Browse Items · Pediatric Palliative Care Library

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

Vulnerability and resilience to combat exposure: can stress have lifelong effects?

The purpose of this study was to examine whether appraisals of desirable and undesirable effects of military service mediated the effect of combat stress on posttraumatic stress disorder (PTSD) symptoms in later life in 1,287 male veterans, aged…

Unraveling the mystery of health: how people manage stress and stay well

Tags: 1987, Antonovsky A, Book/Book Section, Health Behavior, Psychological, Social Adjustment, Stress

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…

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

Preventing psychosocial impairment in siblings of terminally ill children

A review of the literature provides the basis for a discussion of the impact of sibling death on healthy children whose emotional needs may be unattended both by parents and professionals. Factors which may deter hospice practitioners from delivering…

Tags: 1989, Adaptation, Adolescent, Backlog, Bendor SJ, Child, Death, Family/psychology, Grief, Humans, Journal Article, Parent caregivers, Preschool, Psychological, Psychological/prevention & control, Sibling Relations, Stress, The Hospice Journal

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

Trauma and growth in Canadian carers

The phenomenon of post-traumatic growth has been explored within the context of HIV disease in only a limited fashion. One hundred and seventy-six bereaved HIV/AIDS carers located all over Canada responded to a questionnaire about their experiences;…

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…

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

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…

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

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

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)…

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…

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…

A global measure of perceived stress.

Patterns of children's coping with life stress: implications for clinicians

In a study of children's patterns of coping with daily stressors, boys and girls 9-17 years old were asked to complete a coping checklist in response to one of four types of stressors--school, parents/family, siblings, or peer/interpersonal. Patterns…

Tags: 2000, Adaptation, Adolescent, Backlog, Child, Danovsky M, Defense Mechanisms, Donaldson D, Female, Humans, Journal Article, Male, Personality Inventory, Prinstein MJ, Psychological, Psychological/psychology, Spirito A, Stress, The American Journal Of Orthopsychiatry

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…

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.…

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'…

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

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

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…

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…

Posttraumatic stress and general distress among parents of children surviving a brain tumor.

In this preliminary study we examined both posttraumatic stress and general distress among parents of children diagnosed with a brain tumor. Participants included 28 parents of children diagnosed with a brain rumor who completed self-report measures…

Tags: 2001, Backlog, Children, Children's Health Care, Disorders, Fuemeller B, Journal Article, Longitudinal Studies, Marx B, Mullins L, Parents, Post-traumatic, Psychological, Stress

Rethinking the role of tube feeding in patients with advanced dementia

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

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…

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…

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

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…

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