Browse Items · Pediatric Palliative Care Library

Adherence to medical recommendations and transition to adult services in pediatric transplant recipients

PURPOSE OF REVIEW: Nonadherence to treatment recommendations, especially when associated with transition to adult care providers, account, by some estimates, for most organ rejections and death in long-term pediatric survivors of solid organ…

Adolescents' reports of parental knowledge of adolescents' use of sexual health services and their reactions to mandated parental notification for prescription contraception

CONTEXT: Legislation has been proposed that would mandate parental notification for adolescents younger than 18 years (minors) obtaining prescription contraception from federally funded family planning clinics. OBJECTIVE: To determine the extent to…

An Online Educational Program Improves Pediatric Oncology Nurses' Knowledge, Attitudes, and Spiritual Care Competence

This study evaluated the potential impact of an online spiritual care educational program on pediatric nurses' attitudes toward and knowledge of spiritual care and their competence to provide spiritual care to children with cancer at the end of life.…

Barriers to conducting advance care discussions for children with life-threatening conditions.

BACKGROUND AND OBJECTIVE: Advance care discussions (ACD) occur infrequently or are initiated late in the course of illness. Although data exist regarding barriers to ACD among the care of adult patients, few pediatric data exist. The goal of this…

Brief report: family-based group intervention for young siblings of children with chronic illness and developmental disability

OBJECTIVE: To evaluate the impact of a family-based group intervention for young siblings of children with chronic illness and developmental disability (CI/DD). METHODS: Forty-three healthy siblings (ages 4-7 years) of children with CI/DD and their…

Confidentiality in health care. A survey of knowledge, perceptions, and attitudes among high school students

OBJECTIVE--To assess adolescent knowledge, perceptions, and attitudes about health care confidentiality. DESIGN--Anonymous self-report survey with 64 items addressing confidentiality issues in health care. SETTING--Rural, suburban, and urban high…

Creating social work competencies for practice in hospice palliative care

Social workers play an important role in the delivery of Hospice Palliative Care in many diverse settings. The profession brings a unique perspective to end-of-life care that reflects and supports the holistic philosophy of Hospice Palliative Care.…

Development and validation of the Communicating with Family about Brain Death Scale

This study reports development of a scale assessing communication with family about brain-dead organ donation. Two cross-sectional studies demonstrated scale validity. Tests of internal, external, and predictive validity were conducted using…

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

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 care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses

OBJECTIVE: To determine the attitudes and practices of pediatric critical care attending physicians and pediatric critical care nurses on end-of-life care. DESIGN: Cross-sectional survey. SETTING: A random sample of clinicians at 31 pediatric…

End-of-life care in the pediatric intensive care unit: research review and recommendations

Improving the quality of end-of-life care has become a national health care priority. A necessary step in this process in the pediatric intensive care unit (ICU) is examining the knowledge, attitudes,and behaviors of pediatric critical care…

Estimates of life expectancy by adolescents and young adults with congenital heart disease

OBJECTIVES: This study sought to determine what adolescents and young adults with moderate to complex congenital heart disease (CHD) believe their life span to be and to examine correlates of their beliefs. BACKGROUND: Patients with moderate to…

Experience of parents receiving results from a quality-of-life study in pediatric advanced cancer: A report from the PediQUEST study

Little is known about the experience of parents receiving results of quality-of-life research in pediatric advanced cancer. The PediQUEST study participants who indicated interest in results during enrollment were mailed summarized findings and the…

Tags: 2019, Bilodeau M, Dissemination, Dussel V, Oncology 2019 List, Pediatric Blood and Cancer, Pediatric Oncology, Practice, Quality Of Life, research results, Wolfe J

Experiencing transitions: an emerging middle-range theory

Changes in health and illness of individuals create a process of transition, and clients in transition tend to be more vulnerable to risks that may in turn affect their health. Uncovering these risks may be enhanced by understanding the transition…

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

Family beliefs regarding the nutritional care of a terminally ill relative: a qualitative study

OBJECTIVE: To develop a conceptual model of family caregiver beliefs and behavior related to nutritional care of the terminally ill by examining the perspectives of family members, patients, and health care providers. DESIGN: Qualitative study using…

Gender-specific factors in the utilization of medical services during adolescence

Although adolescents suffer from a variety of complaints, they do not often consult a doctor. Following a high rate of medical consultation during infancy and childhood, the rate dramatically decreases at the age of 10 and increases again around the…

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'…

In What Circumstances Will A Neonatologist Decide A Patient Is Not A Resuscitation Candidate?

Objective The purpose of this study was to determine the opinions of practising neonatologists regarding the ethical permissibility of unilateral Do Not Attempt Resuscitation (DNAR) decisions in the neonatal intensive care unit.

Study design An…

Learning to Hold a Paradox': A Narrative Review of How Ambiguous Loss and Disenfranchised Grief Affects Children in Care

Separation and loss characterise a child's experience in care, yet losses in the care-experienced population have rarely been studied as a possible source of trauma or as events that may justify a grief response. A literature search of five databases…

Living With Dying In The Pediatric Intensive Care Unit: A Nursing Perspective

BACKGROUND:
Despite reported challenges encountered by nurses who provide palliative care to children, few researchers have examined this phenomenon from the perspective of nurses who care for children with life-threatening illnesses in pediatric…

Moral Distress In The Everyday Life Of An Intensivist

A regular work day for intensivists can be emotionally draining, as we witness suffering, fear, pain,
tragedies, unfair treatment of children, death…. We may experience the mental stress of dealing with
nursing shortages, increasing family demands,…

Tags: 2016, Critical Care Medicine, Daniel Garros, Decision Making, Decision-making, End-of-life Care, Ethics, Frontiers in Pediatrics, Judgment (ethics), Medical, Moral Distress, Pediatric Critical Care Medicine, Pediatric Research, Physicians, Practice, Research, Rj1-57, September 2016 List

Newborn genetic screening for spinal muscular atrophy in the UK: The views of the general population

BACKGROUND: Spinal muscular atrophy (SMA) is an inherited neuromuscular disorder and a leading genetic cause of infant death worldwide. However, there is no routine screening program for SMA in the UK. Lack of treatments and the inability of…

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…

Paediatric fever management: continuing education for clinical nurses

PURPOSE: This study examined the influence of level of practice, additional paediatric education and length of paediatric and current experience on nurses' knowledge of and beliefs about fever and fever management. METHOD: Fifty-one nurses from…

Palliative care of children with brain tumors: a parental perspective

OBJECTIVE: To explore the end-of-life experience of children with brain tumors and their families. DESIGN: Qualitative analysis of focus group interviews. SETTING: Children's Hospital, London Health Sciences Center. PARTICIPANTS: Twenty-five parents…

Palliative care on the net: an online survey of health care professionals

A survey was conducted to explore Internet use by palliative care health professionals (HCP). The survey was placed on the World Wide Web with an underlying database, and palliative care HCP were invited to participate via a palliative-care-related…

Patient End-of-life Experiences For Pediatric Trainees: Spanning The Educational Continuum

Background End-of-life care for a child is an emotionally charged experience for pediatric trainees. Objectives Describe the progression of medical trainee experiences with end-of-life care and determine personal/professional experiences that…

Tags: 2016, Analysis, Bereavement In Children, Clin Pediatr (Phila), Control, Education, Educational Continuum, End-of-life Care, Grieving, July 2016 List, K Senthil, Medical Students, Pediatric Resident Education, Pediatricians, Practice, Terminal Care

Pediatric oncology providers' perceptions of barriers and facilitators to early integration of pediatric palliative care

BACKGROUND: Pediatric patients experience significant symptoms during cancer treatment. Symptom management is frequently inadequate. We studied perceptions of pediatric oncology care providers regarding early integration of palliative care (PC) for…

Perception of Pediatric Oncology Family Care Providers toward Palliative Care and Its Perceived Barriers in Egypt

BACKGROUND: Palliative care is comprehensive supportive care addressing the suffering, pain, discomfort, symptoms, and stress of cancer and any serious life-threatening disease. It is a key part of care for our children living with cancer and is an…

Tags: 2022, 2022 Special Edition Low Resource Setting Issue, Abdella N, Attitude, Barriers, Elmowafy RI, Ibrahim AM, Ibrahim HM, Knowledge, Mohamed MA, Oncology, Palliative & Supportive Care, Palliative Care, Practice

Perspectives of patients with cystic fibrosis on preventive counseling and transition to adult care

The purpose of this study was to investigate how adolescents and adults with cystic fibrosis (CF) view preventive counseling and their transition to adult-centered care within a children's hospital. Thirty-two patients >/=16 years old diagnosed with…

Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects

OBJECTIVES: More than 85% of children born today with chronic medical conditions will live to adulthood, and many should transfer from pediatric to adult health care. The numbers of adults with congenital heart defects (CHDs) are increasing rapidly.…

Provider Perceptions for Withdrawing Life Sustaining Therapies at a Large Pediatric Hospital

Context: More than 74% of pediatric deaths occur in an intensive care unit (ICU), with 40% occurring after withdrawal of life-sustaining therapies (WOLST). No needs assessment has described provider needs or suggestions for improving the WOLST…

Tags: 2022, Analysis, Article, CARE, Carpenter AT, Casas JA, Child, Clinical, Coleman RD, coronary, Crawford CA, data, Drug, erratum, experiment, Female, guideline, Health, Hospital, Human, intensive, Journal of Pain and Symptom Management., Life, Major, Male, Neonatal, Palliative, Pediatric, Perception, Practice, Qualitative, Quality, quantitative, Sawyer K E, September 2022 List, Software, study, sustaining, Therapy, Treatment, Tume SC, Unit, Withdrawal

Social work and end-of-life care: reviewing the past and moving forward

This paper reviews the professional literature with respect to the social work profession's involvement in end-of-life care. The search process was conducted by entering key words in various combinations to electronic databases. Eligible articles…

Tags: 2005, Altruism, Attitudes, Backlog, Brandsen CK, Clinical Competence, Health Knowledge, Health Services Accessibility, Humans, Interdisciplinary Communication, Journal Article, Journal of Social Work in End-of-Life & Palliative Care, Practice, Social Work/education/organization & administration, Terminal Care/organization & Administration

Social work competencies in palliative and end-of-life care

Social workers from clinical, academic, and research settings met in 2002 for a national Social Work Leadership Summit on Palliative and End-of-Life Care. Participants placed the highest priority on the development and broad dissemination of a…

The Cardiovascular Health Education Program: assessing the impact on rural and urban adolescents' health knowledge

In this research study, a quasi-experimental, nonequivalent control group pretest-posttest design was used to assess the impact of the Cardiovascular Health Education Program (CHEP) on the cardiovascular health knowledge of grade eight adolescents. A…

The Delphi technique: a comparison of results obtained using two expert panels

The Delphi technique is a useful method of obtaining group consensus. However, "consensus" is not usually defined when this technique is used. This paper describes a study in which two panels of experts (registered nurses who were nurse managers or…

Tags: 1993, Attitudes, Backlog, Delphi Technique, Duffield C, Health Knowledge, Humans, International Journal Of Nursing Studies, Job Description, Journal Article, New South Wales, Nursing, Nursing Administration Research, Practice, Professional Competence/standards, Supervisory/standards

The experiences of Chinese family members of terminally ill patients - a qualitative study

AIM: To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit. BACKGROUND: Palliative care aims to provide care to dying patients and their family…

The impact of a palliative care team on residents' experiences and comfort levels with pediatric palliative care

BACKGROUND: 8,600 children are eligible for palliative care services each day in the US, yet many pediatric residents and pediatricians do not feel comfortable providing palliative/end of life care. OBJECTIVE: To evaluate the impact of a palliative…

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