June 2020 List
Title
June 2020 List
Collection Items
A Methodologic Approach to Conducting a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources
CONTEXT: Prior studies have indicated that pediatric palliative care (PPC) resources vary across states and within regions in a state. Evaluating the current status of PPC and pediatric hospice care through a community needs assessment (CNA) can help…
Welcoming expertise: Bereaved parents' perceptions of the parent-healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit
BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new…
Trauma to Transformation: the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore
Background: In 2016, over 6.6 million children died globally, and 245 children died in Singapore. Chronic illnesses are prevalent causes of child mortality around the world. Despite growing research that examines the lived experience of parents…
Changes in Clinical Course Before and After Do-Not-Resuscitate Order Placement in a Pediatric Intensive Care Unit Setting
Background: The relationship between clinical course and do-not-resuscitate (DNR) status has not been well studied in the pediatric intensive care unit (PICU) setting. Objective(s): To describe the relationship between DNR order placement and…
Exploring Compassion from the Perspective of Health Care Professionals Working in Palliative Care
Background: Despite the body of literature regarding the varying definition of compassion, there appears a lack of literature pertaining to the meaning of compassion from the perspective of health care professionals working in palliative care…
Preparing Nurses for Palliative Care in the NICU
Background: Neonatal intensive care unit (NICU) nurses require knowledge and skill to meet the unique needs of infants and families. Increasingly, principles of palliative care are being integrated into the NICU setting to improve the quality of…
Advances and Challenges in European Paediatric Palliative Care
Advances in both public health and medical interventions have resulted in a reduction in childhood mortality worldwide over the last few decades; however, children still have life-threatening conditions that require palliative care. Children's…
A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life
Background: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges…
Ethical Dilemmas at the Beginning and End of Life: A Needs-Based, Experience-Informed, Small-Group, Case-Based Curriculum for Pediatric Residents
Introduction: Pediatric residents are faced with ethical dilemmas in beginning- and end-of-life situations throughout their training. These situations are innately challenging, yet despite recommendations that residents receive training in ethics and…
Palliative care in the neonatal intensive care unit
With increasing facilities for antenatal diagnosis, lowering gestation for intiation of intensive care, palliative care in the perinatal period is increasingly recognized as a specialist area. There have been standards and pathways developed in the…
Strengths, Gaps, and Opportunities: Results of a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources
CONTEXT: Pediatric palliative care (PPC) can improve quality of life for children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, PPC resources and personnel are often inequitably…
Health Care Professionals' Awareness of a Child's Impending Death
Health care professionals' (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and…
Consulting with a folk deity before making decisions: spiritual practices in parents facing end-of-life decisions for their child on life support with brain stem dysfunction
Background: Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child's death, the spiritual practices of parents…
Pediatric Concurrent Hospice Care: A Scoping Review and Directions for Future Nursing Research
In 2010, forgoing curative therapies were removed as a hospice eligibility criterion for children through section 2302 of the Patient Protection and Affordable Care Act called Concurrent Care for Children. Given that concurrent care is a federally…
Decision aids available for parents making end-of-life or palliative care decisions for children: A scoping review
Aim: To identify and assess the quality of decision aids that align the decision, values and information provided for parents making end-of-life or palliative care decisions for children with life-threatening conditions. Method(s): Six databases and…
Parental experiences in end-of-life decision-making in allogeneic pediatric stem cell transplantation: "Have I been a good parent?"
Background: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This…
Pediatric Palliative Transport in Critically Ill Children: A Single Center's Experience and Parents' Perspectives
The transfer of critically ill children from intensive care units (ICUs) to their homes for palliation is seldom described. We report our 10-year pediatric palliative transport experience and conducted a survey to gain parents' perspectives of their…
Parents' experiences of feeding, swallowing, and nutrition in children receiving palliative care
Purpose: Parents caring for children receiving palliative care due to life-threatening illnesses face tremendous stressors, including providing nutrition to their child. Very little is known about this experience or how parents manage nutritional…
Early for Everyone: Reconceptualizing Palliative Care in the Neonatal Intensive Care Unit
Background: Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of…
Bibliotherapy and Bereavement: Harnessing the Power of Reading to Enhance Family Coping in Pediatric Palliative Care
Bibliotherapy is a therapeutic intervention that could potentially be utilized by pediatric palliative care social workers to aid in providing individualized support and adaptive coping techniques through end-of-life and bereavement. Multiple…
Nurses' Perceptions of the Palliative Care Needs of Neonates With Multiple Congenital Anomalies
This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the…
Considering medical assistance in dying for minors: the complexities of children's voices
Medical assistance in dying (MAID) legislation in Canada followed much deliberation after the Supreme Court of Canada's ruling in Carter v. Canada Included in this deliberation was the Special Joint Committee on Physician Assisted Dying's…
Creating evidence: Findings from a grounded theory of memory-making in neonatal bereavement care in Australia
PURPOSE: Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement…
Applying Palliative Care Principles to Communicate With Children About COVID-19
Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children…
Specialized Pediatric Palliative Care in Neonates with Life-Limiting Illness: A Systematic Review
OBJECTIVE: The aim of this study is to assess the impact of specialized pediatric palliative care (PPC) on neonates with life-limiting conditions compared to standard care. STUDY DESIGN: MEDLINE, PsycINFO, Cochrane Central Register of Controlled…