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Background: Children with CHD are at risk for neurodevelopmental delays, and length of hospitalisation is a predictor of poorer long-term outcomes. Multiple aspects of hospitalisation impact neurodevelopment, including sleep interruptions, limited holding, and reduced developmental stimulation. We aimed to address modifiable factors by creating and implementing an interdisciplinary inpatient neurodevelopmental care programme in our Heart Institute.
Methods: In this quality improvement study, we developed an empirically supported approach to neurodevelopmental care across the continuum of hospitalisation for patients with CHD using three plan-do-study-act cycles. With input from multi-level stakeholders including parents/caregivers, we co-designed interventions that comprised the Cardiac Inpatient Neurodevelopmental Care Optimization (CINCO) programme. These included medical/nursing orders for developmental care practices, developmental kits for patients, bedside developmental plans, caregiver education and support, developmental care rounds, and a specialised volunteer programme. We obtained data from the electronic health record for patients aged 0-2 years admitted for at least 7 days to track implementation.
Results: There were 619 admissions in 18 months. Utilisation of CINCO interventions increased over time, particularly for the medical/nursing orders and caregiver handouts. The volunteer programme launch was delayed but grew rapidly and within six months, provided over 500 hours of developmental interaction with patients.
Conclusions: We created and implemented a low-cost programme that systematised and expanded upon existing neurodevelopmental care practices in the cardiac inpatient units. Feasibility was demonstrated through increasing implementation rates over time. Key takeaways include the importance of multi-level stakeholder buy-in and embedding processes in existing clinical workflows.
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http://dx.doi.org/10.1017/S1047951123000562 | DOI Listing |
J Health Serv Res Policy
September 2025
Department of Health and Society, University of Toronto Scarborough, Toronto, ON, Canada.
ObjectivesTo (1) understand the challenges and benefits of providing pregnancy care to people with disabilities and (2) identify strategies to address challenges, from the perspectives of health care and social service providers and decision-makers.MethodsWe undertook a qualitative descriptive study in Ontario, Canada, of 31 health care and social service providers and decision-makers. Participants completed semi-structured interviews about their education, training, and clinical or administrative experience working with pregnant and/or parenting people with physical, sensory, and intellectual or developmental disabilities, including challenges and benefits in pregnancy care provision, programming, and policies, as well as their recommendations to improve care.
View Article and Find Full Text PDFJMIR Pediatr Parent
September 2025
Center for the Promotion of Interdisciplinary Research in Medicine and Life Science, Keio University School of Medicine, Mori JP Tower F7, 1-3-1, Azabudai, Minato-ku, Tokyo, 160-0041, Japan, 81 353633219.
Background: Children and adolescents with attention-deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) often face structural and psychological barriers in accessing medical care, including economic costs, long wait times, and stress of attending new medical environments. The COVID-19 pandemic accelerated the adoption of telehealth services to overcome these challenges. However, few studies have assessed the satisfaction levels of children and adolescents diagnosed with neurodevelopmental disorders and their caregivers when they use telepsychiatry, particularly in Japan.
View Article and Find Full Text PDFAlcohol Clin Exp Res (Hoboken)
September 2025
Uniformed Services University of the Health Sciences, Bethesda, Maryland, USA.
Background: Fetal alcohol spectrum disorder (FASD) is a lifelong neurodevelopmental condition resulting from prenatal alcohol exposure (PAE) during gestation. Conservative estimates of FASD prevalence in United States children are 1%-5%. Early identification could facilitate early intervention, yet fewer than 1% of children with FASD receive a diagnosis.
View Article and Find Full Text PDFJ Affect Disord
September 2025
Institute for Development, Research, Advocacy, and Applied Care (IDRAAC), Beirut, Lebanon; Department of Psychiatry and Clinical Psychology, Saint George University of Beirut Faculty of Medicine, Beirut, Lebanon; Department of Psychiatry and Clinical Psychology, Saint George Hospital University Medi
Background: Temperament has been increasingly studied in relation to neurodevelopmental disorders, including Attention-Deficit/Hyperactivity Disorder (ADHD). This study examines the association between ADHD and affective temperament traits using the Temperament Scale of Memphis, Pisa, Paris, and San Diego (TEMPS-A) in a clinical outpatient sample in Beirut, Lebanon.
Methods: This cross-sectional study included 2564 psychiatric outpatients aged 15 or older who completed the TEMPS-A.
BMJ Open
September 2025
NIHR MindTech Medtech Co-operative, Institute of Mental Health, University of Nottingham, Nottingham, UK.
Objectives: Chronic tic disorders (CTDs)-such as Tourette Syndrome (TS)-are neurodevelopmental disorders affecting at least 1% of the population, causing repetitive involuntary movements and vocalisations known as tics. This study aimed to explore the lived experiences of accessing healthcare for people with CTD or TS and their families in the United Kingdom (UK), as part of a larger programme of work to inform change to healthcare services for this population.
Design: Informed and designed with extensive patient and public involvement, the design utilised qualitative research using focus groups.