Children and youth with special developmental needs (neurodisability) represent up to 9% of the general population of children in Canada.[1,2] The terms neurodisability and neurodevelopmental disorders and disabilities[3,4] encompass developmental delays, autism spectrum disorder, attention deficit hyperactivity disorder, and intellectual disability, as well as medical conditions associated with developmental challenges, such as cerebral palsy, fetal alcohol spectrum disorder, Down syndrome, and other genetic conditions. Affected children and youth require services and supports to promote and optimize their developmental potential; address challenges with mobility, communication, learning, and daily living skills;[5] and address issues with social-emotional-behavioral functioning, which frequently co-occur.[6] Parents and families may themselves require services and supports to enable them to fulfill the crucial role they play in nurturing healthy development.[7]

Services and supports for children and youth with neurodisability are usually needed over the course of the childhood years and into adulthood, often from a diverse array of sources. There is ample documentation on how families struggle to identify and access the services and supports they need over time and to navigate the terrain of systems that may be obscure, siloed, and poorly coordinated.[8-11]

Patient navigation has emerged as a useful strategy in health care and is relevant to most forms of complex care, including childhood neurodisability. In this context, we expand the focus of care and services to include medical, rehabilitation, education, and social services, all of which affect the healthy development and well-being of affected children and youth. Patient navigation seeks to make disconnected services more accessible, coordinated, integrated, and individualized to each patient’s and family’s needs. Those in navigator roles assist individuals and families by providing information and emotional support and by working to reduce existing barriers.[5,12] Physicians may not see themselves as navigators, but by providing longitudinal care in community settings, they have an important role to play: supporting patients and families in navigating the existing patchwork of programs and agencies, and helping them identify and connect to needed services and supports.

Our aims are threefold: (1) to raise awareness among physicians in BC of the vital role that family support and navigation can and should play in the life and experience of these families; (2) to disseminate the most salient learnings from our work in this area; and (3) to summarize the key resources that physicians, particularly family practitioners and pediatricians, need to know about to work in synergy with existing navigational resources.

Improving navigational supports and services

With support from the Kids Brain Health Network, work to date has examined how navigation support services for children and youth with neurodisability and their families currently work in BC and has been aimed at improving the status quo through engagement and collaboration with stakeholders. The project provincial advisory group, which included representation from the affiliated academic health centre, government (BC Ministry of Children and Family Development), community-based agencies with a central mandate to support families in which a child has a neurodisability, and parents of affected children and youth, determined at the outset that there was no need to create a new navigational support system for BC because many individuals and agencies already provide navigation as a central part of their mandates. However, the provincial advisory group identified three barriers that reduce the efficiency and effectiveness of existing resources but are amenable to efforts to improve the situation:

1. The nature and scope of navigation and navigational work for this population are not well known or well understood in BC. This includes basic terminology and consensus about activities that fall in and out of scope.
2. Individuals and agencies that do navigational support work do not always know who else is doing this kind of work or the details of what others are doing (or aiming to do).
3. Service providers whose primary role is clinical interventions aimed at children and youth but who do navigational support work “off the side of their desks” are often unaware of or unfamiliar with the family support navigational players and agencies for whom this is a primary mandate.

Key concepts underpinning navigation, and range of terminology

Our understanding of the key components of navigation for children with neurodisability and their families emerged from activities undertaken to address barriers 1 and 2: a scoping review of the relevant literature,[13] surveys of service providers and families in BC during the course of the project (unpublished), and a virtual summit on navigation[14] (with a subsequent summit regroup convened 8 months later). The main summit convened more than 120 professionals and families over the course of two half days and featured presentations from family members, service providers, and researchers about family support navigation for children and youth with neurodisability. Attendees also participated in various collaborations and facilitated exchanges, in which they considered what could be done to improve navigation supports and related activities for families and to build a provincial community of navigation.

Two main conclusions resulted from these activities. First, numerous terms are used to describe various interrelated activities related to navigation, as illustrated in the word cloud [Figure 1 [11]] that was created from the terms that were extracted; each term’s size is based on the frequency with which it arose in our scoping literature review. Our surveys and summits similarly showed that real-world professionals had job titles that comprised many of these terms.

Consultations with stakeholders and partners did not provide a single, clear solution for how to refer to this kind of work in the context of childhood neurodisability. The term “family support navigation” emerged as a highly relevant hybrid term, even when used as a placeholder. That term can arguably be extended to include the closely related concepts of care or service coordination.[13]

Second, the aggregate of interrelated activities that constitute family support navigation was comprised of three fundamental components: providing functions, facilitating functions, and a set of guiding principles [Table 1 [12]].

The main learnings related to terminology and concepts of family support navigation are depicted in Figure 2 [13].

Improving family support navigation services and experiences

The January 2021 navigational summit provided a number of main findings and takeaway messages regarding how key stakeholders view the path forward for improving family support navigation services and experiences in BC:

• Peer-to-peer supports are highly valued by parents.
• Navigation approaches must be individualized; there is no “one-size-fits-all” approach.
• There is a need for a centralized web-based resource primarily for the use of people engaged in navigational support work.
• Navigators want to remain connected to one another.
• There is a need to simplify the system of services and supports for children with neurodisability and their families.

These key points were affirmed at a BC navigation summit regroup in September 2021. It was also suggested that closer connection with existing provincial resources be developed (e.g., HealthLink BC 8-1-1 and BC 211 [https://bc.211.ca [14]]—a free information and referral resource) and that knowledge translation for clinical service providers (e.g., community physicians) be conducted to raise awareness of dedicated navigators and agencies and to promote referrals to them. Knowledge translation is part of addressing barrier 3.

Key resources for family support navigation services

Information on navigational and family support agencies and organizations in BC was assembled from an environmental scan, surveys, material submitted at registration and during the course of both summits, and referrals from partners [Table 2 [15]]. It is not exhaustive but serves more as a framework, and it provides exemplars of organizations and agencies rather than a comprehensive list of all of them. We hope this information will better equip physicians and their staff in finding relevant resources within their own communities to help the children, youth, and families they care for.

Conclusions

Throughout this project, a distinction arose between professionals doing family support navigation work as a primary role versus doing it off the side of their desk, even though it is not a simple matter for many professionals to separate these two roles at the front lines of patient care. Side-of-desk assistance with navigation and support of families is often asked of providers whose primary mandate is clinical care of the child. Many providers will be asked to also help the child’s family navigate a complex, opaque, and disparate array of services, supports, programs, and providers—for example, “Where can we find help or support for their sleep issues?” or “How do we pursue our need for respite care?”—problems and situations that arise from or coexist with the child’s primary area of impairment or disability. Families want, and need, to know how to go about connecting to those who provide this help or support.

We have sought to bring explicit focus to the family support navigation work that complements a more traditional view of the child or youth as patient. The World Health Organization’s International Classification of Functioning, Disability and Health[15] recognizes the patient’s environment as a key contextual factor affecting health outcomes; this is particularly salient in the case of children with neurodisability or other chronic complex care needs. In this context, “environment” refers primarily to the family, but also to available services and supports the child and family have to connect to. The role of family in contemporary child health care, particularly for those with disabilities, is well expressed by Dr Peter Rosenbaum, professor of pediatrics at McMaster University and co-founder of the CanChild Centre for Childhood Disability Research (email communication, 2 August 2022; see also [16,17]):

“It is a truism in child health—but one too easily ignored—that the unit of interest for all health care providers must be the child’s family—the children’s ‘agents’ and advocates, who seek help on behalf of their children and are expected to carry out the best of the advice offered by health professionals.”

Physicians straddle the divide between providing clinical service and helping families find and connect to services. Importantly, they do not need to provide all the family support navigation work themselves. In the United States, there has been interest in, and some programmatic funding directed at, establishing “medical homes” for children and youth with complex care needs, including neurodisability.[18,19] This envisages the pediatrician, in close collaboration with allied disciplines and staff, providing an expanded range of services and supports, which extend to the care coordinating as family support navigation roles.[20] Innovative hospital-based models are beginning to emphasize the role of allied disciplines, such as social work, in providing longitudinal and supportive care to children and families, which will take the pressure off physicians.[21] There may be scope to advance the navigational aspect of care in BC, even though the funding context for physician and allied professional services is very different in BC than in the United States.

One way would be to explore innovations for this kind of service to be office or practice based, such as employing “teamlets” for chronic condition care that include nurse practitioners and/or social workers.[22] Even within current parameters, it seems feasible to explore whether office staff who are properly prepared and informed can assist with this role by helping identify the family’s needs and knowing what services and resources are locally available. Another approach would have the navigation support person based in a community agency but be more closely linked with one or more physicians and practices. This would require investment in establishing closer, deeper, and reciprocal links between these professionals. An important first step is for physicians to learn more about existing agencies and organizations, both those in the immediate community and those with a provincial scope, that provide family support navigation services as a primary mandate. One of our aims is to bring the existence and scope of these providers to the attention of physicians. We hope the information in Table 2 [15], while limited, will be a useful resource for physicians.

A final aim is to communicate some messages from this project that were heard consistently and that physicians should keep in mind: many families place importance on connecting with peers and peer supports during their journey; navigational supports defy a simple one-size-fits-all model, so it is important that options are available and families are empowered to seek what fits best for them; and navigators want to be better connected to each other and to clinicians to ensure that the work they do is visible and valued on the health care continuum and they can do their best for children, youth, and families living with neurodisability.

Competing interests

None declared.

This article has been peer reviewed.

[16]

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License [16].

Dr Miller is a clinical associate professor in the Department of Pediatrics, Division of Developmental Pediatrics, at the University of British Columbia; a developmental pediatrician at Sunny Hill Health Centre; and a senior associate clinician-scientist at the BC Children’s Hospital Research Institute. Dr Gardiner is a postdoctoral fellow in the Department of Pediatrics at UBC and at the BC Children’s Hospital Research Institute. Ms Wong is a research coordinator with the Sunny Hill Health Centre and a master’s trainee in the Rehabilitation Sciences program at the University of British Columbia.