October 2023 List
Title
October 2023 List
Collection Items
End of Life in Pediatrics: The "Relief" of Poetry on Pain by Reaching Children's Spirituality
This article provides a brief overview on the role of poetry into the pediatric palliative and end-of-life care setting. Starting from examples, the author deepens possible applications to the world of children and offers a poem, from his direct…
Navigating a child's best interest: the essential role of palliative care
In June, 2023, BBC One aired Jack Thorne's highly anticipated series Best Interests, the fictional story of Marnie (played by Niamh Moriarty), a teenager with a rare form of muscular dystrophy, whose rapid health deterioration forces her family to…
Including Goals of Care in Treatment Decisions—Meeting Them Where They Are Involves Moving
Asking about the guiding goal of care (GOC) offers health care professionals a perspective on how an individual patient or a family prioritizes health care decisions and is an essential component of shared-decision making. Listening to the patient…
Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks.
Background: Patient experience is a core component of healthcare quality. Patient-reported experience measures (PREMs) are increasingly used to assess this, but there are few paediatric PREMs. This paper reports the first stage of developing two such…
The Butterfly Effect: Supporting Pediatric Trainee Bereavement Through a Condolence Card Project
As medical students and residents, we have all grappled with patient death and dying at some point in our training. These experiences often remain with us, informing our clinical practice, our personal wellbeing, and the ways in which we build…
A One Day Paediatric Palliative Care Study Day Improves Skills
Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated.…
What constitutes 'good quality care' from the perspectives of children and young people with life-limiting and life-threatening conditions?
Objectives Children with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the needs and wishes of…
An Audit Analysing The Standard Of Patient Care And Service Provision In Sppc At A Tertiary Hospital And Hospice
Objectives To identify gaps in SPPC provision at a patient and service level at the tertiary centre, local children's hospice and the region, compared to national frameworks and standards. Specialist paediatric palliative care (SPPC) aims to improve…
Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus…
Use Of Buccal Fentanyl As A Breakthrough Opioid For Symptom Management In Patients Receiving Palliative Care
Objectives Using transmucosal fentanyl as an opioid for rapid acting, needle-free breakthrough relief of symptoms is established within paediatric palliative medicine.1 2 Medication administration via the buccal route is commonly used in paediatric…
Enhanced symptom management clinicparental evaluation. Does it help?
Objectives Questionnaire evaluation of a newly developed Enhanced Symptom Management clinic held at the local children's hospice to support children and young people (CYP) with life limiting (LLC) and life threatening conditions (LTC). Methods A…
Support for families of a child in a palliative situation in the cardiac pediatric intensive care unit
Background and Aim: The birth prevalence of children with congenital heart disease is about one percent a year. This might mean that a palliative diagnosis maybe directly exists from birth due to the complexity of the congenital heart disease. The…
Accessibility and challenges of perinatal palliative care in Poland
Background: This article examines the legal status and level of accessibility to perinatal palliative care (PPC) in Poland, with a focus on the number of services provided and the number of parents receiving PPC services. Material(s) and Method(s):…
Sources of emotional challenge for practitioners delivering family centred care after the death of child: an inductive thematic analysis.
Care after the death of a child and support of their bereaved family is an important element of the services offered by children's hospices in the United Kingdom. The study aims to explore the emotional challenges of those delivering…
Parents' experiences of paediatric palliative care in the community healthcare system: a qualitative study
BACKGROUND: Having a child with a life-limiting illness is a situation that is relatively rare and represents a multidimensional burden on the family. Paediatric palliative care (PPC) aims to maintain the quality of life for the ill child and the…
Diversity of Parent Emotions and Physician Responses During End-of-Life Conversations
BACKGROUND AND OBJECTIVES: To provide support to parents of critically ill children, it is important that physicians adequately respond to parents' emotions. In this study, we investigated emotions expressed by parents, physicians' responses to these…
Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study
Background: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative…
Neonatal serious illness: operational definition
OBJECTIVES: (1) To operationalise our previously published definition of neonatal serious illness by applying it to a patient cohort and (2) to evaluate timing of palliative care consultation, goals of care discussions and meeting serious illness…
"The medicine is the easy part": Pediatric physicians' emotional labor in end-of-life care
Physicians who care for children with life-threatening conditions are uniquely positioned to support families through the dying phase when treatment efforts have failed. Taking on this role for families requires a great deal of time and strategic…
Pediatric Palliative Care: Insights into Assessment Tools andReview Instruments
The proper assessment of needs and outcomes in pediatric palliative care (PPC) is imperativeto ensure the best possible service to patients and families. However, given the multidimensionalnature of PPC, the low number of patients in this setting,…
Metaphors and decision making in parental blogs about their children with life-limiting diseases: who's afraid of the war metaphor?
The use of metaphors aids understanding by allowing us to think of complex problems in terms of relatively simple and more concrete information. As such, metaphors shape thought and guide future action. While metaphors are known to play a role in…
Development and Evaluation of a Child Neurology Resident Curriculum for Communication Around Serious Illness
Background: Communication around serious illness is a core competency for all residencies. One-fifth of neurology residencies have no curriculum. Published curricula use didactics or role-play to assess confidence performing this skill without…
Internet Health Resources on Nocturnal Enuresis - A Readability, Quality and Accuracy Analysis
Introduction Nocturnal enuresis is a common yet quality-of-life-limiting paediatric condition. There is an increasing trend for parents to obtain information on the disease's nature and treatment options via the internet. However, the quality of…
Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation
Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were…
Palliative Communication in the Pediatric Intensive Care Unit
Communication is a central aspect of nursing care and is especially important when pertaining to progressive illnesses and end of life. This article reviews basic palliative care terminology and outlines a variety of communication frameworks from the…
Evaluating a Pediatric Palliative Care Elective Rotation Through Prompted Reflective Writing and Aligning with Competencies
Background: Hospice and palliative medicine is important in the education of pediatric residents. Little is known about if and how residents' learnings during a pediatric palliative care elective fulfill core competencies and Pediatrics…
The Impact of End-of-Life Care Among Nurses Working in the Pediatric Intensive Care Unit
Health care providers caring for patients at the end of life (EOL) are faced with a multitude of emotions such as guilt, anger, sadness, and helplessness. Because of the negative impact of initiating EOL care (EOLC) to the pediatric population,…
A qualitative exploration of parental perspectives on quality of care for children with serious illnesses
Introduction: Being responsive to end-users is essential to good care. Limited in-depth exploration of parental perspectives on care received by children over the course of serious illness has hindered the development of process measures to evaluate…