The most frequently reported environmental challenge to the delivery of neurodevelopmental services in Australia was geographical. Specifically, the large dispersion of families across the country, often distant from tertiary care settings. This requires families to travel long distances to access specialised care and makes equitable staffing and delivery of follow-up services challenging. Additionally, participants reported that limited health infrastructure and internet connectivity in regional areas created further inequities in service access and availability for these families.

Context specific socioeconomic challenges were also noted in some regions of the country. Prioritisation and delivery of neurodevelopmental follow-up care for children was impacted by complex social determinants of health such as poverty, transportation, food insecurity, weather, domestic violence, access to childcare, care giver substance misuse, and foster care. As one participant described: “I can't get near them with medical problems. I got to go—I've got to get all the social problems out first, you know?”. (P26, Paediatrician, Northern Territory) These environmental and social challenges were most acutely experienced in the Northern Territory. Participants described a local context in which families faced difficulties travelling to access neurodevelopmental follow-up care due to seasonal weather events (monsoonal rains), a lack of wrap around supports (family-friendly accommodation and transport), or culturally insensitive policies (travel, family escorts).

Australia's disability sector and government funded national disability insurance scheme were acknowledged by participants as having a small but significant role in supporting neurodevelopmental follow-up care for children with CHD. For children with qualifying co-morbidities or diagnosed developmental disorders the insurance scheme enabled access to lower-cost, locally based intervention services. However, children with CHD do not automatically qualify for support and challenges persist for parents with misguided expectations of the scheme, understanding and meeting eligibility criteria (including age limits and functional diagnoses), and navigating and accessing approved services. Improving connections between the health and disability sector to increase knowledge about disability support services within and beyond this scheme (e.g., free Early Childhood Approach playgroups) was perceived as a critical enabler of more appropriately integrating this complementary sector into predominantly health-based neurodevelopmental follow-up pathways.

Participants from all disciplines and regions of Australia (n = 40) described the most significant challenge to be access for families to healthcare services to support neurodevelopmental follow-up care in a timely and equitable manner. The key concern was growing demand within a public (government-funded) health system already at capacity and experiencing significant workforce and funding constraints. Consequently, long waiting lists (up to 12–24 months) for both evaluation and intervention were frequently reported by participants from hospital-based and community services. However, as a large proportion of neurodevelopmental follow-up care for children with CHD is done in community, these services were strained. Timely access to developmental paediatricians, allied health providers, psychologists, and child development services were all flagged as challenges by participants. The scope of this problem across multiple regions and healthcare disciplines is highlighted in Table 3.

While access to services was a common challenge nationally, participants noted greater disparities for particular groups of children. Firstly, First Nations communities were perceived to have inequitable access to universal screening, and maternal and child health services, leading to delayed presentation. Secondly, those living in regional or rural areas experienced greater access challenges with a limited number of health services often available, high turnover of clinicians and variable access to specialists.

Affordability of neurodevelopmental evaluation and intervention was highlighted as a lesser challenge. This included both the time and money required for families to attend public sector appointments, as well as the high cost of choosing to access care though private providers. The cost of private services was described to be “hundreds and hundreds, if not upwards of a thousand dollars” [P14, Psychologist, New South Wales]. While paying to see private providers presented a good option for some families, this did not guarantee timely access to care:

A similarly strong theme identified across interviews (n = 32) was the challenge of delivering holistic neurodevelopmental follow-up care in a system which was experienced as being uncoordinated and fragmented. Silos of care were reported within and beyond the health system, driven by a lack of communication, collaboration, data sharing, integration and coordination between different service systems, geographical regions, care providers, clinical disciplines, and sectors (see Table 4 for examples). Given that neurodevelopmental follow-up care for children with CHD sits in a unique space at the intersection of multiple services, disciplines and government sectors, this siloing becomes a major challenge for care delivery and funding.

For example, several participants highlighted the disconnect between the health, education, and disability sectors, including separate funding and service delivery models. Similarly, care was not always perceived to be shared well when transitioning from hospital to community services, and gaps were also noted in the transition from paediatric to adult services. Difficulties navigating complex care systems were perceived as a challenge for both families and healthcare providers. This was compounded by the fact that many providers interviewed were not sure about how developmental care was supported in other states or regions of the country, outside their own. This presented a challenge in supporting families who needed to access care across state borders or in a region different to where their surgical care was provided.

Concerns were raised about the ability of current funding allocation to adequately resource the delivery and sustainment of neurodevelopmental follow-up services across Australia. Participants (n = 27) highlighted the key challenge of meeting the growing demand for these services while facing constrained funding for staff, training, physical space and infrastructure, early intervention services, and multidisciplinary care models [see Supplementary Table 4, A1 for more supporting quotes].

Participants expressed frustration with a perceived misalignment of state and federal funding priorities with the delivery of follow-up care. Namely, that the allocation of health service funding is often skewed towards acute care provided by tertiary centres, which is at odds with the need for long-term, local delivery of neurodevelopmental follow-up care. As a result, community paediatric and allied health services were perceived as considerably underfunded, contributing to staff shortages and long waiting lists [Supplementary Table 4, A2].

Other important challenges include regional inequities in funding and resource allocation, limited resourcing of community supports and non-governmental organizations, the ways service eligibility criteria were influenced by funding, and an unsustainable reliance on philanthropic funding for some service delivery [Supplementary Table 4, A3].

Several participants provided examples where financial support and investment had been a key enabler in improving neurodevelopmental follow-up care. Funding by individual health services to support dedicated roles, program implementation and coordination, innovative models of care, developmental training, and the redesign and extension of services was reported as a key enabler. The federal government's growing research investment in the sector was also recognized as a positive drive towards change.

Participants in every state and territory (n = 27) reported significant barriers related to systemic health workforce shortages, particularly of those providers with the required expertise to deliver neurodevelopmental follow-up to children with CHD. This was most acutely felt in publicly funded community services, with shortages of developmental paediatricians, allied health professionals and nurses common. This challenge was compounded by high staff turnover due to ongoing difficulties in recruiting and retaining staff. Private sector competition, inadequate service funding, limited training opportunities in neurodevelopmental assessment, and variable interest in the field were suggested as potential contributing factors [Supplementary Table 4, B1].

Additionally, there was perceived to be a lack of funding for dedicated roles to support neurodevelopmental follow-up of children with CHD, including nurse coordinators, and administrative assistants. Ultimately, these workforce shortages were reported to have direct impacts on clinic capacity, scope of services provided, and the ability to triage and see families in a timely manner.

Many participants (n = 19) expressed frustrations that despite evidence of its importance, neurodevelopmental care is still not given sufficient priority within local healthcare systems. It was suggested that its long-term value for children is not well understood by hospital executives and funders. Consequently, the lack of leadership buy-in to invest in developmental paediatrics and early childhood services hampers the allocation of resources needed to deliver neurodevelopmental follow-up care for children, including those with CHD [Supplementary Table 4, C1].

While cardiologists were generally perceived as supportive of neurodevelopmental follow-up care, participants felt that medical outcomes were still prioritised over long-term development.

Participants also raised challenges they had experienced when advocating for follow-up programs in a health system focused on acute, hospital-based care which often viewed neurodevelopmental follow-up care for children with CHD as an “optional extra” [Supplementary Table 4, C2–3].

Conversely, the presence of influential individuals or leaders who were committed to supporting and championing neurodevelopmental follow-up, and fostering collaboration among colleagues, was reported to be a key enabler of success. The importance of such engagement across both hospital-based and community settings was highlighted by participants [Supplementary Table 4, C4].

Participants (n = 17) also described how improving local system-level care coordination had positively impacted on their ability to provide neurodevelopmental follow-up. Commonalities included utilizing and integrating technology, implementing efficient systems, coordinating appointments, maintaining continuity of care, and triaging referrals. Streamlining processes, optimizing communication, and minimizing barriers for families better enabled access to comprehensive neurodevelopmental follow-up care. For example, some hospitals reported using care coordinators to gather information and liaise with families to prevent children from falling through the cracks [Supplementary Table 4, D1]. Others used flags on the electronic medical record to trigger a neurodevelopmental assessment for children with CHD at routine paediatric or cardiology follow-up clinics:

“The fact that it's built into electronic records and automated means that hopefully people won't fall through the gaps.” [P36, Cardiologist, Victoria]

Participants (n = 20) described the strong enabling role that positive relationships, effective communication and interprofessional collaboration played in supporting care delivery. At a service provision level this included collaborative relationships between different hospital-based teams as well as with community providers such as allied health clinicians, general practitioners, Aboriginal health services, and child health nurses. In this way, service provision could be complementary and care better transitioned and integrated for families [Supplementary Table 4, E1].

Several participants also highlighted the supportive role that school-based psychologists and guidance counsellors played in their care pathways. Finally, it was perceived that the paediatric development and heart disease communities in Australia are collegial and collaborative, citing buy-in from state-wide clinical networks as a clear enabler.

Despite overarching workforce issues, many health providers (n = 18) did report the existence of funded, well-established, and skilled multidisciplinary teams in their services. The presence of these collaborative teams was a key enabler in providing neurodevelopmental follow-up to children with CHD.

In these teams, each member brought expertise within their respective role, and success was usually attributed to good communication and building trust with each other and families. The provision of local capacity building opportunities in neurodevelopmental assessment/evaluation was highlighted as an important strategy to foster the creation and sustainment of skilled teams. One participant described the outcome of such training in a regional service:

Skilled, hardworking, and generous staff who are passionate about caring for children and improving practice are a positive attribute of current neurodevelopmental follow-up care. Staff members often went above and beyond their regular duties to enhance their knowledge and skills for the benefit of patients. Across the disciplines of cardiology, paediatrics, nursing, and allied health, participants described staff members who invested significant personal time and effort to build and improve developmental screening and assessment services [Supplementary Table 4, F1].

Participants highlighted the enabling role played by recent increases in recognition from cardiologists and paediatricians about the need for ongoing neurodevelopmental follow-up for children with CHD, and benefits of targeted and appropriate interventions.

Comments by other participants however, suggested that development was still not always top of mind for many clinicians, dampening the strength of this enabler [Supplementary Table 4, G1].

Those interviewed also felt many providers still had insufficient knowledge and understanding about when and how to identify neurodevelopmental concerns associated with CHD and provide appropriate referral options. In practice this often resulted in poor quality referrals and gaps in clinical communication.

A recurring theme was the complexity associated with determining clinical responsibility for neurodevelopmental follow-up, with tensions between different public sectors, healthcare providers, and parents. Many attributed this to the complex interplay between acute hospital-based cardiac care, followed by long-term community-based developmental follow-up care, as well as a lack of guidance about the roles and expectations of each health provider group or sector.

Several participants described cardiologists “buck passing” their responsibility to support neurodevelopmental follow-up for these children [Supplementary Table 4, H1]. Others felt clinicians may be hesitant to discuss mental health concerns in particular because that could “open a Pandora's box and let it all out… and if there's no clear pathway to follow [for management] a lot of clinicians will just prefer not to open the box at all” [P13, Paediatric Cardiologist, New South Wales]. As a result, participants believed families were often heavily burdened with advocating for their child's neurodevelopmental follow-up care and navigating the complex service landscape on their own [Supplementary Table 4, H2].

While growing recognition about the importance of neurodevelopmental follow-up for children with CHD within the medical community was acknowledged as an enabler, many felt that the broader Australian community still did not acknowledge the association between CHD and neurodevelopmental diagnoses [Supplementary Table 4, I1]. Among parents of children with CHD, gaps in understanding persist regarding the importance of neurodevelopmental follow-up care, and their capacity to access services and resources varies. Some parents were also perceived to have misconceptions or variable understanding about the role of different services available to support them, which hindered their uptake or could lead to unrealistic expectations and disappointment. These issues were compounded by a perceived lack of support from the health sector to help families navigate the system and advocate for services [Supplementary Table 4, I2]. On the other hand, when parents were provided with the opportunity to advocate knowledgably for their child, access to neurodevelopmental follow-up care was enabled [Supplementary Table 4, I2].

Engagement of culturally and linguistically diverse (CALD), refugee, and First Nations communities was a commonly reported challenge (n = 21 participants). For many of these families, limited English language and low health literacy contributed to difficulties accessing and understanding healthcare services. Cultural differences were also reported to play a role.

Those interviewed had also observed competing priorities between health, community/cultural events and socioeconomic pressures in these communities which affected attendance at follow-up appointments.

Finally, carer educational level, mental health status, and previous positive or negative experiences with the hospital system were also considered important determinants of access to neurodevelopmental follow-up care. For example, parents who had experienced traumatic stress in relation to their child's cardiac diagnosis or hospitalisation may be more reluctant to return to the hospital setting for follow-up care.

Participants across many regions (n = 19) pointed out the lack of structured programs, processes, and evidence-based guidance for delivering neurodevelopmental follow-up care to children with CHD in Australia [Supplementary Table 4, J1].

This, combined with the silos across services already described, was perceived to contribute to the high variability in how neurodevelopmental follow-up was delivered to children with CHD across the country. Some providers expressed concern that this contributed to inequitable experiences of care for families. Additionally, without systematic processes for identifying and capturing children with CHD who may be at risk, ongoing surveillance is challenging. As a result, the onus for driving follow-up is placed on individual clinicians and families, with children more likely to fall through the gaps [Supplementary Table 4, J2).

The impending publication of National Standards of Care for Childhood-Onset Heart Disease was however, identified as a potential enabler for standardising future clinical practice.

Many participants expressed concerns about the viability of follow-up programs, or clinics, exclusively for children with CHD in Australia. Rather, embedding their follow-up into other existing funded community or hospital services, including maternal and child health, child development, feeding clinics, Indigenous liaison services, private allied health providers, and paediatrics clinics was suggested as a potential enabler to increase access to care. Embedding formal, standardised and widely-available screening tools, such as the Ages & Stages Questionnaire (ASQ), into already existing personal health records was perceived as a positive strategy in several health services. Incorporating multidisciplinary team members into cardiology outreach clinics was also seen as a successful strategy for neurodevelopmental assessment in regional areas. Additionally, well-established and structured follow-up programs for all at-risk neonates (e.g., pre-term, low birth weight) were supporting a proportion of children with CHD who also met eligibility criteria. Expansion of funding and eligibility criteria was suggested as a way for these programs to support more children with CHD in the future. Finally, several participants raised the suggestion of a broader systems-based approach to neurodevelopmental follow-up, expanding beyond these specific populations [Supplementary Table 4, K1].

Many participants (n = 24) commented on specific characteristics of the models of care used in Australia within the context of neurodevelopmental follow-up which either supported or hindered service delivery. Most neurodevelopmental follow-up services and pathways in Australia do not extend beyond young childhood, which was identified as a key shortcoming of current care. In particular, the ability to engage with and surveil school-aged children, who had “aged-out” of child health or developmental services was a challenge. Additionally, a lack of culturally responsive models of care for First Nations people was perceived to be a barrier in delivering care to this population. However, some participants also highlighted instances where services had integrated high levels of cultural support through provider training, adapted assessment tools, and Indigenous staff members, which in turn enabled more equitable care.

Early engagement and neurodevelopmental support of families in hospital was reported to be a key positive component of current care pathways. After this, being able to provide a flexible and tailored approach to follow-up based on context and family needs was a key enabler. This included the use of virtual care for connecting families with health providers, and health providers with each other, where appropriate.

Finally, clinicians felt that the use of simple global screening tools, such as the ASQ (rather than batteries of tests) was helpful.