focus on health is important

Traditionally, medicine and the social and behavioral sciences have studied health by focusing on pathology. The purpose of this issue of the Journal is to go beyond such a vulnerability model and focus on thriving. We suggest that thriving…

Tags: 1998, Backlog, Ickovics JR, Journal Article, Journal Of Social Issues, Park CL, Psychological, Recovery of Function, Stress

Whom are we comforting? An analysis of comfort medications delivered to dying neonates

Bereavement support used by mothers in Ireland following the death of their child from a life-limiting condition

BACKGROUND: Children's palliative care is a rapidly developing specialism internationally. Bereavement support is an integral component of children's palliative care but to date little research has investigated the bereavement support that mothers in…

Human suffering: the need for relationship-based research in pediatric end-of-life care

Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must…

Human suffering: the need for relationship-based research in pediatric end-of-life care

Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must…

Maternal and paternal stress in families with school-aged children with disabilities

This study examined stress factors in families with a school-aged child with a disability. Path analyses revealed that children's demandingness and neediness for care was related more to maternal stress and that child's acceptability was related more…

Tags: 2004, Backlog, Child, Disabled Children, Family/psychology, Female, Honig AS, Humans, Journal Article, Keller D, Male, Mothers/psychology, Parent caregivers, Psychological/diagnosis/epidemiology/psychology, Social Support, Stress, The American Journal Of Orthopsychiatry

Perceptions on good death among parents of pediatric patients with hematology-oncology disease in advance

Background: It is difficult to perceive the preparation of a good death for children because of its social and cultural issues. Among the children with serious diseases, they can be alienated and the whole processes are done by the decision of the…

Family focused grief therapy: a randomized, controlled trial in palliative care and bereavement

OBJECTIVE: The aim of family focused grief therapy is to reduce the morbid effects of grief among families at risk of poor psychosocial outcome. It commences during palliative care of terminally ill patients and continues into bereavement. The…

Pediatric palliative care.

Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. In addition, for even the…

Anxiety and depression in parents 4-9 years after the loss of a child owing to a malignancy: a population-based follow-up.

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…

Caregiving stress, immune function, and health: implications for research with parents of medically fragile children

Caregiving stress has been associated with considerable demands imposed on parents responsible for the physical and emotional care of medically fragile children. With health care advances in medicine and technology, there are a growing number of…

Tags: 2004, Backlog, Caregivers/psychology, Child, Chronic Disease, Health Status, Humans, Immunity, Issues In Comprehensive Pediatric Nursing, Journal Article, Kuster PA, Merkle CJ, New telomeres, Parents/psychology, Psychological/immunology, Stress

Evolution of parental stress and coping processes: a framework for critical care practice

Crisis theory, stress and coping theory, and research on parental stress and coping during pediatric critical care experiences are integrated into a conceptual framework for understanding, assessing, and ultimately intervening to reduce parental…

Stress, social rank and leukocyte telomere length

Blood leukocytes are a heterogeneous mixture of cell types whose telomere lengths differ greatly, reflecting variation in stem cell turnover and recruitment, expansion and replacement of more mature cell types as well as variable telomere loss and…

Physical and mental health of mothers caring for a child with Rett syndrome

OBJECTIVES: Our goal was to investigate the physical and mental health of mothers who care for a child with Rett syndrome. METHODS: We assessed maternal physical and mental health by using the SF-12 version 1 physical component summary and mental…

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

Coping with interpersonal stress: role of big five traits

Seventy-one couples living in a stepfamily context reported interpersonal family stressors and related coping strategies daily for 1 week in a daily process study. The role of personality and of the stressful context in each of the spouse's coping…

Cancer incidence in parents who lost a child: a nationwide study in Denmark

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.…

The need for palliative care for patients with non-cancer diseases: a review of the evidence

The palliative care needs of patients with cancer are understood and managed well by specialist palliative care services. Patients dying of non-cancer diseases are rarely offered these services. A literature review was conducted to determine the…

Tags: 2001, Backlog, Cox S, Health Services Needs And Demand, Higginson I, Humans, International Journal of Palliative Nursing, Journal Article, Livesley B, Luddington L, Palliative Care/psychology, Patient Education as Topic, Psychological, Research Design, Stress, Terminal Care/psychology

Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families

Comfort care for terminally ill patients. The appropriate use of nutrition and hydration

OBJECTIVE--To determine the frequency of symptoms of hunger and thirst in a group of terminally ill patients and determine whether these symptoms could be palliated without forced feeding, forced hydration, or parenteral alimentation.…

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…

Measuring the Effects of an Animal-Assisted Intervention for Pediatric Oncology Patients and Their Parents: A Multisite Randomized Controlled Trial

OBJECTIVE: This multicenter, parallel-group, randomized trial examined the effects of an animal-assisted intervention on the stress, anxiety, and health-related quality of life for children diagnosed with cancer and their parents. METHOD: Newly…

The perceived benefit scales: measuring perceived positive life changes after negative events

The article focuses on a study that introduced measures of self-reported positive life changes after negative events. The study of the psychosocial consequences of negative events has been conducted largely using a deficit approach. In the past three…

Tags: 1998, anxiety, Backlog, Depression, Factor Analysis, Fisher R, Journal Article, Life Change Events, McMillen JC, Psychological, Psychology, Social Work Research, statistical, Stress

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