Young people with childhood-onset disabilities (eg, acquired brain injury and cerebral palsy) are living longer than previous generations owing to advances in medical knowledge and clinical management [1,2]. Research and advocacy efforts have focused on ensuring continuous access to health, education, and social services for youth transitioning from pediatric to age-appropriate and developmentally appropriate adult health care services, to support autonomy and maximize independence in society for capable youth [3-7]. Many youths who age out of pediatric services experience a gap in services designed to meet their adult health and social needs [6,8-12]. Furthermore, finding and accessing the appropriate adult care providers and services is often challenging [8,12,13]. Adult health care providers often lack training related to aging with a childhood-onset disability and supporting the unique health and psychosocial needs of young adults [7,14-16].

Youth and young adults living with disabilities acquired in childhood often have chronic health issues that require frequent health care visits, and yet, few receive the comprehensive services and support they need [8,12,17]. Without seamless, accessible, and appropriate services, health concerns may remain poorly managed or undetected, increasing the risk of preventable secondary health complications and comorbidities in young adulthood [18-21], which may lead, in turn, to increased or inappropriate reliance on acute health services (eg, hospitalizations) [7,13,22]. For example, young adults with disabilities aged between 19 and 27 years, including cerebral palsy, spina bifida, and acquired brain injuries, visit physicians and are admitted to the hospital, on average, 9 times more than that among the general population [17,23]. Results from studies conducted in Alberta, Canada, indicate that individuals providing care for children or adolescents with complex care requirements frequently experience feelings of being overwhelmed, fearful, and isolated [24]. Collectively, this evidence highlights gaps in appropriate care for a growing population of transition-age young adults with disabilities (eg, aged 18-30 y) and their caregivers [7]. Closing this gap and ensuring the successful transition from pediatric to adult services is vital to improve the health and well-being of youth and young adults living with disabilities.

Despite the critical importance of successful transition, there is limited evidence about effective transitional care interventions for young adults with childhood-onset disabilities. Most evaluation studies have been descriptive in nature [7], lack rigor in design [25], and often do not use instruments that are valid and reliable for meaningful evaluation [26]. Furthermore, high variability across practice settings and the siloed nature of health and social services have led to issues with transferability to practice settings and community contexts [7]. Previous evidence syntheses in this area, including a systematic review [25], and clinical guidelines [27] have focused mainly on managing chronic medical diagnoses and failed to address the specific and additional needs of the youth with disabilities. It is important to address this gap, as young adults with disabilities may have diverse requirements as they prepare to transition to adult care settings [28,29]. Thus, there exists a pressing need to develop and implement culturally sensitive, accessible, effective, and fiscally sustainable approaches to youth transition. Cost-effective transitions for young adults with childhood-onset disabilities can be expected to have positive, far-reaching impacts on health and social care systems [30].

Although case navigation is a recognized effective transition intervention [31], a recent systematic review found no studies of peer navigation for transition-age youth with childhood-acquired disabilities [7]. Patient navigation emerged in the 1990s as a model of transitional support across health care settings [32,33]. Patient navigation has been defined as a partnership among the patient; family; members of the care team; and patient navigator, who facilitates timely access to health or community resources and fosters self-management and autonomy through education and emotional support [34]. Patient navigators can be peer (lay) navigators (eg, peers with lived experience) or professional navigators (eg, nurses) [32]. Although patient navigation has historically been implemented in the context of adults with cancer, recent programs have focused on children and youth with complex, chronic conditions [35,36]. Patient navigation has been posited as an intervention for youth and young adults with disabilities by reducing barriers to access and integrating various services in a timely, coordinated manner, thus facilitating seamless transitions in care [37]. For example, NaviCare/SoinsNavi is a professional patient navigation center in Canada that is specifically designed to provide support and assistance to children, youth, and their families who are dealing with complex care needs [38]. Patient navigation centers such as NaviCare/SoinsNavi play a crucial role in helping individuals and families navigate the complex health care system by offering guidance, information, and coordination of care [38]. Peer navigation is generally defined as an advantageous interaction between a peer navigator and a patient and traditionally involves a trained peer who provides education and support to a patient to promote recommended health care use behaviors (eg, health screening, attending the recommended care events, and adhering to treatment or follow-up care) with the goal of optimizing care [39,40]. Specifically, through the provision of emotional, informational, and appraisal support, peer navigators can increase patient self-efficacy and, consequently, promote the achievement of recommended health behaviors. However, so far, it is not well known whether and how peer navigation can contribute to the delivery of integrated care for youth with childhood-acquired disabilities transitioning to the adult health care system and community services. Thus, studies of the role that patient navigators may have in assisting during these transitions and specific components of such an intervention are needed.

The NexJ Health Wellness Platform is a web-based platform that has been previously used to build peer navigation programs for adults with chronic illness (eg, cancer [41]). The profile and dashboard display users’ personal information that they wish to share with their circle of care members (eg, peer navigators, health care providers, and families). The profile also includes contact information such that the youth or care team can connect with one another via the platform. The dashboard is adaptable, such that the youth can personalize it with their own background or goals. Points are assigned as individuals meet their goals. The care plan is also where navigators can note any action item that youth should be taking to manage their health (eg, medications to take). Related to this aspect, there is a scheduling feature on the program, which is very similar to a digital calendar, where the clients can set up an appointment with their care team members, who will receive this request and schedule the appointment. Reminders of appointments will be facilitated through the scheduling feature. The health library contains resources provided by the study team that are verified by health care professionals and organized into different categories according to conditions, disabilities, mental health, socialization, mindfulness, and health needs. In phase 1, we received initial ideas about how the platform should be modified to build the Compassionate Online Navigation to Enhance Care Transitions (CONNECT) platform, which are presented as part of phase 2, as described in the following sections.

This study aimed to describe the preferred adaptations of this existing web-based platform from the perspectives of youth with childhood-onset disabilities and their family caregivers to develop a web-based peer-patient navigation program called CONNECT. CONNECT aims to be a web-based tool in peer-patient navigation for youth with childhood-acquired disabilities transitioning to adult health care and community services. The development of an evidence-based, patient and family–informed, web-based peer navigation intervention for young adults with childhood-onset disabilities holds the potential to improve transitional care experiences and outcomes [42].

We conducted a qualitative descriptive study using semistructured interviews and web-based focus groups [43,44]. Qualitative description is a commonly used methodology in health care research, whereby the primary goal is to describe a complex construct by staying close to the data elicited from the perspectives and in the words of participants with lived experiences [45]. A qualitative descriptive approach is based on individuals’ experiences and points of view—in this case, on peer navigation [38]. We have reported our methods as per the COREQ (Consolidated Criteria for Reporting Qualitative Research) [46].

The protocol for this study was approved by the (University Health Network Research Ethics Board REB 22-5023). Informed verbal and written consent were obtained from all participants.

The study was conducted in Ontario, Canada, where peer navigation has recently emerged as a novel model of pediatric care provincially [47] but where little is known about patient navigation in the context of transition-age youth with disabilities.

A convenience sampling strategy that combined criterion and snowball sampling was used to recruit English-speaking youth, aged between 19 and 30 years with cerebral palsy, intellectual disabilities, or acquired brain injury, and their caregivers [48]. Individuals who were unable to communicate in English were excluded from the study. The recruitment process primarily involved 2 health care organizations that maintain email lists of clients interested in research projects related to youth living with disabilities. The research coordinator used the email list to send invitations to individuals, and in addition, administrators at these organizations verbally promoted the study during group support sessions. Furthermore, social media advertisements were used to reach a wide audience of eligible participants. As part of the snowball sampling approach, at the end of the interview, participants were encouraged to actively inform their peers about the study, facilitating the expansion of our participant network. Eligible participants were subsequently contacted by a study coordinator to obtain informed verbal and written consent. It is important to note that none of the participants had previous affiliations or associations with the research team, ensuring impartiality in data collection.

We initially set a predetermined sample size goal of 15 to 25 participants, which was informed by existing guidance for qualitative research, where the aim is to reach a point of saturation at which new data no longer significantly contribute to the emergence of additional themes or insights [49,50].

Qualitative researchers are urged to consider how their background and position affect the design, analysis, and reporting of their study [58]. The research team consisted of Canadian researchers with various backgrounds (eg, cultural) and education (eg, trainees, health care professionals, and researchers). Throughout the data collection and analysis process, the research team had frequent discussions to remain cognizant of their own positions and reflect about how these could influence the design of the intervention and the findings. This was the first time the research team had worked with the technology partner. None of the investigators experienced living with cerebral palsy. Throughout the data collection process, we upheld reflexivity by consistently engaging in critical self-reflection and modifying our interview and focus group guides accordingly. This iterative approach empowered us to enhance our questioning techniques and remain responsive to the emergence of new themes and valuable insights.

In total, 24 participants participated in this study, with 5 (21%) participating in both phase 1 and phase 2. Of these 24 unique participants, 8 (33%) were caregivers (all women) and 16 (67%) were youths (n=11, 69% young women; n=5, 31% young men). Most of the caregivers (7/8, 88%) were mothers to a youth with a childhood-onset disability, and a participant was an aunt. Characteristics of the youths and caregivers are reported in Table 1. To secure anonymity, quotations include only the participants’ group (ie, youth or caregiver), sex, diagnosis, and participant ID number. We have synthesized the findings from phase 1 and phase 2 in Figure 1 and Table 2.

In this section, we have outlined the key themes related to the logistics, parental control, multimodal communication, and varied needs for support regarding the use of CONNECT. Figure 1 presents the collective learnings across phase 1 and phase 2.

We have presented the findings from the development process of a web-based patient navigation program that highlighted the preferred adaptations of an existing web-based platform from the perspectives of youth with childhood-onset disabilities and their family caregivers that will be incorporated into a web-based peer-patient navigation program called CONNECT. Participants desired a program that included (1) information about disabilities, (2) self-directed learning, (3) a library of reliable health and community resources, and (4) emotional and social supports. Upon obtaining feedback, we found that participants perceived that CONNECT could help support holistic and developmentally appropriate care needs. Participants also desired a program that was accessible to people with various physical disabilities. Moreover, as with other peer support literature [59-61], we found that for peer navigation to be most meaningful, the navigator should have similar life experiences as the user.

Our findings suggest that youth wanted their personal health information to remain confidential and preferred options of personalized caregiver involvement. Confidentiality is a major factor affecting youth’s decision to access health care services [62]. When health care professionals can assure confidentiality and a trusting relationship, youth are more likely to communicate regarding their needs, engage with follow-up, and develop skills to navigate the health care system [62]. Having a navigator with the same disability and similar life circumstances was viewed as important by participants, as it can help foster trusting relationships. A study of an existing web-based peer navigation program for adult cancer care also found that participants wanted to be matched with a peer navigator who shared common characteristics, particularly the same language and sexual orientation [41]. Optimal Matching Theory, a well-cited theory in the peer support literature that informed CONNECT, suggests that living with a disability or illness creates the need for social support across many aspects of care (eg, physical and occasional) [63]. Matching the support desired with the support provided can enhance outcomes including improved friendship formation, reduced social isolation, and improved mental health [63]. Incorporating simple screening questions regarding language, disability, and sexual orientation may be helpful. It may also be helpful to incorporate specific areas where youth are seeking support, such as emotional, informational, or practical support; their preferred mode of communication; specific modes of web-based delivery; and when and how much the intervention should be delivered. Taken together, these considerations or adaptations may serve to enhance the overall benefits of the CONNECT intervention.

Although there are many definitions of patient navigation [64], implicit in most definitions is the notion that a patient navigator works to meet the health needs of individuals and their families [32]. Our study found that patient navigation should address psychosocial, educational, recreational, and vocational considerations and physical health considerations. In addition to health information, participants also desired information that could facilitate their day-to-day lives such as locating restaurants that are accessible for people with disabilities. Moreover, an important finding from this study was that despite the positive views about having peer support offered in various ways (eg, forum and via the navigator), participants also wanted the information shared and discussed to be vetted by a trained professional. Thus, opportunities for peer navigators to routinely work alongside health care professional navigators may be worth considering in future studies and programs, as current interventions often include solely lay or professional navigators, rather than both [65,66]. For example, youth desired emotional support during times of crises, indicating an example of where care can be better facilitated through trained professionals. Future studies should begin to explore navigation programs that include a combination of professional and peer support and programs that have professional oversight of peer navigators to determine whether and how they can be effectively integrated into transitional support interventions to optimize peer navigation delivery for youth with childhood-acquired brain injury, intellectual disabilities, and cerebral palsy and their families. Our findings provide the preferred requirements for a web-based peer navigation program for youth with childhood-acquired disabilities transitioning from pediatric to adult care. Future studies focused on refining the CONNECT program have the potential to improve the transitional experiences and outcomes of youth living with childhood-acquired disabilities and their families. The age and developmental variations among youth with complex care needs complicate the logistics of patient engagement with the intervention, as tailored approaches are essential owing to diverse cognitive and communication abilities [67,68]. Therefore, addressing these logistical challenges while maintaining a patient-centered, coproduced approach is paramount in the refinement of the CONNECT program.

In a meta-analysis of randomized controlled trials to determine the effects of patient navigation on health care use outcomes, Ali-Faisal et al [69] determined that compared with usual care, patients who received patient navigation were significantly more likely to access health screening and attend a recommended follow-up. Peer-patient navigation was also associated with increased adherence to cancer care follow-up treatment and obtaining early diagnoses [69]. Moreover, data from published studies reporting telehealth solutions for people living with illness or disability suggest the delivery of patient-centered care, relationship building between professionals and patients [68], and supporting medication adherence and health system cost savings [70]. Future directions for this program of research will include evaluating the effectiveness and health economic impacts of an optimized CONNECT intervention in a large-scale, pragmatic, randomized controlled trial. Benefits of the CONNECT program could include increasing participants’ knowledge, skills, and confidence in managing health care transitions and health-related quality of life. The results of a future randomized controlled trial may help determine the potential of CONNECT for wide dissemination and public health impact, if it demonstrates effectiveness.

We acknowledge that implementing CONNECT in real-world clinical practice entails multifaceted challenges. Successful implementation of patient navigation programs within health care systems necessitates planning, funding, multidisciplinary engagement, workflow establishment, communication mechanisms, knowledge user support, appropriate caseload management, and in-kind resource allocation [71]. Thus, to ensure a fit with existing health and social care systems, careful consideration must be given to how the CONNECT system aligns with established health care workflows, processes, and roles [72,73]. Future implementation studies are required to determine who will provide the initial instructions to both users and administrators and are essential for successful adoption. In addition, addressing the provision of ongoing technological support is vital to resolving any technical issues promptly and ensuring seamless operation of CONNECT in the community setting (ie, home) [74]. Thoughtful planning regarding these aspects will play a pivotal role in the effective implementation and sustainability of the system within the complex landscape of health care practices.

This study had some limitations. Most notably, participant selection was biased toward individuals who had high-speed internet and telephone service, as they were more likely to participate in the interviews and focus groups. As such, the needs of individuals living in rural and remote areas, who may be without high-speed internet, and individuals without access to necessary hardware should be considered [75]. Moreover, our study was limited to individuals who could verbally communicate in English, excluding youth with certain communication impairments or disabilities. Moreover, we only recruited individuals with cerebral palsy, acquired brain injury, and intellectual disabilities. All participants in this study were from Ontario, Canada. As such, the preferences and perceptions of the participants may not be transferable to the desires and perceptions of a broad community of youth living with childhood-acquired disabilities [76]. Beginning our intervention development with an existing platform (ie, iterating on an existing platform) may have limited the opportunity to meaningfully co-design the CONNECT program. Finally, our participants explored the existing platform without actual interactions with the peer navigator. By deploying the patient navigation intervention, future studies could also assess its ecological validity [77].

This study describes the development of CONNECT, a web-based peer-patient navigation intervention for youth with childhood-acquired disabilities to support transitions from pediatric to adult care. Our findings reveal that youth desire receiving peer support from an individual with similar life experiences through multimodal communication techniques and with assurance of confidentiality. At the same time, participants highlighted that for web-based patient navigation to be age appropriate and developmentally appropriate, it must involve trusting relationships and vetted information. Future studies are needed to further refine CONNECT before determining its effectiveness in real-life settings. To the best of our knowledge, this study is the first to explore the desires of youth and their caregivers regarding web-based patient navigation and a codeveloped potential technology solution; however, additional studies are needed to expand the knowledge about the benefits of web-based patient navigation for youth with childhood-acquired disabilities to support transitions from pediatric to adult care.