Paediatric palliative care is pivotal for addressing the complex needs of children with incurable diseases and their families. While home-based care offers a familiar and supportive environment, delivering comprehensive services in this context is challenging. The existing literature on home-based palliative care lacks detailed guidance for its organization and implementation. This qualitative narrative inquiry explores the organization and provision of home-based paediatric palliative care. Data were collected from healthcare practitioners using conversations, storytelling, and reflective journaling. Schwind's Narrative Reflective Process was applied to synthesize the data, resulting in an in-depth case description. The narrative approach illuminates the complexities of home-based paediatric palliative, end-of-life, and after-death care. Key findings encompass the importance of early-care coordination, interprofessional collaboration, effective symptom management, emotional and psychosocial support, and comprehensive end-of-life planning. Through the case study of the child patient, the challenges and strategies for providing holistic, family-centred care within the home environment are described. Practical insights gained from this report can inform the development and improvement of home-based palliative care programs, benefiting researchers, practitioners, and policymakers seeking to optimize care for children and families in similar contexts.
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http://dx.doi.org/10.3390/children10111777 | DOI Listing |
Pediatr Infect Dis J
December 2024
From the Department of Woman and Child Health and Public Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy.
Introduction: Central nervous system (CNS) infections represent some of the most critical pediatric health challenges, characterized by high mortality rates and a notable risk of long-term complications. Despite their significance, standardized guidelines for endocrinological follow-up of CNS infection survivors are lacking, leading to reliance on the expertise of individual centers and clinicians.
Materials And Methods: Prospective monocentric observational study conducted at the Fondazione Policlinico Universitario Agostino Gemelli in Rome, Italy.
J Palliat Med
January 2025
Section of Geriatrics and Palliative Care, Department of Medicine, Baylor College of Medicine, Houston, Texas, USA.
Cardiogenic shock (CS) is one of the leading causes of death in patients with myocardial infarction, myocarditis, and congestive heart failure. The utilization patterns of specialist palliative care (PC) consultation in these patients are currently unknown. To determine the utilization of PC in patients with CS and the overall comorbidities of that population.
View Article and Find Full Text PDFJ Patient Exp
January 2025
Division of Critical Care, Hospital, and Palliative Medicine, Department of Pediatrics, Columbia University Vagelos College of Physicians and Surgeons and NewYork-Presbyterian Morgan Stanley Children's Hospital, New York, NY, USA.
Patients benefit from and appreciate the option to use telehealth with their providers. Such patient expectations have therefore led to new questions about the factors that affect providers' willingness to adopt telehealth as part of their clinical practice. We interviewed 19 physicians across four specialties with differential rates of telehealth use (Psychiatry, Anesthesiology, Physical Medicine & Rehabilitation [PM&R], and Ophthalmology) to discern the barriers and incentives to telehealth adoption among physicians.
View Article and Find Full Text PDFCardiol Young
January 2025
Department of Pediatrics, Seoul National University Children's Hospital, Seoul National University College of Medicine, Seoul, Korea.
Hybrid procedure of hypoplastic left heart syndrome, comprising ductus arteriosus stenting and bilateral pulmonary artery banding, is a good surgical option for initial palliative procedure for high-risk patients for Norwood procedure. However, ductal stenting may cause retrograde aortic blood flow obstruction. Furthermore, complete removal of stent while performing the Norwood procedure make the operation more difficult.
View Article and Find Full Text PDFAm J Med Genet A
January 2025
Children's Hospital of Philadelphia, Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment, Philadelphia, Pennsylvania, USA.
We report a 28-year-old G2P0 at 24 weeks 5 days who presented for evaluation secondary to suspected skeletal dysplasia in her fetus. Fetal ultrasound imaging demonstrated foreshortened long bones by 9-10 weeks, multiple bowing deformities and fractures, 11 foreshortened paired ribs with fractures, decreased skull mineralization, frontal bossing, enlarged cavum septum pellucidi, and severe fetal growth restriction (< 2%). Findings were concerning for life limiting condition with thoracic circumference < 2.
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