Browse Items · Pediatric Palliative Care Library

Parents' attitudes towards a difficult situation resulting from the chronic disease of their child

INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation…

Parents' attitudes towards a difficult situation resulting from the chronic disease of their child

INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation…

Factors that Contribute to Bereaved Parents' Perceptions of Neonatal Palliative Care: A Systematic Literature Review

OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families…

Tags: 2022, Analysis, and, Article, Beltran SJ, CARE, Experience, Family, Female, for, guideline, Hamel M N, Human, Infant, intensive, Items, Male, meta, Meta-analyses, Neonatal, Newborn, October 2022 List, Palliative, Parent, Perception, Practice, Preferred, Psychological, Quality, Reporting, Review, Reviews, Satisfaction, systematic, The American Journal of Hospice & Palliative Care, Therapy, Unit, Units

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…

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…

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…

Not ready for hospice: characteristics of patients in a pre-hospice program

CONTEXT: There are many patients with terminal illness for whom hospice care would be appropriate, but they either never enroll or enroll very late. In a pre-hospice program designed to help patients make the transition into hospice, we observed that…

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

A meta-analytic review of benefit finding and growth

The authors conducted a meta-analysis to examine the relations of benefit finding to psychological and physical health as well as to a specific set of demographic, stressor, personality, and coping correlates. Results from 87 cross-sectional studies…

Tags: 2006, Adaptation, Affect, Attitude, Backlog, Health Status, Helgeson VS, Humans, Journal Article, Journal Of Consulting And Clinical Psychology, Parent caregivers, Post-Traumatic/psychology, Psychological, Quality Of Life/psychology, Reynolds KA, Stress Disorders, Tomich PL

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…

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…

End-Of-Life Research as a Priority for Pediatric Oncology

Approximately 2,200 children and adolescents die a cancer-related death each year in the United States; of these, almost 90% will die while experiencing 2 to 8 troubling symptoms. With improved symptom control and end-of-life care, these patients…

The reflections you get': an exploration of body image and cachexia.

BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people…

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…

Things that help and hinder adolescent sibling bereavement

A taxonomy of the things that help and hinder adolescents' sibling bereavement was developed from the responses of 140 bereaved adolescents to the questions What helped you cope with your sibling's death? and What made it harder to cope with your…

The Role of Social Support in Coping with Daily Pain among Patients with Rheumatoid Arthritis

Using a daily process methodology, the current study examined the role of social support in coping and pain severity among patients with rheumatoid arthritis (RA). Seventy-three adults with RA completed a structured record twice daily for one week on…

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…

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…

One month after diagnosis: quality of life, coping and previous functioning in siblings of children with cancer

BACKGROUND: The aim of the present study is to describe the quality of life (QoL) of siblings of children with cancer and to predict it according to their health before the diagnosis of cancer in the ill child and their ways of coping with the…

Effects of sudden infant death on bereaved siblings: a comparative study

This study investigated behavioural problems (as rated by mothers) in 38 children who had been suddenly bereaved of an infant sibling between 3 and 27 months previously. These children were compared with 40 children matched on age, gender, family…

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…

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

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…

Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents

BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss. PROCEDURE: We contacted parents in Sweden who had lost a child to a…

Children's experiences of cystic fibrosis: a systematic review of qualitative studies

BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children…

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…

Control beliefs, coping efforts, and adjustment to chronic pain

This study examined factors hypothesized to influence adaptation to chronic pain in 118 patients who were interviewed to gauge adjustment (psychological functioning, medical services utilization, and activity level) and several widely discussed…

Tags: 1991, Adaptation, Backlog, Chronic Disease, Female, Humans, Internal-External Control, Jensen MP, Journal Article, Journal Of Consulting And Clinical Psychology, Karoly P, Male, Middle Aged, Pain, Pain Measurement, Psychological, Sick Role

A theory of healing in the aftermath of youth suicide. Implications for holistic nursing practice

The purpose of this family-focused, grounded-theory study was to develop a substantive theory that explains how individual family members heal in the aftermath of youth suicide. Individual healing following youth suicide is conceptualized as a…

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…

The use of the Impact on Sibling scale with families of children with chronic illness and developmental disability

OBJECTIVE: This study evaluated the Impact on Sibling scale, a six-item measure of parents' perception of the effects of a child's illness on healthy siblings. METHODS: Participants were 122 parents of a child with chronic illness, developmental…

Bereavement and personal growth

1987

Tags: 1987, Adaptation, Backlog, Bereavement, Grief, Journal Article, Journal Of Humanistic Psychology, Kessler BG, Personality Development, Psychological

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…

Family support in pediatric palliative care: how are families impacted by their children's illnesses?

CONTEXT: Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their children's illnesses. By understanding how families are impacted, programs can refine their service…

When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories

BACKGROUND: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based…

Psychiatric morbidity in children with medically unexplained chronic pain: diagnosis from the pediatrician's perspective

CONTEXT: There is very little general evidence to support the clinical management, particularly diagnosis, of medically unexplained chronic pain (UCP) in children. OBJECTIVE: We sought to assess in children with UCP if clinical characteristics held…

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…

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