April 2019 List
Title
April 2019 List
Collection Items
Research Priorities in Pediatric Palliative Care
OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was…
Health-Care Provider Personal Religious Preferences and Their Perspectives on Advance Care Planning With Patients
OBJECTIVE:: To understand how health-care providers' (HCPs) religious preferences influence their willingness to undertake advance care planning (ACP) with patients and their acceptance of other HCP's involvement. METHODS:: Online anonymous survey…
Surviving Siblings' Illnesses, Treatments/Health Services over 13 Months after a Sibling's Death
Two million children experience sibling death annually and have problems that require clinical intervention although few receive such help. Effects on surviving siblings' mental health has been well documented, however their physical health has not.…
Pediatric Perioperative DNR Orders: A Case Series in a Children's Hospital
Context Do-not-resuscitate (DNR) orders are common among children receiving palliative care, who may nevertheless benefit from surgery and other procedures. Although anesthesia, surgery, and pediatric guidelines recommend systematic reconsideration…
Communication about prognosis and end-of-life in pediatric organ failure and transplantation
BACKGROUND: Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end-of-life…
Assessing Ethics Knowledge: Development of a Test of Ethics Knowledge in Neonatology
OBJECTIVE: To develop and validate the Test of Ethics Knowledge in Neonatology (TEK-Neo) with good internal consistency reliability, item performance, and construct validity that reliably assesses interprofessional staff and trainee knowledge of…
Perceptions of discrimination among Mexican American families of seriously ill children
This paper describes Mexican American family members' descriptions of perceived discrimination by pediatric health care providers (HCPs) and the families' reactions to the HCPs' discriminatory conduct. A retrospective, grounded theory design guided…
The usefulness and acceptability of a personal health record to children and young people living with a complex health condition: a realist review of the literature
BACKGROUND: There are a growing number of children and young people (CYP) with chronic health needs or complex disabilities. Increasingly CYP with life-limiting or life-threatening conditions are surviving into adulthood. Communication between CYP,…
Discussing death: Making end of life implicit or explicit in paediatric palliative care consultations
Objective: To consider whether and how family members and clinicians discuss end of life during paediatric palliative care consultations.Methods: Nine naturally occurring paediatric palliative care consultations were video recorded and analysed using…
Advancing the science of outcome measurement in paediatric palliative care
BACKGROUND:: There is a lack of appropriate, validated person-centred outcome measures (PCOM) for paediatric palliative care in the scientific literature, and as a result there is not a tool to drive and evaluate care of children and young people.…
'It's a hard conversation to have'. Healthcare professionals' views concerning advance care discussions with young people affected by life-limiting neuromuscular diseases: an interview study
OBJECTIVE: Life-limiting neuromuscular disease, such as some of the muscular dystrophies, are often diagnosed in early childhood: when death comes, commonly in the second or third decade of life, patients rarely have advance care plans in place or…
Paediatric palliative care: recommendations for treatment of symptoms in the Netherlands
BACKGROUND: Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child…
Who are the children using hospice care?
PURPOSE: The purpose was to examine the characteristics of children who use hospice care. DESIGN AND METHODS: Using the Andersen Model of Health Services Use, California Medicaid administrative databases were analyzed to describe the characteristics…
Individualised advance care planning in children with life-limiting conditions
INTRODUCTION: In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to…
Nurses' Experiences in End-of-Life Care in the PICU: A Qualitative Systematic Review
The experiences of end-of-life care by nurses in the pediatric intensive care unit are the subject of this systematic review. Six qualitative articles from three different countries were chosen for the review using methods from Joanna Briggs…
Can the Ethical Best Practice of Shared Decision-Making lead to Moral Distress?
When healthcare professionals feel constrained from acting in a patient's best interests, moral distress ensues. The resulting negative sequelae of burnout, poor retention rates, and ultimately poor patient care are well recognized across healthcare…
Impact of specialized pediatric palliative care programs on communication and decision-making
OBJECTIVE: To summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions. METHODS: Our search strategy covered MEDLINE, PsycINFO,…
The Prevalence of Nonprescription Cannabinoid-Based Medicines in British Children's Hospices: Results of a National Survey
BACKGROUND: Almost 50,000 children and young people are affected by life-limiting conditions in the United Kingdom, around a third of which use children's hospices. Anecdotal evidence suggests that cannabinoid-based medicines (CBMs), specifically…
Elements of optimal paediatric palliative care for children and young people: An integrative review using a systematic approach
BACKGROUND: Models of palliative care need to address the unmet needs of children, young people and families. OBJECTIVE: To undertake an integrative review to identify the key elements of optimal paediatric palliative care from the perspectives of…
Interventions for noisy breathing in patients near to death
BACKGROUND: Noisy breathing (death rattle) occurs in 23 to 92% of people who are dying. The cause of death rattle remains unproven but is presumed to be due to an accumulation of secretions in the airways. It is therefore managed physically…