April 2020 List
Title
April 2020 List
Collection Items
Pediatricians' Perceptions Toward Do Not Resuscitate: A Survey in Saudi Arabia and Literature Review
Objective: To explore the pediatricians' attitudes and perceptions toward do-not-resuscitate (DNR) orders in a specific region of the world not fully explored before. Methods: A cross-sectional study was conducted between March 4 and May 30, 2018.…
Palliative care in an underserved community: Striving and thriving
Program Goals: Our program is uniquely positioned in a safety net hospital that serves as a large tertiary referral center for pediatric transplant, trauma and heart failure as well as being an international catchment area for the southern…
Paediatric long-term home ventilation: Should we rethink social inclusion for these children?
Background: over the last 30 yrs, many studies have investigated long-term ventilatory support (LTVS), focusing primary on medical issues. Few researches have focused on social burden for families with a child in need of LTVS. Objectives: aim of the…
Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS)
BACKGROUND: While the populations of children who can benefit from paediatric palliative care (PPC) have been broadly defined, identifying individual patients to receive PPC has been problematic in practice. The Paediatric Palliative Screening scale…
Palliative care in 9 children with neurodegeneration with brain iron accumulation
Aim: Evaluation of pediatric palliative home care of families with children suffering from neurodegeneration with brain iron accumulation (NBIA) and their parents. Material and methods: The children were treated at home by a multidisciplinary team.…
Use of oral cannabis extracts in the pediatric palliative care setting: A retrospective chart review
Attachment to God as a Mediator of the Relationship Between Religious Affiliation and Adjustment to Child Loss
Objectives: The loss of a child is a traumatic life event. While bereavement research has examined the roles of both interpersonal attachment and religiosity in coping with loss, only a handful of studies have addressed the concept of attachment to…
Family attitudes toward genomic sequencing in children with cardiac disease
Purpose of study Care for children with cardiac disease often involves difficult decisions and clinical uncertainty. Genomic Sequencing (GS) promises to improve clinical prognostics and could impact how difficult decisions are made. We sought to…
Healthcare professionals' experiences of perinatal loss: A systematic review
Healthcare professionals' psychological involvement in perinatal loss is a largely overlooked subject by healthcare systems, scientific research and prevention policies. A systematic scientific review has been carried out about emotional experiences,…
Home-Based Pediatric Palliative Care and Electronic Health: Systematic Mixed Methods Review
Background Children and families in pediatric palliative care depend on close contact with health care personnel, and electronic health (eHealth) is suggested to support care at home by facilitating their remote interactions. Objective This study…
GPs' role in caring for children and young people with life-limiting conditions: a retrospective cohort study
Background GPs are rarely actively involved in healthcare provision for children and young people (CYP) with life-limiting conditions (LLCs). This raises problems when these children develop minor illness or require management of other chronic…
Play in Children With Life-Threatening and Life-Limiting Conditions: A Scoping Review
IMPORTANCE: Play is essential to children and provides opportunities to promote their health and well-being. Children living with life-threatening and life-limiting conditions experience deprivation in play. OBJECTIVE: To conduct a scoping review of…
Compassion fatigue, burnout, and compassion satisfaction in pediatric palliative care (PC) providers in the U.S
Purpose: Compassion fatigue (CF) is emotional distress experienced by providers from ongoing contact with patients' suffering. Burnout (BO) is personal distress due to uncontrollable workplace factors that manifest in career dissatisfaction. CF and…
Healthcare utilization among children and young people with life-limiting conditions: Exploring palliative care needs using National Health Insurance claims data
Paediatric palliative care (PPC) is regarded as standard care for children and young people (CYP) with life-limiting conditions (LLCs). There is a lack of knowledge about the rate of CYP with LLCs, hampering the development of PPC. This retrospective…
How The Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative
Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper…
Parent Perspectives During Hospital Readmissions for Children With Medical Complexity: A Qualitative Study
OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent…
Improving the frequency of symptom assessment in pediatric palliative care patients
High quality symptom management for children receiving palliative care relies on accurate and timely documentation of symptoms. Our pediatric palliative and comfort care team (PACT) previously established a mechanism in to assess and document…
“Give them the door but don’t push them through it”: Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine
Little is known about pediatric caregivers’ perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S…
Using web-based training to optimize pediatric palliative care knowledge transfer
Nurses play a central role in delivering palliative care, given their influence on the quality of care provided (Montgomery, Sawin, & Hendricks-Ferguson, 2016). They are professionals of choice when it comes to assessing disease symptoms or…
Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study
BACKGROUND: Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their…
Introduction of triggers for palliative care consultation improve utilization and and satisfaction within a level 4 NICU
The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those…
Toward an Understanding of Advance Care Planning in Children With Medical Complexity
BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP)…
Caregiver-reported impact on quality of life and disease burden in patients diagnosed with metachromatic leukodystrophy: Results of an online survey and a qualitative interview
Metachromatic leukodystrophy (MLD) is a rare autosomal recessive lysosomal disorder caused by a deficiency of the enzyme arylsulfatase A (ARSA). Symptoms include motor decline, developmental regression, decreased intellectual capabilities, and…
Evaluation of Comfort and Confidence of Neonatal Clinicians in Providing Palliative Care
BACKGROUND: Research found that low levels of professional confidence and personal comfort among neonatal clinicians regarding palliative care may indicate a lack of competence and hesitancy to offer neonatal palliative care services. PURPOSE: This…
Factors associated with place of death for children in South Yorkshire: a retrospective cohort study
OBJECTIVES: Place of death (POD) is considered a key quality indicator for adult end of-life care, but paediatric evidence is limited. Data from Child Death Overview Panel (CDOP) databases provides an opportunity to describe trends in POD as regional…
End-of-life care in the pediatric intensive care unit: Survey in Japan
BACKGROUND: End-of-life (EOL) care is an important topic in critical care medicine, but EOL discussions with families can be difficult and stressful for intensivists. The aim of this study was to clarify the current practices and barriers facing…
Initiating end-of-life decisions with parents of infants receiving neonatal intensive care
OBJECTIVE: To investigate whether parent-initiated or doctor-initiated decisions about limiting life-sustaining treatment (LST) in neonatal care has consequences for how possible courses of action are presented. METHOD: Formal conversations (n = 27)…
A Prospective, Crossover Survey Study of Child- and Proxy-Reported Quality of Life According to Spinal Muscular Atrophy Type and Medical Interventions
BACKGROUND: Spinal muscular atrophy is an autosomal-recessive, progressive neuromuscular disease associated with extensive morbidity. Children with spinal muscular atrophy have potentially increased life spans due to improved nutrition, respiratory…