Children with CHD are at risk of neurodevelopmental impairment. Modifiable risk factors associated with hospitalisation that could impact neurodevelopment include being left alone for long periods of time with minimal interaction or opportunity to engage in developmentally appropriate play. Volunteers are an underutilised resource to help the medical team and families support neurodevelopment in cardiac care. Our Cardiac Inpatient Neurodevelopmental Care Optimization or CINCO team aimed to develop a volunteer programme specific to paediatric cardiac inpatient units.

CINCO volunteers were recruited from the hospital volunteer pool and, in 2022, partnered with the University of Colorado to recruit health profession-interested students from under-represented backgrounds. All underwent hospital volunteer orientation and CINCO-specific training with cardiac child life, including education and shadowing. Volunteers completed an activity log and provided qualitative feedback.

Between September 2021 and October 2024, 43 volunteers were onboarded and worked a total of 754 shifts. There were 2310 patient interactions, with an average of 3 patients seen per shift. Volunteers held patients 1231 times, played with patients 1230 times, and read to patients 780 times.

A dedicated cardiac volunteer programme is a feasible, low-cost, and low-risk way to enhance neurodevelopmental care for inpatient children with CHD. When parents or caregivers are not present, volunteers participate as therapy extenders and may offset the care burden for nurses. Furthermore, allowing parents breaks may support their mental health, and increasing neurodevelopmental stimulation through volunteer interactions may mitigate disadvantageous aspects of a hospitalisation for neurodevelopment.

Reports of paediatric cardiac neurodevelopmental programmes are predominately limited to high-volume surgical centres. Regional characterisation of neurodevelopmental care practices across multiple centres both with and without cardiac surgery programmes has not yet been described.

Assess cardiac neurodevelopmental infrastructure and approach across New England to describe regional support for children with CHD.

A 16-item survey assessing inpatient and outpatient neurodevelopmental care practices was sent electronically via REDCap to all member institutions of the New England Congenital Cardiology Association Health Disparities Working Group. Centres were characterised by surgical capability, annual volume, and academic affiliation. Descriptive statistics and Fisher’s exact test were used for comparisons.

The survey response rate was 90% (9/10). Participating centres included non-surgical academic centres (55%), small surgical centres (22%) and medium-large surgical centres (22%). Surgical centres typically refer their patients to internal neurodevelopmental services (100%) and rely on automatic referral processes (100%). Non-surgical centres predominately refer to the institution where cardiac surgery was performed (80%) compared to engaging local teams (20%) and depend on family or physician-initiated referral (100%) to schedule neurodevelopmental services. While none of the non-surgical centres surveyed have cardiac-specific neurodevelopmental programmes, all have other developmental programmes that accommodate children with CHD.

Varying neurodevelopmental infrastructure and resources are reported across New England. Academic, non-surgical centres may have infrastructure for neurodevelopmental follow-up despite not having cardiac neurodevelopmental programmes. Collaboration between surgical and non-surgical cardiac centres in New England may be leveraged to promote neurodevelopmental care closer to home.

In North America, less than 30% of children with complex CHD receive recommended follow-up for neurodevelopmental and psychosocial care. While rates of follow-up care at surgical centres have been described, little is known about similar services outside of surgical centres.

This cohort study used Maine Health Data Organization’s All Payer Claims Data from 2015 to 2019 to identify developmental and psychosocial-related encounters received by children 0–18 years of age with complex CHD. Encounters were classified as developmental, psychological, and neuropsychological testing, mental health assessment interventions, and health and behaviour assessments and interventions. We analysed the association of demographic and clinical characteristics of children and the receipt of any encounter.

Of 799 unique children with complex CHD (57% male, 56% Medicaid, and 64% rural), 185 (23%) had at least one developmental or psychosocial encounter. Only 13 children (1.6%) received such care at a surgical centre. Developmental testing took place at a mix of community clinics/private practices (39%), state-based programmes (31%), and hospital-affiliated clinics (28%) with most encounters billing Medicaid (86%). Health and behavioural assessments occurred exclusively at hospital-affiliated clinics, predominately with Medicaid claims (82%). Encounters for mental health interventions, however, occurred in mostly community clinics/private practices (80%) with the majority of encounters billing commercial insurance (64%).

Children with complex CHD in Maine access developmental and psychosocial services in locations beyond surgical centres. To better support the neurodevelopmental outcomes of their patients, CHD centres should build partnerships with these external providers.

Paediatric patients with heart failure requiring ventricular assist devices are at heightened risk of neurologic injury and psychosocial adjustment challenges, resulting in a need for neurodevelopmental and psychosocial support following device placement. Through a descriptive survey developed in collaboration by the Advanced Cardiac Therapies Improving Outcomes Network and the Cardiac Neurodevelopmental Outcome Collaborative, the present study aimed to characterise current neurodevelopmental and psychosocial care practices for paediatric patients with ventricular assist devices.

Members of both learning networks developed a 25-item electronic survey assessing neurodevelopmental and psychosocial care practices specific to paediatric ventricular assist device patients. The survey was sent to Advanced Cardiac Therapies Improving Outcomes Network site primary investigators and co-primary investigators via email.

Of the 63 eligible sites contacted, responses were received from 24 unique North and South American cardiology centres. Access to neurodevelopmental providers, referral practices, and family neurodevelopmental education varied across sites. Inpatient neurodevelopmental care consults were available at many centres, as were inpatient family support services. Over half of heart centres had outpatient neurodevelopmental testing and individual psychotherapy services available to patients with ventricular assist devices, though few centres had outpatient group psychotherapy (12.5%) or parent support groups (16.7%) available. Barriers to inpatient and outpatient neurodevelopmental care included limited access to neurodevelopmental providers and parent/provider focus on the child’s medical status.

Paediatric patients with ventricular assist devices often have access to neurodevelopmental providers in the inpatient setting, though supports vary by centre. Strengthening family neurodevelopmental education, referral processes, and family-centred psychosocial services may improve current neurodevelopmental/psychosocial care for paediatric ventricular assist device patients.

Neurodevelopmental challenges are the most prevalent comorbidity associated with a diagnosis of critical CHD, and there is a high incidence of gross and fine motor delays noted in early infancy. The frequency of motor delays in hospitalised infants with critical CHD requires close monitoring from developmental therapies (physical therapists, occupational therapists, and speech-language pathologists) to optimise motor development. Currently, minimal literature defines developmental therapists’ role in caring for infants with critical CHD in intensive or acute care hospital units.

This article describes typical infant motor skill development, how the hospital environment and events surrounding early cardiac surgical interventions impact those skills, and how developmental therapists support motor skill acquisition in infants with critical CHD. Recommendations for healthcare professionals and those who provide medical or developmental support in promotion of optimal motor skill development in hospitalised infants with critical CHD are discussed.

Infants with critical CHD requiring neonatal surgical intervention experience interrupted motor skill interactions and developmental trajectories. As part of the interdisciplinary team working in intensive and acute care settings, developmental therapists assess, guide motor intervention, promote optimal motor skill acquisition, and support the infant’s overall development.

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.

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.

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.

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.