July 2023 List
Title
July 2023 List
Collection Items
Neonatal intensive care unit nurses knowledge and attitude toward neonatal palliative care: review of the literature
AIM: To review studies regarding neonatal nurses' knowledge and attitude toward neonatal palliative care (NPC). METHOD: The researchers searched internet sources such as Google Scholar for NPC, Nurses, Knowledge, Attitude, and Educational…
Challenges and opportunities in providing palliative care services to children with a life-limiting illness: A systematic review
Background Palliative care for children is an innovative approach that helps improve the quality of life of children suffering from life-limiting illnesses, and their family members. The WHO recognized palliative care as a part of universal health…
Paediatric palliative care for the generalist
Palliative care has been defined as 'the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life'. Unfortunately, palliative care and especially…
"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care
Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT…
Exploring the Use of Arts-Based Interventions and Research Methods in Families of Seriously Ill Children: A Scoping Review
Family care is essential to pediatric nursing practice, as the entire family is affected by childhood illness. However, little is known about art making for therapeutic purposes and how art is used to better understand families' experiences. Our…
Paediatric palliative care in the NICU: A new era of integration
We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the…
Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement
BACKGROUND: Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was…
Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members
BACKGROUND: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects…
Maternal-fetal surgery as part of pediatric palliative care
Maternal-fetal surgical interventions have become a more common part of prenatal care. This third option, beside termination or post-natal interventions, complicates prenatal decision-making: while interventions may be lifesaving, survivors may face…
Associations between Music Therapy, Pain and Heart Rate for Children Receiving Palliative Care
Abstract Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established.…
Characteristics of Critically Ill Infants at the End of Life in the Neonatal Intensive Care Unit
Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns…
Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases
Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's…
Pediatric Palliative Care at Home: A Prospective Study on Subcutaneous Drug Administration
CONTEXT: The subcutaneous route is a useful alternative for drug administration in palliative care. Although there is scientific evidence on its use in adult patients, the literature in pediatric palliative care is almost nonexistent. OBJECTIVES: To…
Patient-centred outcome measure design: the perspectives and preferences of children and young people with life-limiting or life-threatening conditions
Background: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) face specific challenges when self-reporting health outcomes, including communication difficulties and sensitivities around subject matter. No ideal…
Early Integration of Pediatric Palliative Care in Pediatric Hematopoietic Stem Cell Transplant Patients
Topic significance and study purpose/background/rationale: Patients undergoing hematopoietic stem cell transplant (HSCT) are at risk for significant morbidity and mortality and experience distressing psychological and physical symptoms. Access to…
Religious and cultural challenges in paediatrics palliative care: A review of literature
Introduction: Paediatric palliative care aims to improve the quality of life of both the patients and their families when facing life-threatening illnesses. However, regions with strong religious and cultural practices made caring for ill children…
Ethical Dilemmas in Neonatal Care at the Limit of Viability
Advances in neonatal care have pushed the limit of viability to incrementally lower gestations over the last decades. However, surviving extremely premature neonates are prone to long-term neurodevelopmental handicaps. This makes ethics a crucial…
Impact of Palliative Care Integration on End-of-Life Outcomes in Pediatric Hematopoietic Cell Transplant
Introduction: Pediatric hematopoietic cell transplant (HCT) confers a high risk of morbidity and mortality and palliative care (PC) integration in HCT may improve outcomes. PC services can aid in advanced care planning, symptom management, and…
Integration of Palliative Care in Hematopoietic Cell Transplant: Pediatric Patient and Parent Needs and Attitudes
Context Early integration of palliative care (PC) in hematopoietic cell transplantation (HCT) has demonstrated benefits, yet barriers remain, including perceived lack of patient/caregiver receptivity despite no data on attitudes toward PC and limited…
Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns
BACKGROUND: A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of…
Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit
OBJECTIVE: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). STUDY DESIGN: Single-center, cross-sectional mixed-methods survey study of…
Evaluating the cost-effectiveness of pediatric concurrent versus standard hospice care
Using a sample of 18,152 pediatric hospice patients, this study assessed the cost-effectiveness of concurrent care over standard hospice care. Analysis of incremental cost-effectiveness ratios with bootstrapping simulations showed that concurrent…
Challenges and perspectives of palliative medicine: A webinar by the Paediatric Virology Study Group
Palliative medicine focuses on the quality of life of patients with incurable conditions, who require the adequate relief of physical symptoms, adequate information to make decisions and spiritual wellbeing. Generalist palliative care is provided by…
Specialized pediatric palliative care services in pediatric hematopoietic stem cell transplant centers
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study…
Ethics at the end of life in the newborn intensive care unit: Conversations and decisions
The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue…
Siblings and End-Of-Life Decision Making in the NICU
Background: When making end-of-life decisions for a child in the neonatal intensive care unit (NICU), standard practice is to involve parents in shared decision-making so that the values of parents are considered and decisions are made in the…
The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team
The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric…
End-of-life care in Brazilian pediatric intensive care units: challenges and opportunities
Pediatric Critical Care Medicine has evolved drastically as a specialty since its inception more than five decades ago.1 Advances in technology and medical interventions have led to a substantial reduction in mortality rates, which are now in the…
Addressing 10 Myths About Pediatric Palliative Care
With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical…
[Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale]
INTRODUCTION: The Pediatric Palliative Screening Scale (PaPaS Scale) was designed to help professionals to identify life-limiting or life-threatening children/young people with complex chronic conditions who would benefit from pediatric palliative…
Application of Instrumental Variable Analysis in Pediatric End-of-Life Research: A Case Study
Instrumental variable analysis (IVA) has been widely used in many fields, including health care, to determine the comparative effectiveness of a treatment, intervention, or policy. However, its application in pediatric end-of-life care research has…
You have a little human being kicking inside you and an unbearable pain of knowing there will be a void at the end': A meta-ethnography exploring the experience of parents whose baby is diagnosed antenatally with a life limiting or life-threatening condition
BACKGROUND: Parents of babies diagnosed with life limiting conditions in the perinatal period face numerous challenges. Considerations include the remainder of the pregnancy, delivery of the baby and decisions around care in the neonatal period. AIM:…
Competencies for Psychology Practice in Pediatric Palliative Care
OBJECTIVE: Pediatric psychologists have unique expertise to contribute to the care of youth with serious illnesses yet are not routinely integrated into pediatric palliative care (PPC) teams. To better define the role and unique skillset of…
Navigating two 'truths': a qualitative study of physician-led end-of-life decision-making for children with life-limiting conditions
OBJECTIVE: To describe how paediatricians undertake the process of end-of-life decision-making for a child with a life-limiting condition who is unable to participate in decision-making for themselves. DESIGN: A qualitative phenomenological study…
Experiences of healthcare personnel with death in the neonatal intensive care unit: a systematic review of qualitative studies
OBJECTIVE: To synthesise evidence from qualitative studies on the experiences of healthcare personnel (HCP) in the neonatal intensive care unit (NICU) caring for dying neonates. METHODS: We conducted a systematic search, in accordance with Preferred…