Browse Items · Pediatric Palliative Care Library

Differences in understanding of specialist palliative care amongst service providers and commissioners in South London

This paper describes a study that sought to identify service providers' and commissioners' understanding of specialist palliative care within the context of changing service provision in one area of South London. Using a formative evaluation…

Training health professionals in caring for dying children and grieving families

In most industrialized countries today, the death of a child is a rare phenomenon. When it occurs, however, it is usually within a hospital setting, after the child has received complex and often long-term medical care aimed at curing or controlling…

Tags: 1997, Attitude Of Health Personnel, Backlog, Caregivers/psychology, Child, Child Health Services, Continuing/methods, Death, Death studies, Education, Family, Home Nursing, Humans, Journal Article, Medical, Palliative Care, Papadatou D, Parent caregivers, Questionnaires

Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood

BACKGROUND: As an increasing number of patients with chronic conditions of childhood survive to adulthood, experts recommend that young adults with chronic conditions transfer from child-focused to adult-focused primary care. Little, however, is…

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…

Beliefs about pain among professionals working with children with significant neurologic impairment

2001

Tags: 2001, Adult, Attitude Of Health Personnel, Backlog, Caregivers, Child, Child welfare, Developmental Medicine and Child Neurology, Female, Health Care Surveys, Humans, Journal Article, Male, Nervous System Diseases/complications, O'Donnell ME, Oberlander T, Pain, Physician-patient Relations, Quality Of Life

[Difficulties in communication with parents of pediatric cancer patients during the transition to palliative care]

INTRODUCTION: Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. AIM: To investigate the timing and manner of communication with parents concerning the introduction…

Measured enthusiasm: does the method of reporting trial results alter perceptions of therapeutic effectiveness?

OBJECTIVE: To compare clinicians' ratings of therapeutic effectiveness when different trial end points were presented as percent reductions in relative compared with absolute risk and as numbers of patients treated to avoid one adverse outcome.…

Predictors Of Intention To Refer To Pediatric Palliative Or Hospice Care

The purpose of this descriptive correlational study was to determine whether nurse characteristics, level of comfort with care of the dying, and spirituality predict intention to refer and timing of referral to pediatric palliative/hospice care. The…

Measuring the quality of dying

2001

Tags: 2001, Attitude Of Health Personnel, Attitude To Death, Attitude To Health, Backlog, Chronic/psychology, Family/psychology, Health Services Research/methods/standards, Human, Journal Article, Journal of Palliative Medicine, Kidney Failure, Moss AH, Quality Of Health Care, Quality Of Life, Research Design/standards, Terminal Care/psychology/standards

A paradigm of integrative care: healing with curing throughout life, "being with" and "doing to"

We are presenting an integrative paradigm of care. We will review the basis for its evolution from prior series and parallel models. In this paradigm, healing and palliation (when indicated) are introduced in parallel with curative measures as soon…

Tags: 2005, Attitude Of Health Personnel, Backlog, Bereavement, Child, Humans, Journal Article, Journal Of Perinatology, Medical, Milstein J, Models, Palliative Care, Pediatrics, Philosophy, Psychological

Nurses' attitudes to pain management during routine venepuncture in young children

Venepuncture is one of the most commonly performed clinical procedures carried out on young children. Evidence indicates inconsistency in the use of pain management strategies during these procedures. A survey method was used to explore nurses' views…

Symptoms suffered by life-limited children that cause anxiety to UK children's hospice staff

BACKGROUND: Very little is published about the symptom profile of children with life-limiting illnesses other than cancer. METHOD: A postal questionnaire was sent to children's hospice staff who were asked to identify symptoms experienced by…

Conducting feminist research in nursing: personal and political challenges

The challenges of doing feminist nursing research include both personal and political elements. Some of these arise from the threefold influences of being nurses, women, and academics within a larger social context that may be antithetical to…

Tags: 1998, Attitude Of Health Personnel, Backlog, Choice Behavior, Female, Feminism, Health Care For Women International, Humans, Journal Article, Maxwell-Young L, Nurses/psychology, Nursing Methodology Research/methods/standards, Olshansky E, Politics, Research Personnel/psychology, Steele R, Women/psychology

Emotion work in the palliative nursing care of children and young people

The nurse's role in supporting and caring for children and young people with life-limiting illness/conditions and their families requires specialist expertise. This domain can be one of the most emotionally challenging areas of practice. The concept…

The views and experiences of fathers regarding their young child's intellectual and developmental disability diagnosis: Findings from a qualitative study.

AIMS AND OBJECTIVES: To report the views and experiences of fathers following their child's diagnosis of an intellectual and developmental disability (IDD)., BACKGROUND: There is a growing interest in understanding the experiences of fathers of…

Family And Healthcare Professionals’ Perceptions Of A Pilot Hospice At Home Programme For Children: A Qualitative Study

Background
Parents commonly report a significant improvement in quality of life following the provision of hospice and supportive care and have identified a need for such a service in the home. The purpose of this study was to understand the…

Prioritization of future research topics for children's hospice care by its key stakeholders: a Delphi study

The Delphi process, widely used in health research to seek consensus on key issues amongst large stakeholder groups, was adopted to allow families, hospice staff/volunteers and linked professionals to identify and prioritize future research…

Exploring the experiences and perspectives of families using a children's hospice and professionals providing hospice care to identify future research priorities for children's hospice care

The main objective of this study is to generate a list of priority topics for children's hospice care research in Scotland from the perspective of its key stakeholders. The method consists of qualitative semi-structured interviews with families using…

School nurses' support for bereaved students: a pilot study

Children may have difficulty with schoolwork because of grief over the death of an important person in their lives. School nurses provide support to these children. This pilot study consisted of a Web-based survey completed by 6 school nurses in a…

Tags: 2006, Adult Aged, Attitude Of Health Personnel, Backlog, Bereavement Child Clinical Competence/standards Female Focus Groups Humans Middle Aged Needs Assessment, Journal Article, Journal of School Nursing, Lohan JA, Non-U.S. Gov't School Nursing/education/organization & administration Self EfficacySocial Support Students/psychology/statistics & numerical data Washington Workload, Nurse's Role/psychology Nursing Assessment Nursing Methodology Research Nursing Staff/education/organization & administration/psychology Pilot Projects Questionnaires Research Support, PedPal Lit

Pain in pediatric oncology: do the experiences of children and parents differ from those of nurses and physicians?

Diagnosis and treatment of pain are central components in the care of children with cancer. The aim of the present study was to compare the viewpoints of children and parents with those of professionals, on different aspects of pain in children with…

Ethical Issues In Neonatal Intensive Care Units.

Recent progress in neonatal care have significantly improved the prognosis and chances of survival of critically ill or extremely preterm neonates and have modified the limits of viability. However, in some circumstances, when the child's death can…

Tags: 2016, Adult, April 2016 List, Attitude Of Health Personnel, Chen X, Child, Europe, Euthanasia Passive/ethics, Humans, Infant Newborn, Intensive Care Neonatal/ethics, Italy, Journal of Maternal, Fetal and Neonatal Medicine, Liu J, Morals, Parents, Wang XL, Withholding Treatment/ethics

Development And Evaluation Of A Palliative Care Curriculum For Cystic Fibrosis Healthcare Providers.

BACKGROUND:
Primary palliative care refers to basic skills that all healthcare providers can employ to improve quality of life for patients at any stage of disease. Training in these core skills is not commonly provided to clinicians caring for…

Human research ethics committees: issues in palliative care research

Palliative care research is fraught with many difficulties. There are challenges associated with conducting research with vulnerable patients and families, difficulties with obtaining informed consent, and methodological complexities. Thoughtful…

Preparation for oncology settings: what hospice social workers say they need

According to recent data, 78 percent of hospice social workers' direct practice hours are spent with patients and families diagnosed with terminal cancer. A national sample of 108 hospice social workers participated in an exploratory study…

Tags: 1999, Attitude Of Health Personnel, Backlog, Bronstein LR, Cooperative Behavior, Florida, Health & Social Work, Health Services Research, Hospice Care/manpower/methods, Humans, Inservice Training, Journal Article, Kovacs PJ, Needs Assessment, Neoplasms/nursing, Oncologic Nursing/education/manpower, Patient Care Team, Professional Competence, Social Work/education

Death by request in the Netherlands: facts, the legal context and effects on physicians, patients and families

Case study: the Interact Home Telehealth Project

Two home telehealth technologies (the Intel Health Guide and the Apple iPad) were trialled by four clinical services of the Hunter New England Local Health District. The iPad was selected by the Paediatric Palliative Care Service, the Stroke Service…

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

Pediatric palliative care: feedback from the pediatric intensivist community

With the emergence of a more formalized field of pediatric palliative care (PPC), it is important for individuals and organizations involved in PPC to gather input from patients with life-threatening/life-limiting conditions, their families, and…

Reviewing audit: barriers and facilitating factors for effective clinical audit

OBJECTIVE: To review the literature on the benefits and disadvantages of clinical and medical audit, and to assess the main facilitators and barriers to conducting the audit process. DESIGN: A comprehensive literature review was undertaken through a…

Elective Ventilation To Facilitate Organ Donation In Infants With Anencephaly: Perinatal Professionals’ Views And An Ethical Analysis.

AIM:
Following the elective ventilation and referral for organ donation of an infant with anencephaly, we sought local perinatal professionals' views of this practice.

METHODS:
Anonymous online survey: demographics, ethical viewpoints and potential…

Whom are we comforting? An analysis of comfort medications delivered to dying neonates

Trisomy 18: A survey of opinions, attitudes, and practices of neonatologists

We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal…

Tags: 2016, Adult, American Journal of Medical Genetics Part A, Article, Attitude Of Health Personnel, Attitude To Abortion, Biggio JR, Caucasian, Christian, Chromosomes Human Pair 18, Clinical Practice, Correlation Analysis, December 2017 List, Demography, Disease Management, Disease Severity, Edwards RK, Family, Female, Fetus Malformation, Health Care Surveys, Human, Humans, Intellectual Impairment, Jacobs AP, Male, Marriage, Medical Decision Making, Medical Society, Neonatologist, Neonatologists/px [psychology], Newborn Care, Normal Human, Outcome Assessment (health Care), Palliative Care, Palliative Therapy, Parental Attitude, Philips JB 3rd, Physician Attitude, Practice Patterns Physicians', Prenatal Diagnosis, Priority Journal, Race Difference, Resuscitation, Robin NH, Subramaniam A, Survival Rate, Tang Y, Trisomy 18, Trisomy/di [diagnosis], United States

A qualitative study of health care professionals’ views and experiences of paediatric advance care planning

Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health…

Quality assurance in palliative care: some of the problems

This review considers some of the difficulties associated with quality assurance in the context of palliative care. In particular, it will focus on the key question of who should be responsible for assessing quality and the problems of over-reliance…

Tags: 1995, Attitude Of Health Personnel, Attitude To Health, Backlog, European Journal Of Cancer Care, Faulkner A, Health Care/organization & administration, Hospice Care/organization & administration, Human, Ingleton C, Journal Article, Quality Assurance

The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan

The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and…

Hospital for the children

2006

Tags: 2006, Attitude Of Health Personnel, Backlog, Cancer Care Facilities/organization & administration, Child, England, Hospital Planning/organization & administration, Hospital/organization & administration/psychology, Hospitals, Houlston A, Humans, Journal Article, Nurse's Role, Nursing Staff, Nursing Standard, Oncologic Nursing/organization & administration, Pediatric Nursing/organization & administration, Pediatric/organization & Administration, PedPal Lit

Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe

The objective of this study was to explore the current practice and attitudes of pediatric cardiologists in the United States and Europe on the transfer and transition of children with congenital heart disease (CHD). A survey among pediatric…

Are we training our fellows adequately in delivering bad news to patients? A survey of hematology/oncology program directors

BACKGROUND: Medical oncologists often must deliver bad news. The authors were interested in the extent of formal training in delivering bad news in hematology/oncology fellowships in the United States. METHODS: An e-mail survey was sent to all…

Comparing research priorities for pediatric oncology from two panels of experts

2005

Tags: 2005, Attitude Of Health Personnel, Backlog, Child, Congresses, Hare ML, Health Priorities, Health Services Needs And Demand, Humans, Journal Article, National Institutes of Health (U.S.)/organization & administration, Nursing Research/organization & administration, Oncologic Nursing, Pediatric Nursing, Professional Staff Committees/organization & administration, Research Support, Seminars In Oncology Nursing, United States

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…

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