Browse Items · Pediatric Palliative Care Library

"Safe passage": social work roles and functions in hospice care

What are social work's unique roles and functions in behalf of patients and their families in hospice care? The question is answered in the first phase of a Joint Research Project of social work faculty, hospice social workers and graduate social…

Tags: 1988, Aged, Backlog, Female, Hospices, Humans, Interprofessional Relations, Journal Article, Male, Moxley D, Professional-family Relations, Professional-patient Relations, Rusnack B, Schaefer SM, Social Work, Social Work in Health Care, Terminal Care

A communication strategy and brochure for relatives of patients dying in the ICU

BACKGROUND: There is a need for close communication with relatives of patients dying in the intensive care unit (ICU). We evaluated a format that included a proactive end-of-life conference and a brochure to see whether it could lessen the effects of…

A gap between the intention of the Swedish law and interactions between nurses and children of patients in the field of palliative oncology - The perspective of nurses

PURPOSE: Children who have a parent with incurable cancer are in a vulnerable situation and the Swedish law tries to protect them. This article aims to explore the interactions between nurses and children of patients with incurable cancer from the…

Tags: 2016, Adolescent, Adult, Akesson H, Attitude Of Health Personnel, Child, Child Of Impaired Parents/lj [legislation & Jurisprudence], European Journal Of Oncology Nursing, Glasdam S, Hospice And Palliative Care Nursing, Humans, Intention, Karidar H, Neoplasms/nu [nursing], Oncology 2017 List, Oncology Nursing, Parents, Professional-family Relations, Sweden

A longitudinal method of teaching pediatric palliative care to interns: preliminary findings regarding changes in interns' comfort level

OBJECTIVE: A longitudinal pediatric palliative care curriculum was introduced into the pediatric residency program at the University of California, Los Angeles. The present study explores the possible effects of this curriculum on the interns'…

A Qualitative Investigation of Fathers' Experiences of Looking After a Child with a Life-Limiting Illness, In Process and In Retrospect

Child life-limiting illnesses are those from which there is no reasonable hope of cure and from which children will die. Only recently have these illnesses been recognized as a discrete category and thus relatively little research has focused…

Addressing transition to adult health care for adolescents with special health care needs

OBJECTIVE: To determine the factors associated with addressing the transition from pediatric to adult-oriented health care among US adolescents with special health care needs. METHODS: Data for 4332 adolescents, 14 to 17 years of age, from the…

Advanced care planning discussions with adolescents and young adults with cancer

After the child dies

The parents of a child who dies feel the emotions of shock, mourning, and confusion as they slowly come to accept the finality of the child's death. In contemporary America they frequently feel isolated and abandoned. The individuals and institutions…

Tags: 1976, Attitude To Death, Backlog, Child, Death, Emotions, Female, Fischhoff J, Humans, Journal Article, Male, O'Brien N, Parents, Professional-family Relations, Self-Help Groups, The Journal Of Pediatrics

Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients

OBJECTIVE: The role of family interests in medical decision making is controversial. Physicians who routinely treat incompetent patients may have preferred strategies for addressing family interests as they are encountered in surrogate medical…

Because statistics don't tell the whole story: a call for comprehensive care for children with cancer

Bereavement care in the critical care setting

Bereavement care in critical care units should involve providing support and counseling for the family members prior to death, immediately after the death has occurred, and at least some follow-up in the future months. These are crucial moments: Once…

Tags: 1997, Adaptation, Aftercare, Backlog, Bereavement, Clinical Competence, Critical Care Nursing Quarterly, Critical Care/psychology, Cultural Diversity, Family/psychology, Humans, Journal Article, Professional-family Relations, Psychological, Social Support, SSHRC CURA, Warren NA

Bereavement support for families following the death of a child from cancer: experience of bereaved parents

This study explored the experiences and needs of nine parents who had received hospital-based bereavement support following the death of their child from cancer, in Western Australia. Six prominent themes emerged from thematic data analysis: personal…

Caring Decisions: The Development Of A Written Resource For Parents Facing End-of-life Decisions

BACKGROUND: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical…

Cerebral palsy: what parents and doctors want to know

2003

Tags: 2003, Adolescent, Backlog, Bmj (clinical Research Ed.), Cerebral Palsy/diagnosis/etiology/therapy, Child, Developmental Disabilities/etiology, Forecasting, Humans, Infant, Journal Article, Newborn, Parents, Patient Education as Topic, Physician's Role, Preschool, Professional-family Relations, Research/trends, Rosenbaum P

Characteristics of family conferences at the bedside versus the conference room in pediatric critical care

OBJECTIVE: To compare characteristics of family conferences at the bedside vs. the conference room in the PICU. DESIGN: Single-site, cohort survey study. SETTING: Thirty-three bed academic PICU in an urban setting. PARTICIPANTS: Ten PICU physicians…

Close to home

2015-03

Tags: 2015, Backlog, Community Networks, Grief, Humans, JAMA Pediatrics, Journal Article, Leukemia, Physicians, Professional-family Relations, Rosenberg AR, Social Support

Communicating about prognosis: ethical responsibilities of pediatricians and parents

Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because…

Tags: 2014, Adolescent, Adult, Backlog, Child, Communication, Female, Humans, Joffe S, Journal Article, Mack JW, Male, Parents, Pediatrics, Physician-patient Relations, Professional-family Relations, Prognosis, Terminal Care

Communication between physician, patient, and family in the pediatric intensive care unit

Communication with parents of children with cancer

The purpose of this study was to assess the receptiveness of parents to information given about their child's life threatening illness. Three months after the child's diagnosis, an independent interviewer, using a structured questionnaire,…

Compassionate silence in the patient-clinician encounter: a contemplative approach

In trying to improve clinician communication skills, we have often heard clinicians at every level admonished to "use silence," as if refraining from talking will improve dialogue. Yet we have also noticed that this "just do it," behavior-focused…

Tags: 2009, Back AL, Backlog, Bauer-Wu SM, Communication, Empathy, Halifax J, Humans, Journal Article, Journal of Palliative Medicine, Physician-patient Relations, Professional-family Relations, Rushton CH, Truth Disclosure

Conflict in the care of patients with prolonged stay in the ICU: types, sources, and predictors

OBJECTIVE: To determine types, sources, and predictors of conflicts among patients with prolonged stay in the ICU. DESIGN AND SETTING: We prospectively identified conflicts by interviewing treating physicians and nurses at two stages during the…

Cornerstone care for families of children with life-threatening illness.

Forty-five families of children with life-threatening illnesses for up to 10 years were interviewed. The children required many medical disciplines, as well as social, educational and material provisions, and parents described the complex and often…

Creation of a neonatal end-of-life palliative care protocol

OBJECTIVE: To create a protocol delineating the needs of patients, families, and staff necessary to provide a pain-free, dignified, family-, and staff-supported death for newborns who cannot benefit from intensive, life-extending, technological…

Crisis intervention strategies when caring for families of children with cancer

A diagnosis of childhood cancer is an unexpected life event that often precipitates a situational crisis for all family members. Required cancer treatments and other ongoing stressors for both child and family will significantly disrupt the family's…

Tags: 2000, Adult, Backlog, Child, Crisis Intervention/methods, Family/psychology, Hendricks-Ferguson VL, Humans, Intervention, Interventions, Journal Article, Journal Of Pediatric Oncology Nursing, Neoplasms/nursing/psychology, Nursing Assessment/methods, Parent caregivers, Patient Care Planning, Professional-family Relations

Death Talk: Basic Linguistic Rules And Communication In Perinatal And Paediatric End-of-life Discussions.

OBJECTIVE:
This paper considers clinician/parent communication difficulties noted by parents involved in end-of-life decision-making in the light of linguistic theory.

METHODS:
Grice's Cooperative Principle and associated maxims, which enable…

Decision making and satisfaction with care in the pediatric intensive care unit: findings from a controlled clinical trial

OBJECTIVE: To facilitate critical decision making and improve satisfaction with care among families of patients in a pediatric intensive care unit. DESIGN: Prospective observational study followed by a nonrandomized controlled trial of a clinical…

Digital Clinical Communication for Families and Caregivers of Children or Young People With Short- or Long-Term Conditions: Rapid Review

BACKGROUND: The communication relationship between parents of children or young people with health conditions and health professionals is an important part of treatment, but it is unclear how far the use of digital clinical communication tools may…

Tags: 2018, Armoiry X, Atherton H, Caregivers, Child Health, Children, Court R, digital clinical communication, Family, Griffiths F, January 2018 List, Journal Of Medical Internet Research, Phelps EE, Professional-family Relations, Sturt J, Sutcliffe P, Taggart F, Walker CL, Young Adult

Dimensions of the role of the social worker in palliative care

There has been very little research focusing on the role of the social worker in a specialist palliative care service. A qualitative research methodology was used which sought to capture the essence of that role, as perceived by those carrying it…

Tags: 2000, Anxiety/rehabilitation, Attitudes, Backlog, Great Britain, Health Knowledge, Humans, Journal Article, Judgment, Palliative Care/organization & Administration, Palliative Medicine, Practice, Professional Practice, Professional-family Relations, Questionnaires, Sheldon FM, Social Work/organization & administration

Disease trajectories and ACT/RCPCH categories in paediatric palliative care

The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to…

Do-Not-Resuscitate Orders in the Neonatal ICU: Experiences and Beliefs Among Staff

OBJECTIVES: Studies in adult patients have shown that do-not-resuscitate orders are often associated with decreased medical intervention. In neonatology, this phenomenon has not been investigated, and how do-not-resuscitate orders potentially affect…

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…

Engaging Fathers in Pediatric Palliative Care Research

Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A…

Evidence for healing interventions with perinatal bereavement

The purpose of this article is to explore the concept of perinatal grief and evidence-based healing interventions for it. The loss of a pregnancy or death of an infant causes profound grief, yet society has long minimized or ignored this grief, which…

Exhaust All Measures: Ethical Issues In Pediatric End-of-life Care

The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for…

Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study

BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by…

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…

Exploring The Spiritual Needs Of Families With Seriously Ill Children

Although we know that families of seriously ill children experience spiritual distress, especially at the end of the child's life, there is little information on the specific spiritual needs of families. In order to develop further training for…

Factors influencing parental readiness to let their child with cancer die

BACKGROUND: One in four cases of childhood cancer is incurable. In these cases death can usually be anticipated and therefore preceded by a phase of palliative care. For parents, preparing to let their child die is an extraordinarily painful process.…

Family Conferences In The Neonatal Icu: Observation Of Communication Dynamics And Contributions.

Abstract
OBJECTIVES:
Clinicians in the neonatal ICU must engage in clear and compassionate communication with families. Empirical, observational studies of neonatal ICU family conferences are needed to develop counseling best practices and to train…

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…

Browse Items (117 total)