Family caregivers (hereafter referred to as caregivers) of individuals with neurodevelopmental disabilities (NDDs) report high levels of stress, anxiety, and depression [1-3]. Their vulnerability was highlighted during the COVID-19 pandemic, when they had to navigate the sudden loss of structure, support, and routine for their loved ones [4]. Unfortunately, few evidence-based interventions are available to support the well-being and resilience of caregivers. Furthermore, these programs are limited in scope (eg, restrictions around age or disability of the individual being cared for), or in availability (eg, only in regions with extensive resources) [5,6].

Caregiver interventions help support the caregiver and, by extension, the entire family, including the child with a disability or neurodevelopmental condition [7]. While caregivers may benefit from individual support, group-based and peer-led interventions may confer additional benefits, address feelings of isolation and provide opportunities for personal growth, connection, and mutual learning [8,9]. Typically, these interventions are delivered by trained clinicians [10]; however, there is emerging evidence that caregivers can also play an important role as peer cofacilitators, ultimately empowering caregivers’ voices while enhancing the success and feasibility of interventions [11].

To support caregivers of children with autism, early evidence demonstrated the benefits of acceptance and commitment training (ACT), a mindfulness-based workshop [12], as well as a study demonstrating the engagement of mothers as peer mentors in delivering a mindfulness-based intervention [13]. On the basis of our previous work using ACT in nonclinical populations to promote well-being and address issues related to stigmatizing attitudes, we adapted a 2-day in-person group-based ACT workshop for caregivers of children with autism to increase their resilience in the face of stressors, co-delivered by caregivers and clinicians together [14,15].

Early efficacy research demonstrated that our in-person ACT workshop was effective in reducing stress, depression, physical health concerns, and social isolation in mothers of children with autism and youth [16]. Additionally, the workshop helped these caregivers detach themselves from their distressing thoughts and act in ways that were more consistent with their values [14]. In a follow-up randomized controlled trial (RCT), caregivers of individuals with autism who participated in the workshop showed significant improvements in symptoms of depression and family distress relative to a waitlist control group, as well as significant treatment group improvements in stress, psychological acceptance, and cognitive fusion, which were not found in the waitlist group [17]. Workshop respondents also reported that a key element to the success of the workshops was the caregiver-clinician partnership. We have started to explore the use of our workshop for caregivers of other NDDs, such as individuals with fetal alcohol spectrum disorder (FASD) [18]. With the onset of the pandemic, we adapted our in-person group workshop into a virtual group workshop. Virtual delivery also addressed access barriers, such as a lack of childcare, distance from services, and transportation costs.

The aim of this study is to evaluate the community implementation of the Caring for the Caregiver ACT (CC-ACT) model, designed to enhance the mental health and resilience of caregivers of individuals with NDDs, co-delivered by caregiver-clinician facilitation teams. Our research objectives and questions are presented in Textbox 1.

The study is guided by the reach, effectiveness or efficacy, adoption, implementation, and maintenance (RE-AIM) implementation science framework [19], providing an overarching structure to examine the processes and outcomes of the real-world implementation of evidence-based health workshops in 5 areas: reach, effectiveness, adoption, implementation, and maintenance. Reach is a measure of participation at the individual level, such as the number or characteristics of program participants. Effectiveness includes an assessment of the positive and negative outcomes of the program. Adoption examines the uptake at the individual or organizational level. Implementation examines the degree to which the program is conducted as intended in various real-world settings. Maintenance evaluates the extent to which the program impact is enduring at the individual and organizational levels.

Our workshop is a group intervention based on ACT, which aims to increase psychological flexibility through training in 6 core processes: defusion (relating to thoughts as merely thoughts), acceptance (willingness to experience thoughts and feelings rather than avoiding them), contact with the present moment (being in touch with the here and now rather than being stuck in the past or worrying about the future), self-as-context (being in contact with a transcendent sense of self rather than being stuck with self-labels), values (clarifying what gives life value and meaning), and committed action (persisting in value-guided actions). The intervention consists of experiential exercises, mindfulness practices, and small and large group reflective sharing [20].

Groups are guided by trained cofacilitators, including at least one clinician with experience in the NDD community and at least one family caregiver of an individual with an NDD. Each group can accommodate 10 to 15 participants. For in-person delivery, the workshop is delivered over 2 consecutive sessions, an evening session (3 h) and a full-day session (8 h), followed by a final evening session (3 h) 1 month later (Table 1; refer to Fung et al [20] for more details on intervention content). For virtual delivery, the workshop is conducted over 4 to 5 consecutive weekly 2-hour sessions, with an additional 2-hour session occurring 1 month later.

The proposed project was conducted in 3 overlapping phases.

Previous studies, including our own work, support the efficacy of CC-ACT to support the mental well-being of caregivers. This study will be important as there is a lack of effective evidence-informed interventions for caregivers of people with NDDs in Canada, and even fewer that have been studied in real-world settings. A meta-analysis found that ACT has significant effects on depressive and anxiety symptoms, stress, and quality of life in caregivers of various chronic conditions such as dementia, chronic pain, asthma, multiple sclerosis, and neurodevelopmental conditions [37]. Findings from this study will help to elucidate the practical implementation of this evidence-informed intervention across diverse settings in Canada, which may also pave the way for scale-up for caregivers of other chronic conditions as well.

All participating sites have successfully recruited and completed their planned workshops. As we formally analyze the data, we anticipate that we will gather nuanced implementation experiences under the RE-AIM framework.

In terms of reach, we will examine the sites’ challenges and successes in recruiting caregivers. Analysis of parameters, such as the preferred time of the year for the workshops, will inform how best to organize and plan caregiver interventions in the future. Furthermore, analysis of the HEIA data, conducted in phase 1, will be valuable in identifying regional and contextualized equity and access barriers, such as ethnicity, gender, SES, and language.

Our earlier work demonstrated the overall efficacy of our workshops among caregivers of people with autism, as implemented in the context of a hospital-based research study [14,16,17]. We anticipate similar positive results with the current protocol. However, we anticipate that the degree of effectiveness may vary with implementation in real-world contexts, for example, due to population differences as well as implementation fidelity. Given the diversity of workshop participants across sites, we expect to be able to identify some predictors of effectiveness (eg, education, ethnicity, and gender) and to examine whether different ACT processes mediate outcomes across participant subgroups. Follow-up data may also shed light on the factors associated with the individual maintenance of ACT skills.

Our evaluation of the implementation across the 11 sites will help us explore and understand the balance between fidelity and adaptation. We anticipate that the workshop fidelity will generally be high, as our intervention exercises have built in flexibility, and we have offered customized coaching to the facilitation teams. Consistent with Lake et al [38], we anticipate that the complementary perspectives of caregiver and clinician facilitators can enhance the experience of facilitator teams as well as the workshop.

With the structure and support provided by the study, all sites successfully adopted the workshop model. We anticipate that the analysis of feedback from site facilitation teams and organizational leadership will reveal factors that facilitate or hinder adoption, as well as identify what is needed for long-term maintenance beyond the study period. Throughout the study, we systematically documented the implementation processes and contextual factors at the participating sites. They will be analyzed to identify common facilitators, barriers, and effective delivery strategies. Insights will be synthesized into a set of evidence-informed best-practice guidelines to support future community-based workshop implementation. These guidelines will include recommendations on facilitator training, participant engagement, cultural and contextual adaptations, and resource planning, with the aim of enhancing scalability, fidelity, and sustainability across diverse community settings.

One of the key strengths of our intervention workshop is its cofacilitation model, as workshops are delivered jointly by caregivers and clinicians. This approach grounds the intervention in lived experience, enhances participant engagement, and promotes relevance to caregivers. Our ACT exercises are uniquely experiential, allowing flexible in-session adaptation to participants’ needs while maintaining fidelity to core principles. Delivery across diverse geographical regions and organizations with varied cultures and challenges enables the examination of contextual factors that influence implementation.

During the study, we developed and refined a detailed protocol, fidelity checklist, and implementation supports (eg, handouts and email templates), as well as a flexible, peer-led coaching system. These supports facilitated the consistent delivery of the workshops in the study, as well as for future use, while providing an opportunity to evaluate the need and effectiveness of coaching in facilitating high-quality implementation. The use of a mixed methods design, guided by the RE-AIM framework, allows a comprehensive assessment of both intervention effectiveness and implementation processes.

This study also has several limitations. It was not conducted as an RCT, which limits causal inference, although RCTs are not always necessary in implementation research. We did not assess child outcomes, despite the potential indirect benefits for the children of participating caregivers—an important avenue for future research. Our outcomes relied on self-report measures, which may be subject to recall and social desirability bias. The study may also be limited by selection bias, as some caregivers might not have been reached by our study due to various systemic factors, and not all workshop participants consented to complete the research study. Although the HEIA tool was used to help identify potential gaps in accessibility, this study was not designed to address all identified issues. Limitations in site mandates, resources, and policies constrained our ability to adapt to certain groups; for example, targeting only English-speaking populations in Quebec due to the resource constraints for linguistic and cultural adaptations in this study.

We have been collecting observations from coaches, facilitators, and workshop participants and have begun updating the program website accordingly. Once the final results are analyzed and published, the website will serve as a central platform for disseminating evidence-informed practices. Since 2015, our community of practice has grown to include over 250 individuals trained in the ACT Caring for the Caregiver programs. This network will be engaged in sharing information through the website, quarterly newsletters, and social media channels. Partner agencies, already actively involved in the project, will also contribute to dissemination efforts through presentations in their community. In addition, the findings will be presented at academic conferences and submitted for publication in peer-reviewed journals.

Our findings will not only inform future iterations of the ACT workshops but also guide best practices in scaling caregiver mental health programs, especially in virtual and hybrid formats. Understanding factors that facilitate or hinder implementation—such as populations not reached and systemic barriers to adopting the clinician-caregiver cofacilitation model—will be critical to ensuring the long-term sustainability and equitable reach of such interventions.

This study aims to offer valuable insights into the real-world implementation of a caregiver-clinician cofacilitated ACT workshop across diverse communities in Canada. Embedding the intervention within the existing community agency infrastructures and tailoring delivery to local contexts will help ensure a practical and scalable approach to address caregiver mental health. As implementation continues across various sites, we anticipate that promising practices will emerge through local adaptations, coaching, and facilitator reflections.

Given the diversity in caregiver demographics and community needs, intervention supports and delivery methods must also be adapted to meet their unique needs. We expect that equity-related gaps will surface, particularly in relation to language, accessibility, and cultural relevance. These findings will be critical in informing future iterations of the intervention to ensure that it is not only effective but also inclusive and responsive to the diverse needs of caregiver communities. Through ongoing learning and refinement, we aim to contribute to more equitable, sustainable, and community-driven models of mental health support for families of individuals with NDDs.