August 2020 List
Title
August 2020 List
Collection Items
Quality of Life of Children and Adolescents Undergoing Hematopoietic Stem Cell Transplantation Is Negatively Affected by Psychological Distress Experienced by Their Parents: A Case for Pediatric Palliative Care (RP410)
Objectives: * State the elements and trajectory of distress for parents caring for children and adolescents undergoing hematopoietic stem cell transplantation (HSCT) or chimeric antigen receptor (CAR) T-cell therapy. * Examine the impact of parent…
Family Conferences in Prenatal Palliative Care
Background: Fetal malformations are diagnosed prenatally in nearly 3% of pregnancies, and ~1.2% are major malformations. After prenatal diagnosis, it is imperative to consider families' values and to support their decision-making process. Prenatal…
End-of-life care in a pediatric intensive care unit: The impact of the development of a palliative care unit
Background: The purpose of this paper is to describe how end-of-life care is managed when life-support limitation is decided in a Pediatric Intensive Care Unit and to analyze the influence of the further development of the Palliative Care Unit.…
Pediatric Chronic Critical Illness: Training teams to address the communication challenges of patients with repeated and prolonged hospitalizations
CONTEXT: Children with chronic critical illness (CCI) have repeated and prolonged hospitalizations. Discrete communication challenges characterize their inpatient care. OBJECTIVES: Develop, implement and evaluate a communication training for…
Long-term nurse-parent relationships in paediatric palliative care: a narrative literature review
BACKGROUND: Paediatric palliative care (PPC) is an active, total approach to the holistic care of the child and family. Close, long-lasting relationships between healthcare professionals and parents in paediatric palliative care enhance quality,…
Barriers in care for children with life-threatening conditions: a qualitative interview study in the Netherlands
OBJECTIVE: To identify barriers, as perceived by parents, to good care for children with life-threatening conditions. DESIGN: In a nationwide qualitative study, we held in-depth interviews regarding end-of-life care with parents of children (aged 1…
The Long Road to Farewell: The Needs of Families With Dying Children
Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with…
Fifteen-minute consultation: Not the whole story-considering children's spirituality and advance care planning
In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of…
Understanding the Intersection of Pediatric Palliative Care and Child Abuse Pediatrics (GP716)
Objectives: * Describe a framework for understanding circumstances in which Pediatric Palliative Care providers may encounter child abuse or neglect. * Explain the need for future investigations into the overlap of PPC and CPT/CPS. Importance: The…
Palliative and end of life care for a child: understanding parents' coping strategies
AIM: Understanding of coping strategies that parents use before the death of their child is crucial, and will enable us to best provide support. The current study aimed to explore parents' coping strategies, and map these onto an existing theoretical…
The impact of ethical and legal decision-making in neonatal intensive care on psychosocial wellbeing of the health care professionals the overview of the HUNIC Project study design
The paper introduces the multidisciplinary HUNIC project, which is partly based on the EURONIC study. The objective of the HUNIC study is to assess the attitude and opinion of healthcare providers in Hungarian NICUs about end-of-life decisions, the…
Poly-Symptomatology in Pediatric Palliative Care Patients: Baseline Evaluation of SHARE Parent-Reported Data (RP409)
Objectives: * Describe the study design of this study. * Specify the 5 most prevalent symptoms in pediatric palliative care. * Describe how symptom count, frequency, and severity contribute to poly-symptomatology. Importance: Pediatric palliative…
Behavioral Observation of Infants with Life-Threatening or Life-Limiting Illness
BACKGROUND: Infants in the neonatal intensive care unit experience aversive stimuli that cause pain and distress. Maintaining adequate relief from pain and distress is challenging because of infants' varying ages and stages of development and their…
Pediatric Cardiac Critical Care Transport and Palliative Care: A Case Series
OBJECTIVE: To present our center's experience with terminal extubation in 3 palliative critical care home transports from the Pediatric Cardiac Intensive Unit. DESIGN: All cases were identified from our Cardiovascular intensive care unit ( CVICU).…
Extending the Concept of Advance Care Planning to the Perinatal Period
Easier access to prenatal diagnostic procedures led to its widespread use as a screening measure. Hence, today it is more common for life-limiting illnesses to be diagnosed during fetal life. The concept of Advance Care Planning (ACP) provides a…
Patterns of Hospice and Home-Based Palliative Care in Children: An Ohio Pediatric Palliative Care and End-of Life Network Study
Objective: To describe the demographic and clinical characteristics of a cohort of patients referred to pediatric hospice and home-based palliative care (HBPC) programs across Ohio in 2016. Study design: Retrospective cohort study of patients…
Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care
BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing…
Lessons Learned: Identifying Items Felt to Be Critical to Leading a Pediatric Palliative Care Program in the Current Era of Program Development
Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team…
Outpatient liaison palliative care for children: Two Years' Experience of Non-profit Charitable Organization
The system of palliative medical care for children in Russia has been actively developing in recent years. It is important to discuss the principles of outpatient palliative care organization in different regions of the country. The experience of…
Ethics and patient and public involvement with children and young people
Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns,…
Palliative care and paediatric cardiology: current evidence and future directions
Although outcomes for children with heart disease have improved substantially over the past several decades, heart disease remains one of the leading causes of paediatric mortality. For children who progress to advanced heart disease, disease…
Development of an instrument to measure stress in Korean nurses performing end-of-life care for children
PURPOSE: This study aims to develop a scale to assess the stress of nurses caring for terminally ill children and to test the validity and reliability of the scale. BACKGROUND: Nurses caring for children experience various stressors that are…
"We Feel Like We Are in the Dark": A Population Level Qualitative Study of the Training and Support Needs of Hospice Nurses Caring for Children and Families in the Community (RP417)
Objectives: * Describe the evidence from a growing body of literature demonstrating the dearth of pediatric-focused training and resources for community hospice nurses, as well as the lack of comfort of community hospice nurses with providing…
“You have made all the loving choices”: A qualitative study of physician “good parent” statements during Pediatric Intensive Care Unit care conferences
Title “You have made all the loving choices”: A qualitative study of physician “good parent” statements during Pediatric Intensive Care Unit care conferences Background Parents’ ideas about what it means to be a “good parent” to their seriously ill…
Grief among Neonatal Intensive Care Nurses
BACKGROUND: Nurses working in the high-stress environment of the neonatal intensive care unit (NICU) are at high risk of experiencing grief after death of a baby. DESIGN: Using a quantitative cross-sectional design, a convenience sample of nurses…
Human Touch via Touchscreen: Rural nurses' experiential perspectives on telehealth use in pediatric hospice care
CONTEXT: Telemedicine has the potential to extend care reach and access to home-based hospice services for children. Few studies have explored nurse perspectives regarding this communication modality for rural pediatric cohorts. OBJECTIVES: The…
Translating Pediatric Hospital Interpreters' Feedback From Difficult Conversations into Improved Communication
BACKGROUND: Medical interpreters are critical mediators in communication with pediatric subjects and families to include participation in difficult conversations. OBJECTIVE: The objective of this pilot study was to provide suggestions from medical…
Family Caregivers of Children with Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination
OBJECTIVE: To examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL). METHODS: From July 2018 to July 2019, family…