Browse Items · Pediatric Palliative Care Library

Perceptions Of Palliative Care In The Nicu.

BACKGROUND AND PURPOSE:
The American Academy of Pediatrics supports palliative care (PC) for all children with life-threatening illnesses. Thus, many neonatal intensive care unit (NICU) patients and their families could benefit from PC. Our study…

Primary care supports for children with chronic health conditions: identifying and predicting unmet family needs

OBJECTIVE: To examine unmet needs among families of children with chronic health conditions treated in primary care settings and to identify predictors of these needs. METHOD: Primary care physicians referred 83 caregivers of children with chronic…

Posttraumatic growth in former Vietnam prisoners of war

This study examined posttraumatic growth in 30 male veterans captured and held as prisoners of war during the Vietnam War. Participants were assessed with structured diagnostic interviews administered by trained clinicians as well as with the…

The impact of ethical and legal decision-making in neonatal intensive care on psychosocial wellbeing of the health care professionals the overview of the HUNIC Project study design

The paper introduces the multidisciplinary HUNIC project, which is partly based on the EURONIC study. The objective of the HUNIC study is to assess the attitude and opinion of healthcare providers in Hungarian NICUs about end-of-life decisions, the…

Spirituality in patients with advanced illness: The role of symptom control, resilience and social network

In this study, we analyzed the relationships among clinical, emotional, social, and spiritual dimensions of patients with advanced illness. It was a cross-sectional study, with a sample of 108 patients in an advanced illness situation attended by…

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…

A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments

Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of…

Tags: 2023, abdominal pain, Adolescent, Analgesia, Analgesics Opioid, Anthropology Cultural, Caes L, Child, Child Parent Relation, Chronic Pain, Cochrane Database of Systematic Reviews, Complex Regional Pain Syndrome, cultural anthropology, Disease Severity, endometriosis, ethnography, Family, Family Life, February List 2024, Fibromyalgia, Forbat L, France E, Headache, Health Care Personnel, Health Service, Human, Humans, inflammatory bowel disease, Jordan A, juvenile rheumatoid arthritis, migraine, musculoskeletal pain, narcotic analgesic agent, Noyes J, outcome assessment, Pain Assessment, Pain Severity, patient-reported outcome, pediatric patient, Peer Group, Personal Experience, Prognosis, Quality Of Life, racism, Review, Sibling, Silveira Bianchim M, Social Care, Social Isolation, Social Support, Social Work, Systematic Review, Thomson K, Turley R, Uny I, Wellbeing

Bereaved Parents' Perspectives on Informal Social Support: “What Worked for You?”

This study identified and explored the informal social supports that bereaved parents found helpful following the death of their primary school-aged child. Ten participants were interviewed using a semistructured interview schedule. Data were…

Tags: 2013, Backlog, Gear R, Health Promotion, innovation, Journal Article, Journal of Loss and Trauma, Loss, parental bereavement, Social Support

Peer relationships of bereaved siblings and comparison classmates after a child's death from cancer

OBJECTIVES: To compare peer relationships among bereaved siblings and matched classmates, and to examine gender, grade level, and time since death as moderators. METHODS: Families were recruited from cancer registries at four hospitals 3-12 months…

Parental support needs during pediatric resuscitation: A systematic review

Background Resuscitation of a child is one of the most critical times that parents need support, and parental support is fundamental to providing family-centered care in high acuity settings. The aim of this systematic review was to appraise and…

Tags: 2022, Arshadi-Bostanabad M, Ghavi A, Hassankhani H, Health Services Needs And Demand, Heidarzadeh M, International Emergency Nursing, July 2022 List, Namdar-Areshtanab H, Parents, Pediatrics, Powers K, Resuscitation, Social Support, Systematic Review

The impact of care-giving on care-givers: factors associated with the psychological well-being of people supporting a dementing relative in the community

The aim of this paper is to present findings concerning a variety of factors expected to influence, either directly or indirectly as mediators, the psychological well-being of persons caring for a dementing relative in the community. The sample…

Tags: 1984, Adaptation, Aged, Backlog, Dementia/therapy, Family, Female, Gilhooly ML, Home Nursing/psychology, Humans, Journal Article, Male, Morale, Psychological, Social Environment, Social Support, The British Journal Of Medical Psychology

ABC of palliative care. Special problems of children

1998

Tags: 1998, Backlog, Bereavement, Bmj (clinical Research Ed.), Child, Child Health Services, Child welfare, Family Health, Goldman A, Great Britain, Humans, Journal Article, Pain Measurement, Pain/etiology, Palliative Care, Preschool, Social Support

Factors influencing death at home in terminally ill patients with cancer: systematic review

OBJECTIVES: To determine the relative influence of different factors on place of death in patients with cancer. DATA SOURCES: Four electronic databases-Medline (1966-2004), PsycINFO (1972-2004), CINAHL (1982-2004), and ASSIA (1987-2004); previous…

Quality of social support and associated social and psychological functioning in women with rheumatoid arthritis

Investigated the relationship between health status, social integration, qualitative aspects of social support, and social and psychological functioning in 194 women (aged 21–65 yrs) with rheumatoid arthritis. Ss completed a telephone interview that…

Tags: 1990, 21–65 yr old females with rheumatoid arthritis, Adjustment, Backlog, Goodenow C, Grady KE, Health Psychology, Journal Article, Mental Health, quality of social support, Reisine ST, Rheumatoid Arthritis, social & psychological functioning, Social Interaction, Social Support, Social Support and Chronic Pain

Indicators of family resilience after the death of a child

The aim of this study was to identify and describe resilience qualities in families after losing a child. Questionnaires, including an open-ended question, were utilized to collect data independently from the parents and siblings of the deceased in…

Grandma's hands: parental perceptions of the importance of grandparents as secondary caregivers in families of children with disabilities

This study examines parental perceptions of the importance of grandparents as providers of routine care to children with disabilities and the impact of such assistance on parental well-being. Data are drawn from a survey and follow-up interactive…

Having a brain tumour: A journey through life

Differences and similarities between mothers and fathers of premature children: a qualitative study of parents' coping experiences in a neonatal intensive care unit.

BACKGROUND: The aim of this study was to explore and describe the coping experiences of parents to children admitted to a neonatal unit., METHODS: A qualitative research approach was chosen, using in-depth interviews with eight fathers and eight…

Families' Priorities In Life-limiting Illness: Improving Quality With Online Empowerment

OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose…

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…

End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology: research to evidence-based practice guidelines

Participating in end-of-life decisions is life altering for adolescents with incurable cancer, their families, and their healthcare providers. However, no empirically developed and validated guidelines to assist patients, parents, and healthcare…

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…

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…

Testing the grief to personal growth model using structural equation modeling.

The belief that loss can result in growth has been hypothesized for centuries.Yet, traditional grief theories have viewed grief work as a process of resolving grief and returning to normal. Formal conceptualizations of grief to growth models have…

Tags: 2002, Adult, Backlog, Death studies, Grief, Hogan NS, Humans, Journal Article, Models, Parents/psychology, Personality Development, Schmidt LA, Social Support, Theoretical

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…

The impact of a palliative medicine consultation service in medical oncology.

This prospective study of consecutive patients describes the palliative medicine consult service in a tertiary level cancer center and its impact on patient care. All inpatients/outpatients referred to the Palliative Medicine Program in a 4-month…

Analysis of the circumstances at the end of life in children with cancer: Symptoms, suffering and acceptance

AbstractBackground: In an effort to improve the quality of life of children with cancer, this study analyzes the signs and symptoms at the end of life in such children. It is hoped that these data will contribute to the development of appropriate…

Grief and growth in bereaved siblings: Interactions between different sources of social support

The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings’ grief and grief-related growth and to examine whether nonparental sources of social support…

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…

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…

Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study

BACKGROUND: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare…

Factors Influencing The Uptake Of Neonatal Bereavement Support Services – Findings From Two Tertiary Neonatal Centres In The Uk

Background

Research on perinatal bereavement services is limited. The aim of the study was to compare the uptake of bereavement support services between two tertiary neonatal units (NNU), and to investigate influencing factors.

Method

The medical…

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…

Community resources for children with special healthcare needs

1997

Tags: 1997, Backlog, Blasco PA, Child, Chronic Disease, Community Health Services, Family/psychology, Health Services Needs And Demand, Humans, Information Services, Johnson CP, Journal Article, Pediatric Annals, Pediatrics/organization & Administration, Physician's Role, Social Support, United States

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