INTRODUCTION
Autism spectrum disorder (ASD) is a term that encompasses a range of neurodevelopmental disorders characterized by early-onset social communication deficits and repetitive sensory-motor behaviors. This condition is associated with a significant genetic component, as well as various environmental factors that may contribute to its development[1]. The prevalence of ASD has been increasing, with recent estimates indicating that approximately 1 in 36 children are affected[2]. This rising prevalence imposes substantial demands on families and healthcare systems[3]. The complex needs of individuals with ASD often require intensive, long-term support from both healthcare providers and family caregivers. However, access to high-quality, specialized autism care remains challenging for many families, particularly those in rural or underserved areas[4].
In recent years, remote support and telemedicine have emerged as promising approaches to expand access to autism care and provide ongoing assistance to families[5]. The coronavirus disease 2019 pandemic has caused significant and abrupt disruptions to ongoing therapeutic interventions, further accelerating the adoption of telehealth services across healthcare fields. This extraordinary situation prompted community services worldwide to swiftly implement telehealth solutions, ensuring uninterrupted care and consistent daily-life engagement for children with ASD[6]. Specifically, for autism care, remote support offers opportunities to deliver interventions, provide parent training, and facilitate care coordination in the home environment. A systematic review incorporating 19 studies involving 366 participants revealed that telemedicine-based interventions are as effective as conventional face-to-face treatments and come with reduced expenses[7]. Furthermore, a recent randomized controlled trial conducted by Lu et al[8] assigned 140 parents of autistic children to two groups receiving a 2-week intervention and found that the integration of remote support courses with traditional interventions, compared with traditional caregiver-mediated interventions alone, can significantly reduce parental stress, increase parents’ feelings of efficacy, and increase their enthusiasm for training. This approach has the potential to improve the development of individuals with ASD.
Therefore, this essay explores how remote support can enhance autism care through a family-centered approach. We examine the potential benefits, key components, and implementation considerations for family-centered remote autism support. By leveraging technology to empower and engage families, remote support has the potential to improve outcomes and quality of life for individuals with ASD and their caregivers.
FAMILY-CENTERED CARE FOR AUTISM
Family-centered care is an essential approach in the management and support of children with ASD and their families. This model emphasizes the importance of collaboration between families and healthcare providers, ensuring that the needs and preferences of families are prioritized in the care process[9]. The implementation of family-centered care in various settings, including outpatient rehabilitation facilities and emergency departments, has been shown to enhance parent satisfaction and improve health outcomes for children with ASD[10,11].
Parents of children with ASD often experience higher levels of stress than parents of typically developing children do[12]. This stress is attributed to the unique challenges associated with ASD, such as communication difficulties, behavioral issues, and the need for intensive and ongoing interventions[13]. A family-centered approach aims to build on family strengths, address family needs and priorities, and promote family empowerment and quality of life by acknowledging parents and caregivers as experts on their child and essential partners in treatment[14]. Research indicates that family-centered care in individuals with autism is associated with improved child and family outcomes, including enhanced caregiver well-being, increased adherence to treatment plans, reduced emotional distress, and improved family satisfaction with care[15].
However, implementing comprehensive family-centered care can be challenging in traditional clinic-based autism care models. Barriers may include time constraints, a lack of provider training in family-centered care principles, and limited opportunities for ongoing family support between appointments[16]. Remote support offers unique opportunities to overcome some of these barriers and enhance the delivery of family-centered autism care.
BENEFITS OF REMOTE SUPPORT FOR FAMILY-CENTERED AUTISM CARE
The integration of remote support into family-centered care for children with ASD presents numerous advantages that can enhance the overall well-being of both children and their families. Remote support, including telehealth, mobile health apps, and online platforms, has emerged as a viable solution to address the challenges faced by families, especially those residing in regional and remote areas, or during exceptional periods[5].
One significant benefit of remote support is increased accessibility to specialized services. Families often encounter barriers to accessing in-person therapy due to geographical constraints or a shortage of qualified professionals in their localities[17]. By utilizing technology, families can connect with a multidisciplinary team of specialists, including speech-language pathologists, occupational therapists, and psychologists, without the need for extensive travel[18,19]. This not only saves time and resources but also ensures that children receive timely interventions tailored to their unique needs. Moreover, the significant delay between parents expressing concerns and receiving a formal ASD diagnosis can be effectively mitigated by utilizing remote support, which has the potential to shorten waiting times for both parents and primary health providers during the ASD screening and diagnosis process[20]. A recent scoping review encompassing studies from 2000 to 2019 suggested high agreement between remote and face-to-face diagnostic methods, along with positive feedback from both families and clinicians regarding satisfaction with telehealth services[21]. This evidence supports the notion that the remote family-centered approach may be ideal for families with children who have ASD, as it can improve access to timely diagnosis and ongoing support.
Furthermore, remote support fosters collaboration among family members, educators, and healthcare providers. The ability to engage in real-time consultations allows for a more coordinated approach to care, where families can share insights and strategies with professionals and receive immediate feedback[18]. This collaborative model is particularly beneficial for families of children with ASD, as it promotes a shared understanding of the child’s needs and progress[22], and allows for more ecologically valid assessment and intervention[23], ultimately leading to better outcomes. Two recent randomized controlled trials on telehealth parent training have demonstrated that parent-focused telehealth interventions led to significant improvements in parent fidelity gains (the degree to which parents adhere to the intervention), program satisfaction[24], and reductions in psychological distress[25]. Moreover, these interventions were associated with improved social communication skills in children[24] and a decreased frequency of behavioral disorders among children[25]. These findings underscore the potential of telehealth parent training as an effective intervention strategy for improving both parental and child outcomes. In sum, family-centered remote support can improve communication and information sharing between families and multiple providers involved in a child’s care[26], ultimately enhancing the overall quality of care and support provided to the child.
In addition, remote support offers a valuable means of alleviating the stress associated with caregiving for children with special healthcare needs. Parents often report feeling overwhelmed by the demands of their role[27]. Tele-therapy provides much-needed respite, enabling parents to engage in self-care while ensuring that their child continues to receive the necessary support, which leads to higher parental satisfaction and reduced stress[28]. Furthermore, the flexibility of remote sessions allows for easier integration of therapy into the family’s schedule. Perhaps more significantly, remote support fosters greater family involvement in care planning and decision-making[29], empowering families with the knowledge and connections essential for effective caregiving.
In conclusion, the benefits of remote support for family-centered autism care are multifaceted, encompassing increased accessibility, enhanced collaboration, and reduced caregiver stress. As the demand for autism services continues to grow, leveraging technology to provide remote support will be crucial in meeting the needs of families and improving outcomes for children with ASD.
KEY COMPONENTS OF FAMILY-CENTERED REMOTE AUTISM SUPPORT
In light of the essential role of family-centered care in supporting families of children with ASD[30], this editorial synthesizes the key components of family-centered remote autism support, emphasizing the importance of technology integration, collaboration, communication, progress monitoring, tailored support services, peer support networks, and feedback mechanisms.
Utilization of technology
The implementation of evidence-based practices for remote autism support must consider the accessibility and usability of technology[31]. Telehealth platforms, mobile health applications, and online resources provide families with access to expert guidance and support. Recent research specifically investigated various telehealth intervention modalities, including video feedback and psychoeducation, and revealed that parents who engaged in video feedback reported the highest levels of compliance and participation[6]. The use of video conferencing, online modules, and digital communication tools can provide families with the flexibility they need while ensuring that they receive timely support. This allows families to participate in support services without significant disruptions to their daily activities. In the context of family-centered remote autism support, the development of user-friendly tools is essential for enhancing collaboration and productivity among family members and caregivers.
Collaboration, communication, and progress monitoring
Effective remote support requires establishing open lines of communication between families and service providers. This encompasses regular check-ins, progress updates on the child, and discussions regarding challenges the family may encounter as well as the online resources they might require[32]. Engaging families in the decision-making process fosters a sense of ownership and empowerment, which is crucial for their overall well-being and the effective implementation of interventions[29]. Customizable dashboards could offer flexibility in task management, progress tracking, and automation of routine tasks, thereby meeting the specific needs of families. These features not only inform ongoing treatment planning but also help families understand the impact of their efforts[33]. Collectively, by establishing open communication channels, engaging families in decision-making, and leveraging customizable tools such as dashboards, we can empower families, enhance the implementation of interventions, and ultimately improve outcomes for children.
Tailored support services
Recognizing that each family has unique needs is vital. Remote support services should be adaptable, considering the family’s specific circumstances, such as the child’s age, developmental level, and specific stressors[34]. Remote support should facilitate the collaborative development of personalized intervention plans that align with family priorities and routines. One effective approach is the implementation of web-based behavioral skills training programs. For example, a recent study demonstrated that such remote health services led to a significant reduction in targeted behavioral disorders and improved psychological well-being for both children and their parents[25]. Moreover, the use of wearable technology, such as the Superpower Glass intervention, has been shown to improve socialization outcomes for children with ASD[35]. This digital intervention reinforces social skills through real-time feedback[35], indicating that integrating tailored technology into remote support services can enhance engagement and learning for both children and parents. In conclusion, the provision of tailored remote support services, which incorporate personalized intervention plans and innovative technologies, is crucial for addressing the diverse needs of families with ASD children.
Peer support networks
Peer support networks are instrumental in enhancing remote support services for families of children with ASD. These networks provide a platform for family caregivers to share experiences, resources, and emotional support[36], which can be particularly beneficial in a remote context where traditional face-to-face interactions may be limited. A recent study implementing the World Health Organization Caregiver Skills Training Program for families of autistic children in rural areas revealed that group meetings facilitated meaningful connections among participants, fostered a sense of community, and strengthened support networks[37]. Remote support should connect families with peer networks and local community resources to combat isolation and build social support[38]. Additionally, informal support from extended family members can alleviate stress and improve family quality of life[39]. Thus, remote support services should also focus on facilitating family engagement and communication. This could involve virtual family counseling sessions or workshops that promote effective communication and problem-solving skills among family members[40]. In summary, by connecting families with peer networks and local resources, remote support can effectively combat isolation, build social support, and enhance the overall well-being and quality of life of both children with ASD and their families.
Feedback mechanisms
Feedback mechanisms play a crucial role in enhancing remote support services for families with ASD. One of the primary benefits of feedback mechanisms is their ability to enhance communication between families and service providers. For instance, remote monitoring support services have been shown to improve the quality of care for individuals with intellectual and developmental disabilities, including those with ASD, by allowing for continuous feedback and adjustments to care plans on the basis of real-time data[41]. Implementing feedback mechanisms of family-centered remote autism support allows families to voice their experiences and suggest improvements to the support services they receive. This continuous feedback loop can help service providers refine their approaches and better meet the evolving needs of families[42]. Feedback mechanisms are also essential for empowering parents by providing them with the necessary tools and knowledge to implement interventions effectively. They reinforce parents’ efforts and highlight the progress made, fostering a sense of accomplishment and commitment to the intervention[43]. Moreover, by incorporating feedback mechanisms, such as caregiver reports and video assessments, service providers can gather valuable insights that inform diagnostic decisions and interventions. This not only enhances the accuracy of diagnoses but also ensures that families receive timely support, which is critical for early intervention[44].
In summary, family-centered remote autism support emphasizes collaboration, respect, and the unique needs of each family, ensuring that interventions are tailored to their specific circumstances. By integrating these key components mentioned above into family-centered remote autism support, service providers can create a more effective and responsive system that truly addresses the needs of families navigating the complexities of autism care.
IMPLEMENTATION CONSIDERATIONS OF FAMILY-CENTERED REMOTE AUTISM SUPPORT
Telehealth interventions for ASD have been shown to be as effective as in-person services in improving child outcomes and caregiver engagement and satisfaction[45]. While remote support offers significant potential to enhance family-centered autism care, its implementation requires careful consideration to ensure that it is effective and user-friendly.
Technology access and usability
Access to reliable internet and technology is a prerequisite for the effective delivery of family-centered remote autism support. Families and professionals must be provided with the necessary equipment and training to use the technology confidently[46]. This includes training in the use of video conferencing platforms, online training modules, and any additional software or hardware required for intervention delivery. A recent randomized trial revealed that online parent training for executive function interventions led to a reduction in caregiver strain and modest improvements in child flexibility, emotional control, and global executive function[47]. In conclusion, ensuring access to reliable technology and comprehensive training is essential for the successful implementation of family-centered remote autism support. Additional studies are needed to identify the ideal frequency of sessions for remote family-centered care and explore strategies for improving the accessibility of telehealth services for families with limited financial resources[48]. Importantly, artificial intelligence can significantly enhance remote support services by providing tailored information based on individual family needs and preferences. For instance, a recent study assessing ChatGPT-4’s provision of autism-related information found it to be generally accurate, concise, and clear[49], indicating that it is a promising tool for parents seeking reliable autism information.
Professional training
While both remote and in-person training face certain shared challenges, issues that are not exclusive to remote service delivery may occur more frequently or prove more difficult to address owing to the physical separation between practitioners and caregivers[50]. Thus, training professionals in the delivery of remote interventions is essential. This includes not only technical training, such as access to equipment and addressing connectivity issues[50], but also instruction in the unique aspects of providing services remotely, such as adapting intervention strategies to a virtual environment and maintaining effective communication with families[45]. Moreover, healthcare providers require training in family-centered care principles to effectively leverage remote support[15]. Notably, virtual reality offers immersive experiences that may be particularly beneficial for children with ASD. For example, virtual reality interventions can simulate social interactions, allowing children to learn and practice appropriate responses without the anxiety that may accompany real-life situations[51]. Furthermore, virtual reality can also serve as a platform for family members to participate in therapeutic activities together, thereby strengthening family bonds and enhancing the overall support system[52].
Assessment and feedback
Developing and validating assessment tools for remote use is critical for monitoring progress and evaluating the effectiveness of interventions[43]. In the development process, it is necessary to involve stakeholders, including families. Engaging parents and children in identifying important outcome areas can enhance the relevance and applicability of tools, ultimately leading to more effective interventions[53]. Establishing feedback mechanisms is equally important, as they allow for continuous improvement of intervention plans based on the child’s progress and the family’s input. Healthcare practitioners should take training to enhance knowledge, resources, and tools to facilitate medical visits, as well as to encourage ongoing reflection and reconfiguration of the infrastructure of medical environments[16]. Additionally, artificial intelligence can facilitate the development of virtual assistants that provide real-time support and resources to families, helping them navigate challenges and access information quickly[54]. These mechanisms ensure that support remains relevant and adaptive to the evolving needs of the family.
Data security and confidentiality
The integration of technology in autism support requires careful consideration of privacy and security protocols to protect sensitive information shared during telehealth sessions[18]. In virtual consultations, the risk of exposure may increase due to the nature of digital communication, highlighting the need to ensure that medical documentation and communication channels are secure to maintain confidentiality[55]. To achieve this, healthcare providers should implement robust security measures such as encryption, multifactor authentication, and regular security audits to protect patient data and privacy[56]. Additionally, ensuring that only authorized individuals have access to personal health information is essential[57]. Strengthening security measures not only safeguards personal information but also fosters trust between families and healthcare providers. As Gabellone et al[58] emphasized, addressing parents’ concerns about telemedicine, particularly those related to the security of their children’s data, would encourage their participation in remote support programs.
Cultural sensitivity and family preferences
Interventions should be culturally sensitive and adaptable to the diverse needs and preferences of families. This encompasses a comprehensive consideration of numerous factors such as language, cultural practices, and family values in the design and implementation of remote support services[59]. For example, cultural practices, which vary widely across different communities, can shape the acceptability and effectiveness of support strategies. Furthermore, a hybrid model combining in-person and remote care may be ideal for some families with autistic children[16]. For example, this approach may greatly benefit parents who need both direct interaction skills guidance and flexible learning options[24], as well as those who find it easier to engage with therapeutic practices at home, while still receiving necessary in-person support from therapists due to complex clinical presentations[60,61]. This combination ensures that they receive the tailored and comprehensive care their children need.
Thus, the implementation of family-centered remote autism support should consider ensuring widespread technology access and usability, equipping professionals with the requisite technical and clinical training for remote service provision, and incorporating robust assessment, feedback, and data security mechanisms. Moreover, interventions should also be culturally sensitive, and adaptable to family preferences. Importantly, the empirical foundation for family-centered remote autism support is still in its infancy. Future research should focus on exploring the mechanisms and conditions that contribute to the effectiveness of family-centered remote autism support. In other words, understanding what works for whom and under what conditions is essential for effective service delivery.
CONCLUSION
Remote support offers promising opportunities to enhance the delivery of family-centered care for individuals with autism and their families. By leveraging technology to improve access, increase engagement, and empower caregivers, remote support can address many of the challenges in traditional autism care models. However, careful consideration should be given to implementation factors to ensure that remote support effectively meets the diverse needs of families affected by autism. With thoughtful design and implementation, family-centered remote support has the potential to significantly improve outcomes and quality of life for individuals with ASD and their caregivers.
Finally, despite these promising findings, several limitations should be noted. Many studies had small sample sizes, were non-randomized controlled studies, and had short intervention durations, which limited the generalizability of the results. Additionally, the lack of long-term follow-up data makes assessing the sustained impact of remote interventions challenging. Future research should aim to conduct large-scale, randomized controlled, long-term studies to validate the effectiveness of family-centered remote autism support. Moreover, exploring the integration of advanced technologies such as artificial intelligence and virtual reality could enhance the delivery and impact of family-centered remote interventions.
Provenance and peer review: Invited article; Externally peer reviewed.
Peer-review model: Single blind
Specialty type: Psychiatry
Country of origin: China
Peer-review report’s classification
Scientific Quality: Grade B, Grade C, Grade C, Grade C, Grade D
Novelty: Grade B, Grade B, Grade B, Grade C, Grade C
Creativity or Innovation: Grade B, Grade B, Grade B, Grade C, Grade C
Scientific Significance: Grade B, Grade B, Grade B, Grade B, Grade C
P-Reviewer: Daldoul M; Maoz H; Zhang GC S-Editor: Wang JJ L-Editor: A P-Editor: Yu HG
