August 2023 List
Title
August 2023 List
Collection Items
Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit
Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the…
A qualitative phenomenological study of nurses' experiences in caring for infants and children with life-limiting and life-threatening conditions
Abstract Purpose: To understand the experience of nurses caring for infants and children with life limiting and life-threatening conditions. Design and methods: A qualitative phenomenological study was conducted, collecting data through deep…
Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation
Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation. Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at…
How do children’s nurses working in hospices manage emotional labour and professional integrity in long-term relationships with parents?
Background Children with life-limiting conditions are living longer, so relationships between nurses and families can span decades (Maunder 2013)2. Although long-term relationships between nurses and children/families in paediatric palliative care…
The roles of preparation, location, and palliative care involvement in parent-perceived child suffering at the end of life
Purpose Parents' perceptions of their child's suffering affect their bereavement experience. Identifying factors that shape parental perceptions of suffering could help build effective supportive interventions for children and parents navigating EOL…
Increasing Trend and Effects of Pediatric Palliative Care on Children with Non-Cancer Diagnoses
Objectives Pediatric palliative care (PPC), especially among noncancer pediatric patients, faces challenges including late referral, limited patient care, and insufficient data for Asian patients. Methods This retrospective cohort study used the…
Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope
Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological…
The Pediatric Serious Illness Conversation Program: Understanding challenges and experiences for clinicians after advance care planning training
OBJECTIVES: To explore experiences of pediatric clinicians participating in a serious illness communication program (SICP) for advance care planning (ACP), examining how the SICP supports clinicians to improve their communication and the challenges…
Sharing care at the End of life for adolescent patients with neuro-disability: A case series
Background Adolescents with long term conditions are recognised to have unique needs and to experience particular health risks as they transfer to adult services. Some young people with complex neuro-disability may live years following transfer to…
Goals of Care Among Parents of Children Receiving Palliative Care
Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known.…
"It's a Heavy Thing to Carry:" Internal Medicine and Pediatric Resident Experiences Caring for Dying Patients
BACKGROUND: Residents often feel unprepared to care for dying patients and may benefit from more training. Little is known about factors in the clinical setting that promote resident learning about end of life (EOL) care. OBJECTIVE(S): This…
Fatal fetal anomaly: Experiences of women and their partners
OBJECTIVE: This study explored the care experiences of parents whose pregnancy was diagnosed with a fatal fetal anomaly following the legalisation of termination of pregnancy in 2019 in Ireland., METHODS: A qualitative study using in-depth…
"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions
BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known…
Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions
Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this…
Paediatric end-of-life care at home
BACKGROUND: A terminally ill child should have the possibility to be at home with their family during the end of life. Provision of care from primary care nurses (PCNs) is crucial, but no model exists on how specialised paediatric palliative care…
Barriers to Pediatric Palliative Care: Trainee and Faculty Perspectives Across Two Academic Centers
Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers…
Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part II)
Coping with the death of a newborn infant requires training and reflection regarding the end-of-life decision-making process, communication with the family, and the care to be provided. The objective of this article is to analyze in depth the salient…
Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands
Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make…
Care Provider Behaviors That Shape Parent Identity as a "Good Parent" to Their Seriously Ill Child
Full text linksCite Abstract Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider…
Empathy Expression in Interpreted and Noninterpreted Care Conferences of Seriously Ill Children
BACKGROUND AND OBJECTIVES: Clinician empathy is associated with improved
Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data
Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing…
Children With Complex Chronic Conditions: A Multifaceted Contemporary Medical Challenge Not Restricted to PICUs
Widespread primary care policies coupled with the advent of tertiary and quaternary care facilities promoted an impressive reduction of pediatric mortality in the last 50 years worldwide. The better care provided to survivors led to a significant…
The FATHER Model of Loss and Grief After Child's Life-Limiting Illness
Context: Loss of a child to a life-limiting condition (LLC) is 1 of the most traumatic life events for parents. Research focusing on fathers' experiences is in its infancy. Objectives: Using a meta-ethnographic approach, we systematically reviewed…
Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study
Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. Methods: A qualitative descriptive case study was conducted. Purposeful sampling took…
Pediatric palliative medicine in Brazil: an ethical reflection of medical practice
The ethical barriers involved in the practice of pediatric palliative medicine remain high and challenging. In terms of medical ethics, attention should be paid to culture, religion and family values, in order to promote adequate care for caregivers,…
Incremental cost analysis of pediatric hospice care in rural and urban Appalachia
Purpose: Considering growing disparities in health outcomes between rural and urban areas of Appalachia, this study compared the incremental Medicaid costs of pediatric concurrent care (implemented by the Patient Protection and Affordable Care Act)…
‘Whose Milk Was It, Really? … It Was a Gift, a Savior, a Healer, and a Connector’: Reflections on a Collaborative Autoethnography of Breastmilk Donation after Stillbirth
This is the intertwined story of three unique individuals—each of us parents, researchers, givers and takers—who met and changed each other’s lives, whilst simultaneously struggling to comprehend and make meaning out of our own personal losses. After…
Assessing HeartSong as a Neonatal Music Therapy Intervention: A Qualitative Study on Personal and Professional Caregivers' Perspectives
Abstract Background: The music therapy HeartSong intervention pairs newborn infant heartbeats with parents' Song of Kin. Formal evidence on professional and personal caregiver perspectives of this intervention is lacking. Purpose: This survey study…
Bereaved mothers' experience of expressing and donating breast milk: An interpretative phenomenological study
Abstract Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick…
Redirecting Care: Compassionate Management of the Sick or Preterm Neonate at the End of Life
The primary moral commitment of medical care has traditionally been based on a belief in the intrinsic value and significance of human life and a desire to protect the most vulnerable from harm. In this respect, the care of newborn infants who are at…