Abstract
This patient perspectives manuscript presents caregiver reflections about a virtual peer support program conceptualized, designed, and facilitated by and for caregivers of neurodivergent adults with co-occurring mental health concerns. Grounded in lived experience, the model intentionally departs from solution-focused or prescriptive approaches, emphasizing holding space for emotions and realities that cannot necessarily be resolved. We describe how Coffee Chats emerged from caregivers’ prior experiences with existing supports and outline the defining elements that distinguish this model from other contemporary caregiver peer support approaches. The Coffee Chats model highlights the value of caregiver-designed, flexible, and relational peer support grounded in authenticity, humility, and shared understanding.
Keywords
Introduction
The mental health benefits of peer support are well-documented, with established models highlighting the advantages of shared experiences, learning, connection, and community. However, caregivers’ experiences of peer support are not uniform, and program design significantly shapes perceived relevance and safety. 1 This article focuses on a specific, caregiver-designed virtual peer support program for caregivers of neurodivergent adults, created by caregivers using their experiences to address their specific needs. Rather than surveying the broader peer support literature, we center on caregiver perspectives that shaped this model and the elements caregivers identified as essential to feeling safe, validated, and genuinely supported.
Neurodivergence refers to cognitive processing styles that differ from what is considered typical and can include conditions such as Autism, Attention Deficit/Hyperactivity Disorder, learning disabilities or intellectual disabilities. There is a strong correlation between neurodivergent conditions and the prevalence of mental health issues and barriers in accessing appropriate supports and services. 2 This not only presents challenges to people with these conditions, but also to the people caring for or supporting them. These caregivers often experience marginalization, exclusion, and trauma while navigating fragmented health and disability-related systems.3,4 This is exacerbated by the biases and stigmas within these systems, as well as a lack of understanding about neurodivergent complexities among professionals. The specific care needs of caregivers’ family members complicate experiences 5 ; some caregivers need to respond to alarming and sometimes urgent circumstances, including suicidality, risk of exploitation, and substance use, while balancing how to support their loved ones’ autonomy. These caregivers often act in isolation from sources of interpersonal support, and unresolved crises of care can create a prevailing and heightened state of crisis, unease, and a sense of limits to agency. The physical and emotional toll of caregiving can lead to demoralization, a sense of incompetence, burnout, hopelessness, and uncertainty for the future. 6
Support programs for family caregivers have the potential to mitigate some of these burdens; however, the caregivers involved in developing Coffee Chats reported that many available supports did not fully reflect their lived realities. This article, therefore, aims to describe how Coffee Chats was shaped by caregivers’ lived experiences and outlines what distinguishes this program from other caregiver support approaches.
Practical Perspectives
The impetus for Coffee Chats arose from three caregivers with varying experiences and personal circumstances supporting neurodivergent adult children with multiple co-occurring conditions. Our reflections are not intended as universal claims about peer support programs; rather, they represent how our own experiences shaped the design of a peer support program and addressed unmet support needs.
As caregivers, we shared experiences of emotional burden, ongoing exposure to our loved ones’ suffering, and the paradox of being perceived simultaneously as “hero and villain” by those we supported. Long wait lists, service exclusions, and prior negative encounters with professionals compounded these experiences. Caregiving demands also limited our ability to maintain friendships or participate in community life.
As noted in a recent review 7 and other related studies, 8 caregiver “peer support” encompasses a heterogeneous set of principles and models that vary in facilitation style, philosophy, and emphasis. For example, some of the peer support spaces and programs we encountered for caregivers emphasized strategies, reframing, or problem-solving. While these approaches may be helpful in some contexts, they often feel misaligned with situations that are ongoing, systemic, or morally complex. 9 Messages framed around “self-care,” or “staying positive,” were sometimes experienced as minimizing trauma or implying personal failure, rather than acknowledging the structural and relational realities shaping our distress. As a result, some of us felt reluctant to share emotions such as resentment, regret, hatred, or suicidal thoughts for fear of judgment or invalidation, further adding to our sense of discomfort and loneliness.
We also noted that the virtual environments, while increasing access, sometimes unintentionally amplified exclusion, particularly when our intersectional identities or communication styles were misunderstood, dismissed, or invalidated, hindering genuine sharing or reflection. We recognized that the brief interactions in group settings limited our ability to convey crucial context, reduced emotional nuance, and increased the risk of being misunderstood. These experiences led us to ask a different question: What would peer support look like if it were designed explicitly around caregivers’ lived realities, rather than trying to fix or improve them? What would it be like if we were sitting around having coffee, chatting with other people who understood our perspectives and experiences?
Developing and Designing the Program
Coffee Chats was designed by caregivers, for caregivers, with clinical support embedded rather than positioned as the primary authority. Consistent with participatory and co-design literature, 10 caregivers were positioned as knowledge holders whose experiential expertise shaped both the structure and tone of the program.
Caregiver-Led Program Design
Over 6 months, 3 caregivers formed a working group to develop the Coffee Chats program. As part of this development, the working group participated in peer support training and held separate, weekly meetings with one another to articulate as a group what was missing from existing caregiver support. The group then met biweekly with clinicians to explore together how to move their ideas into the development and implementation of a peer support program. Rather than adapting a pre-existing manualized model, the caregiver working group identified core concepts directly from lived experience and co-developed 6 themed sessions about the mental health of their Autistic adult loved ones, with an additional reunion follow-up session to occur 1 month after the 6th session. After 3 initial cycles of the series and in the spirit of inclusivity, the program was opened to caregivers of neurodivergent adult loved ones more broadly (see Table 1: Coffee Chats Program Outline).
Coffee Chats Program Outline.
Defining Features
Several elements distinguish Coffee Chats from other peer support approaches:
Holding Space as a Core Practice: Participants are encouraged to prioritize listening and emotional presence over advice-giving or solution-finding. This reflects caregivers’ desire for validation rather than problem-solving in peer contexts. Brave Space: Group norms emphasized honesty, emotional risk, and respect for difference rather than positivity or consensus. This allowed participants to voice taboo or ambivalent feelings without fear of correction, fostering authenticity and empathy. Flexible Virtual Engagement: Participants could engage with cameras off, contribute via chat only, or simply listen, reflecting personal capacity and caregiving situations. This flexibility was intentionally framed as legitimate participation, not disengagement. Intersectional Awareness: Encouragement of explicit self-reflection of how race, gender, sexuality, disability, class, and caregiver-care recipient relationships shape experiences rather than assuming a single caregiver narrative. Grounding and Reframing: Inclusion of in-the-moment exercises to manage real-time emotions, potentially traumatic memories, and strategies to shift focus towards what caregivers can control, promoting empowerment and resilience rather than helplessness.
Team-Based Support and Debriefing
Each session was supported by a broad team including caregiver facilitators, an engagement worker, a clinician available for immediate intervention if needed (off-camera), and administrative support. For the first 3 iterations, a peer support coach was also available as we developed our facilitation skills. Postsession debriefs with the engagement worker and clinician were also a central component of the model. These debriefs allowed facilitators to process emotional impact, reflect on group dynamics, and adjust facilitation approaches in real time. For example, feedback from early cycles led to slower pacing, more explicit permission for silence, and clearer framing of emotional safety.
Practice-Based Recommendations
Based on our experience developing and delivering Coffee Chats, we offer the following recommendations for supporting caregiver-designed and led peer support initiatives:
Conclusion
The Coffee Chats program demonstrates how caregiver-designed and led peer support can create spaces that feel authentic, non-judgmental, and responsive to complex caregiving realities. By centering lived experience, emphasizing holding space, and embedding flexibility and humility, this model offers an alternative to more prescriptive caregiver support approaches. Our experience suggests that when caregivers shape both the form and function of peer support, the support is not only more meaningful and effective, but also creates a community grounded in mutual recognition and care.
This article is intended to describe a practice-based caregiver peer support program grounded in lived experience rather than to evaluate outcomes or effectiveness. In a similar fashion, our next steps involve working together to evaluate preliminary efficacy, program feasibility, acceptability, and further integration of feedback to refine the model. Future research will explore scalability, long-term impacts, and broader implementation strategies.
Footnotes
Acknowledgments
The authors gratefully acknowledge the support of the Patient and Family Learning Space (Jana Vigor, Alexxa Abi-Jaoude) and the Collaborative Learning College at CAMH (Sam Gruszecki), as well as the clinical support of staff and trainees (Teresa Kelly, Yousef Safar, Hadas Dahary, Erin Matsuba) in developing and supporting this program. They also thank Coffee Chat participants for their openness, vulnerability, and willingness to share their stories.
Declaration of Conflict of Interest
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding from the Public Health Agency of Canada and the Azrieli Foundation helped fund the development of this program. The opinions, results, views, and conclusions reported are those of the authors and are independent of the funding sources.
Patient or Public Contribution
Caregivers with lived experience developed and designed the Coffee Chats program, facilitated the program, trained other facilitators, and were the primary authors of this paper.
Statement of Informed Consent (Submitted as Patient Perspectives)
This manuscript was developed and written by caregivers (“patients”) about their experiences; thus as authors, consent was not required.