April 2023 List
Title
April 2023 List
Collection Items
Health Professionals' Views on Pediatric Palliative Care: A Mixed Methods Systematic Review
Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric…
Social Workers in Pediatric Intensive Care Units: A Physician Perspective
Objective: The role of social workers, who are beginning to be integrated into the entire health system, is now becoming more and more understood. In our study, we aimed to discuss the duties of social workers at PICU, the results of their work in…
Measuring Pediatric Palliative Care Quality: Challenges and Opportunities
Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their…
Patterns of Pediatric Palliative and End-Of-Life Care in Neonatal Intensive Care Patients in the Southern U.S
OBJECTIVE: Describe pediatric palliative care (PPC) patterns and treatment intensity during the last 48 hours of life among neonatal intensive care unit (NICU) patients in the Southern U.S. who received specialized PPC. DESIGN: Retrospective cohort…
The Process and Impact of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in AYAs and Parents of Children with Serious Illness (TH114C)
Outcomes: 1. Describe the evidence-based benefits of serious illness conversations 2. Describe outcomes from a structured, multicomponent advance care planning communication intervention, the Pediatric Serious Illness Communication Program Background…
Disputes over Diagnosing Death: Is It Ethical to Test for Death by Neurologic Criteria over Parental Objection?
The article focuses on unpredictable patients diagnosis with death by neurological criteria (DNC) and mentions harm caused by overriding parent's denial in case of Maddie Reece who died of drowning. Topics discussed include team helped to understand…
What Does 'Good' Palliative Care Look Like for Children and Young People? A Qualitative Study of Parents' Experiences and Perspectives
BACKGROUND: Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and…
Paying Family Medical Caregivers for Children's Home Healthcare in Colorado: A Working Medicaid Model
OBJECTIVE: To compare the characteristics and healthcare utilization of children with medical complexity (CMC) who receive paid certified nursing assistant (CNA) care by a family member (family CNA) and by a traditional non-family member (non-family…
Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease
Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC…
Please Look at My Baby - When Clinicians Should Say the Word "Hospice"
For the first time since he was born, we looked at our son as a baby who had withstood endless medical interventions. Rather than taking each new diagnosis in stride, we stopped to reflect. [...]
Ethical Considerations in Critically Ill Neonatal and Pediatric Patients
Summary The care of critically ill neonates and pediatric patients can be particularly emotionally and ethically challenging. Emerging evidence suggests that we can improve the patient, family, and care team experience in the critical care setting…
Years of Life Lost: A Call to Achieve Equitable End-Of-Life Care among Children
Significant disparities continue to exist in access to inpatient pediatric hospice care among children at the end-of-life. Increasingly more children at this stage are dying in the hospital or at home on hospice which is not always an acceptable…
A Grounded Theory Study on the Dynamics of Parental Grief during the Children's End of Life
AIM: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life.…
Shades of Care: Understanding the Needs of Racially and Ethnically Diverse Paediatric Patients, their Families, and Health Care Providers in North America
While race and ethnicity have been acknowledged as determinants of health, there remain gaps regarding their effects on experiences of paediatric care. This scoping review examines empirical literature regarding the state and experience of paediatric…
From Hospital to Home: Referrals to Pediatric Hospice and Home-Based Palliative Care
CONTEXT: Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices. OBJECTIVES: To…
Living With Loss: Study Protocol for a Randomized Controlled Trial Evaluating an Internet-Based Perinatal Bereavement Program for Parents Following Stillbirth and Neonatal Death
Background: Stillbirth and neonatal death are devastating pregnancy outcomes with long-lasting psychosocial consequences for parents and families, and wide-ranging economic impacts on health systems and society. It is essential that parents and…
Uncertainty and Perinatal Post?Traumatic Stress Disorder in the Neonatal Intensive Care Unit
Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post?traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of…
Windmills and Pediatric Palliative Care
A Review of Pediatric Care: A Model for Exemplory Practice This book i sbased on research across three settings where children with complex, chronic, and potentially life-threatening conditions are often cared for: neonatal intensive care, oncology…
Grief Journey: Perception and Response Based on Cultural Beliefs in Thai Women Experiencing Perinatal Death
Studying perinatal death needs to involve cultural beliefs influencing women's perceptions and responses to illuminate their grief journey following the loss of their baby. There is an urgent need to provide a deep understanding in this area that…
It Was a Shared Duty': Bereaved Fathers' Perspectives, Experiences and Practices in Relation to their Partner's Lactation after Infant Death
This exploratory study targets a significant gap in the lactation and bereavement literature by exploring bereaved fathers' experiences, perspectives and practices in relation to their partner's lactation after stillbirth, neonatal or infant death.…
George's Lullaby: A Case Study of the Use of Music Therapy to Support Parents and Their Infant on a Palliative Pathway
Having an infant diagnosed with a life-limiting condition is a stressful time for parents and has been shown to have an impact on parental mental health. Music Therapy, when provided by an HCPC registered Music Therapist with enhanced Neonatal…
Education and Mentoring of Specialist Pediatric Palliative Care Medical and Nursing Trainees: The Quality of Care Collaborative Australia
BACKGROUND: The Quality of Care Collaborative Australia (QuoCCA) builds capability in the generalist and specialist paediatric palliative care (PPC) workforce throughout Australia. It supports regional and community services to provide care close to…
"More Life and More Days"-Patient and Care Characteristics in a Specialized Acute Pediatric Palliative Care Inpatient Unit
Only a few acute hospital inpatient units dedicated to pediatric palliative care (PPC) patients exist today. Clinical data on the patients and care provided at specialized acute PPC inpatient units (PPCUs) are scarce. This study aims at describing…
"A Good Death": Role of Shared Decision Making and Palliative Care in Children with Cardiac Disease
We read with interest the article titled “A “Good Death” for Children with Cardiac Disease” by Moynihan et al. [1] The authors found that parents were less likely to perceive a “good death” when there was a lack of advanced care planning, poor pain…
Relationship Between Palliative Care Consults and Outcomes of Pediatric Surgical Patients During Terminal Admissions
Background: Pediatric patients often undergo surgery during terminal admissions. However, the involvement and timing of palliative care consults in caring for these patients has not been readily described. Objective: To describe the presence and…
Talking about the End of Life, Death and Bereavement with Children's Literature
Abstract The French national centre of palliative and end-of-life care (Centre national des soins palliatifs et de la fin de vie) offers each year an updated selection of nearly 200 children's books for helping adults who accompany children who are…
Creating a "Journey Map" for Children with Severe Neurologic Impairment: A Collaboration Between Private and Academic Pediatric Palliative Care, Nonprofit Organizations, and Parents. (FR201B)
Outcomes: 1. Describe how design thinking methodology can be applied to palliative care problems to create novel solutions and products for patients and families 2. Identify the stages of life for a patient with severe neurologic impairment and…
A Seat at the Table: Professional Competencies Define Roles and Value of Psychologists in Pediatric Palliative Care (TH110B)
Outcomes: 1. Describe the development of essential competencies for psychologists in pediatric palliative care (PPC) 2. Discuss psychologists' roles in PPC, research, and education and the value of inclusion as members of the multidisciplinary PPC…
What are virtual wards and how do they work?: primary care nursing roles are being reinvented as virtual ward and hospital at home services evolve
Virtual wards are expanding in many parts of the UK, with the aim of allowing patients to get the care they need at home, rather than in hospital.
Psychedelic-Assisted Therapies and Pediatric Palliative Care: New Tools for Hope and Healing (TH118A)
Outcomes: 1. Upon successful completion, participants will self-report the ability to describe the current state of research around the use of psychedelic-assisted therapies in palliative care 2. Upon successful completion, participants will…
Yesterday a Child, Today a Grown-Up: Reflections on the Patient, Family, and Team Experience of an Abrupt, Non-Linear Transition from Pediatric to Adult Medicine for Young Adults with Serious Illness (FR210A)
Outcomes: 1. Reflect on the experience of young adults and families facing serious illness as they transition from pediatric to adult medicine, including the impact on medical decision making and end-of-life care 2. Describe challenges and strategies…