Browse Items · Pediatric Palliative Care Library

A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions

BACKGROUND: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for…

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…

A global measure of perceived stress.

Accelerated telomere shortening in response to life stress

Numerous studies demonstrate links between chronic stress and indices of poor health, including risk factors for cardiovascular disease and poorer immune function. Nevertheless, the exact mechanisms of how stress gets "under the skin" remain elusive.…

Adaptational process of parents of pediatric oncology patients

This study, based on grounded theory, explores the adaptational process of parents of pediatric oncology patients. Thirty-two Taiwanese parents (26 mothers and 6 fathers) were interviewed. Data were collected through individual in-depth and focus…

Always a burden? Healthcare providers' perspectives on moral distress

BACKGROUND: Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. OBJECTIVE: To explore clinical experiences, perspectives and perceptions of moral…

An overview of National Hospice Study findings

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…

Bereaved Parents’ and Siblings’ Reports of Legacies Created by Children With Cancer

This qualitative study explored bereaved parents’ and siblings’ reports of legacies created by children with advanced cancer. Participants included 40 families of children who died from cancer, with 36 mothers, 27 fathers, and 40 siblings (ages 8-18…

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…

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…

Causal links between stressful events, coping style, and adolescent symptomatology

In a longitudinal study, the causal links between different types of stressors, coping styles and adolescent symptomatology were investigated. A total of 94 adolescents and their mothers participated in three annual assessments of critical life…

Tags: 2000, Adaptation, Adolescent, Adolescent Behavior/psychology, Backlog, Female, Follow-up Studies, Humans, Journal Article, Journal Of Adolescence, Life Change Events, Male, Prospective Studies, Psychological, Psychological/psychology, Seiffge-Krenke I, Stress

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

Changes in mothers' basic beliefs following a child's bone marrow transplantation: the role of prior trauma and negative life events

This longitudinal study examined the relation between life stress and basic beliefs about self-worth and the benevolence and meaningfulness of the world among mothers of children undergoing bone marrow transplantation (BMT). One hundred mothers…

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.…

Complementary therapies for children undergoing stem cell transplantation: report of a multisite trial

BACKGROUND: Children undergoing stem cell transplant (SCT) experience high levels of somatic distress and mood disturbance. This trial evaluated the efficacy of complementary therapies (massage, humor therapy, relaxation/imagery) for reducing…

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

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…

Coping through emotional approach: a new look at emotion, coping, and health-related outcomes

Researchers studying stress and coping processes have attempted to identify which coping strategies are most adaptive in stressful encounters. A generally accepted conclusion has been that emotion-focused coping processes are associated with…

Tags: 2004, Adaptation, Adult, Austenfeld Jennifer L, Backlog, Emotions, Health Status, Humans, Journal Article, Journal Of Personality, Outcome Assessment (health Care), Psychological, Psychometrics, Stanton AL, Stress

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…

Coping with Dravet syndrome: parental experiences with a catastrophic epilepsy

The aim of this study was to investigate how parents cope with and care for a child with Dravet syndrome, a severe myoclonic epilepsy with three distinct stages. Twenty-four parents of children with Dravet syndrome participated in a semi-structured…

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…

Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home

OBJECTIVE: The growing shift toward home care services assumes that "being home is good" and that this is the most desirable option. Although ethical issues in medical decision-making have been examined in numerous contexts, home care decisions for…

Tags: 2006, Alexander E, Artificial, Backlog, Caregivers, Carnevale FA, Child, Davis M, Ethics, Family, Family Health, home care services, Humans, Journal Article, Pediatrics, Psychological, Rennick J, Respiration, Stress, Troini Rita

Describing the Psychosocial Profile and Unmet Support Needs of Parents Caring for a Child with a Life-Limiting Condition: A Cross-Sectional Study of Caregiver-Reported Outcomes

BACKGROUND: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and…

Tags: 2020, 2022 Special Edition 1 - Parent Perspectives, Burchell J, Caregiver, Collins A, Paediatrics, Palliative Care, Palliative Medicine, Psychological, Quality Of Life, Remedios C, Stress, Terminally Ill, Thomas K

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…

Diagnosing suffering: a perspective

The alleviation of suffering is crucial in all of medicine, especially in the care of the dying. Suffering cannot be treated unless it is recognized and diagnosed. Suffering involves some symptom or process that threatens the patient because of fear,…

Tags: 1999, Annals Of Internal Medicine, Backlog, Cassell EJ, Clinical Competence, Death and Euthanasia, Humans, Journal Article, Pain/diagnosis/therapy, Physician-patient Relations, Professional Patient Relationship, Psychological, Stress, Terminally Ill/psychology

Distraction, exposure therapy, counterconditioning, and topical anesthetic for acute pain management during needle sticks in children with intellectual and developmental disabilities

A behavior therapy approach for obtaining cooperation during needle sticks was provided to 8 pediatric patients with intellectual and developmental disabilities. Therapy was provided during mock needle sticks. Hand lotion was applied to simulate…

Do we need another "stress and caregiving" study?

1989

Tags: 1989, Backlog, Health Services Research, home care services, Humans, Journal Article, Psychological, Stress, The Gerontologist, Zarit SH

Easing of suffering in children with cancer at the end of life: is care changing?.

PURPOSE: In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought…

Emotion regulation in patients with rheumatic diseases: validity and responsiveness of the Emotional Approach Coping Scale (EAC)

BACKGROUND: Chronic rheumatic diseases are painful conditions which are not entirely controllable and can place high emotional demands on individuals. Increasing evidence has shown that emotion regulation in terms of actively processing and…

Emotionally focused interventions for couples with chronically ill children: a 2-year follow-up

Couples with chronically ill children are particularly at risk for experiencing marital distress. The study presented here is a 2-year follow-up of a randomized control trial that assessed the efficacy of Emotionally Focused Therapy (EFT) in…

Ethical considerations in end-of-life care and research

The goal of good palliative care is to relieve suffering and to improve quality of life. However, it is clear that access to palliative care is inconsistent. At least in part, these deficiencies exist because of a lack of solid evidence on which to…

Euthanasia in Europe

2001

Tags: 2001, Backlog, Belgium, Bernheim JL, Death and Euthanasia, Empirical Approach, Euthanasia/statistics & numerical data, Humans, Journal Article, Lancet, Netherlands, Paternalism, Psychological, 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…

Exploring perceptions of psychological services in a children's hospice in the United Kingdom

BACKGROUND: The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers…

Family function in families of children with Duchenne muscular dystrophy

This article investigates the relationships of child- and family-related variables with family function in families with children who have Duchenne muscular dystrophy. Child-related variables included level of disability (indicator: Barthel Index)…

Good-parent beliefs of parents of seriously ill children

IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE: To assess parents'…

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…

Informing social work practice through research with parent caregivers of a child with a life-limiting illness

Pediatric palliative care is an evolving field of practice in social work. As such, research plays a critical role in informing best social work practices in this area. For parents, caring for a child with a life-limiting illness (LLI) is a stressful…

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