Background: Chronic insomnia is a highly prevalent sleep disorder that adversely affects quality of life and mental health. Cognitive behavioral therapy for insomnia (CBT-I) is internationally recommended as the first-line treatment, and digital CBT-I (dCBT-I) has been developed to improve accessibility and scalability. While existing dCBT-I systems effectively support structured behavioral training through standardized protocols, they provide relatively limited support for users’ cognitive exploration and meaning-making processes, particularly in helping users reflect on and internalize the rationale behind CBT-I practices in daily life. These limitations may contribute to challenges in sustained engagement and long-term adherence. Objective: This study aimed to examine the usability and feasibility of SleepPathfinder, a conversational CBT-I support chatbot that integrates Socratic questioning and a self-decision mechanism to support users’ understanding of and engagement with CBT-I practices. Methods: SleepPathfinder was designed around a 4-stage conversational flow: education on CBT-I techniques, Socratic cognitive exploration, self-decision, and advice provision. We conducted (1) a single-session pilot usability study (n=45) to assess system stability and user experience and (2) a 5-day condition-based comparative experiment (n=30) consisting of daily sessions, comparing an exploratory dialogue condition with a directive, protocol-guided dialogue condition. Quantitative measures assessed usability, cognitive appraisals related to sleep problems, autonomy-related experiences, and behavioral readiness, while qualitative feedback and conversational log analyses were used to examine interaction patterns and engagement characteristics. Results: In the comparative experiment, the exploratory dialogue condition showed a tendency toward reduced perceived threat and severity appraisal of sleep problems compared with the directive condition, accompanied by moderate effect sizes in cognitive perception measures. Autonomy-related experiences, including perceived choice and engagement, demonstrated suggestive upward trends in the exploratory condition. Behavioral intention changes were comparable across conditions, while overall readiness for change increased across participants. Conversational log analyses indicated that greater depth and volume of user self-narrative were associated with larger shifts in cognitive appraisals, whereas the frequency of chatbot questions alone was not. The pilot usability study indicated generally positive evaluations of system usability and content credibility, while identifying areas for improvement in emotional responsiveness and conversational naturalness. Conclusions: These findings suggest that a Socratic questioning–based and self-decision–based conversational structure is usable and feasible as a supportive interaction layer within dCBT-I systems. Rather than altering the directive behavioral structure of CBT-I, such an approach may complement existing protocols by facilitating cognitive exploration and supporting user-perceived autonomy. This study provides design-oriented evidence to inform the refinement of dialogue-supported digital CBT-I systems aimed at enhancing user engagement with CBT-I practices.
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New national action plan targets gaps at the intersection of mental health and criminal justice.
FOR IMMEDIATE RELEASE
OTTAWA, ON – The Mental Health Commission of Canada (the Commission) today released “Finding New Pathways: An action plan for criminal justice and mental health in Canada”. The plan provides an evidence-based roadmap to address systemic gaps in care, coordination, and community supports, recognizing the impact of mental health on the criminal justice system.
Many are working to improve outcomes but needs remain high and progress is uneven. This action plan is a practical pan-Canadian reference point that seeks to contribute to the mental health and wellbeing of all individuals who interact with the criminal justice and forensic mental health systems, including those who work within them.
Developed through a rigorous five-year process, the action plan was shaped by input from national subject matter experts, research, and the lived and living experiences of justice-involved individuals and system workers. The action plan comes at a critical time, as individuals experiencing mental health challenges currently comprise roughly three-quarters of all federally incarcerated people in Canada.
“Meaningful and sustainable transformation is within reach for Canada,” said Lili-Anna Pereša, President and CEO of the Mental Health Commission of Canada. “While these transformative changes cannot be implemented overnight or by one group alone, this action plan serves as a starting point. It centralizes evidence-based approaches designed to break the cycle of recidivism and prioritize prevention, diversion, end-to-end supports and continuity of care.” The action plan stands on three strategic pillars:
- Care, not criminalization: Ensuring all people in Canada have access to supports that help prevent involvement with the criminal justice system, and prioritizing diversion for those with mental illnesses.
- Care during criminal justice involvement: Providing access to high-quality, trauma-informed, and culturally safe health and social supports for those within the system.
- Care after criminal justice involvement: continuity of care and seamless integration into community-based mental health
and substance use services upon release.
“Finding New Pathways” identifies 68 specific recommendations across individual, community, institutional, systemic, and societal levels. It pays particular attention to priority populations, including people from First Nations, Inuit, and Métis, and African, Caribbean, and Black, and other equity-deserving groups who are currently overrepresented in the justice system and face distinct mental health needs.
The action plan further highlights the critical importance of supporting the psychological health and safety of workers within the criminal justice and forensic mental health systems, noting that public safety personnel are significantly more likely to experience symptoms consistent with mental disorders than the general population.
Howard Sapers, current executive director of the Canadian Civil Liberties Association, former Correctional Investigator of Canada, and project advisor for the action plan, emphasized the necessity of these reforms: “ or too long, Canada’s criminal justice system has been asked to shoulder responsibilities it was never designed to carry. The over representation of people with mental health needs in police encounters, courts, and correctional facilities is a predictable consequence of systemic gaps in care, coordination, and community supports. The Mental Health Commission of Canada’s National Action Plan offers something we have been missing for years: a coherent, evidence-based roadmap that prioritizes health, human rights, and dignity.”.
Media Contact:
For English requests, please contact Josie Sabatino at jsabatino@summa.ca; 250-649-6856.
For French requests, please contact Carlene Variyan, cvariyan@summa.ca; 613-601-7456.
About the Mental Health Commission of Canada
The Commission is a national organization committed to recognizing and contributing to a new and equitable relationship with First Peoples, with its head office located on the unceded traditional territory of the Algonquin Anishinaabe Nation in Ottawa.
As an independent, not-for-profit with charitable status, the Commission collaborates with leading experts and organizations nationally and internationally, including with people with lived and living experience, to develop national guidelines, standards and strategies, promote innovation and best practices, reduce stigma, increase mental health literacy, develop and deliver training through our Opening Minds division and support all levels of government to improve mental health outcomes for everyone living in Canada.
The post New national action plan targets gaps at the intersection of mental health and criminal justice. appeared first on Mental Health Commission of Canada.
A Comparative Study of Driving Performance Among Adolescents With Autism Spectrum Disorder and Neurotypical Adolescents
Conditions: Autism Spectrum Disorders
Interventions: Other: Assessment of executive functions and attention; Other: Evaluation on a driving simulator; Other: Evaluation on-road
Sponsors: Hopital La Musse; French Road Safety Delegation
Not yet recruiting
Interventions: Other: Assessment of executive functions and attention; Other: Evaluation on a driving simulator; Other: Evaluation on-road
Sponsors: Hopital La Musse; French Road Safety Delegation
Not yet recruiting
Tics and OCD: Why Treatments Differ and Ways to Support Your Kids
by Dr. Christine Conelea and Dr. Adrienne Manbeck
Tics, compulsions, and obsessions are part of many people’s everyday lives. As clinicians and researchers at the University of Minnesota Tic and Compulsivity Lab (MnTiC), we see people living with different, unique combinations of these symptoms that can feel interconnected. There are some broad differences between tics, obsessions, and compulsions, but it’s important to note that they do overlap and that a person can have all of these things at the same time. Still, disentangling symptoms in order to provide effective treatment can sometimes be challenging.
Tics and compulsions are similar in that they both involve movements that are repetitive and difficult for the person to control. Research has shown that overlapping genetic, neurological, and psychological factors contribute to both experiences. Because of this, some researchers and clinicians consider both tics and compulsions to be on the “obsessive-compulsive spectrum.” However, there are important differences in treatment and in how loved ones can provide support.
Behaviors
Tics are sudden, repetitive, involuntary movements or sounds that are usually very brief. Common tics include rapid or hard eye blinking, facial scrunching, throat clearing or sniffing. In our studies, we have found that people with tics have an average of 8 tics per minute.
Many individuals with tics experience an urge right before they tic. This urge can feel like tension, an itch or pressure that typically goes away after the tic occurs. Tics tend to wax and wane over time. Compulsions are often more rule bound or rigid and are driven by a thought. Common compulsions include checking, counting, washing and reordering. They tend to be longer, smooth movements or sequences of movements. They’re linked to very specific situations, triggers, or thoughts to prevent something bad from happening or to relieve anxiety. Compulsions can also be done in one’s head–like reviewing a memory or providing yourself reassurance.
Why Treatments Differ
Although tic disorders and OCD sometimes look similar on the surface (repetitive movements can occur in both), they are different disorders. Subjectively speaking, tics can feel like a “body itch” while compulsions might feel like a “brain itch.” Though they may be very connected for some people, what works for one won’t necessarily work for the other.
In general, we often take a less interventionist approach to tic disorders because tics may not be inherently harmful. On the other hand, because compulsions work to reinforce obsessive thoughts and provide escape from non-harmful but unpleasant feelings, we often intervene with OCD as soon as possible. As clinicians working with children and teens, we want to help kids learn to be brave, learn that they can tolerate distress associated with anxiety, and learn that OCD doesn’t get to make their decisions for them.
Watchful Waiting
In general, OCD will not get better on its own. If a parent notices symptoms associated with distress or impairment, taking action of some kind is often the best approach. If tics aren’t causing problems for a child, it might be best to monitor. If tics become painful, start to bother your child, or in some other way cause harm, that might be the time to pursue treatment. The American Academy of Neurology refers to this as “watchful waiting” and sees it as an appropriate treatment, in some cases, for tics.
Tips for Providing Support
People with tic disorders face high stigma and discrimination compared to the general population. Tics are often hyper-visible and poorly understood. For OCD, stigma is more likely to emerge from public messaging rather than hypervisibility. The general public talks about OCD in a highly stereotyped way that misses a lot of people’s actual experiences with OCD and can trivialize symptoms.
For both OCD and tic disorders, parents can help support their child by collaboratively developing a reward structure for hard work in therapy.
For tic disorders, research has shown that situational factors have an important role in influencing tics, including what a person is doing, who is around them, and how they are feeling. Most people can identify situational factors that make their tics better or worse. Some factors frequently associated with tic exacerbation are fatigue, social events, and starting school in the fall. Stress, frustration, or anxiety-provoking events can make it harder for the brain to inhibit tics. Events frequently reported to coincide with tic reductions include social interactions with familiar people, situations in which the individual is a passive participant or deeply focused on a task, and leisure activities.
Because tics are so reactive to situational factors, one of the best ways to provide support is to create tic-neutral environments. This means eliminating intended or unintended consequences related to the tics, such as minimizing reactions to tics or changes to activities because of tics. We frame this as, “focusing on the person instead of the tics.” Tic neutrality can also help children feel better about tics since they can’t control them.
For OCD, minimizing parent accommodation, or the things that parents do to help their kids avoid feeling anxious, can be helpful. Parents can help their kids by reducing accommodation and encouraging their children to be brave and face their fears in manageable, developmentally-appropriate ways.
About the Authors:
Christine Conelea, PhD is an Associate Professor in the Department of Psychiatry & Behavioral Sciences at the University of Minnesota, a licensed clinical psychologist, and the director of the MnTiC Lab. Dr. Conelea’s research interests include Tourette Syndrome/tic disorders, obsessive-compulsive disorder (OCD), and anxiety disorders. She is particularly interested in understanding how the brain, environment, and psychosocial factors interact to impact symptoms and treatment outcomes.
Adrienne Manbeck, PhD, is a postdoctoral fellow in the MnTiC Lab. Dr. Manbeck earned her doctorate in clinical psychology at the University of Minnesota and completed her pre-doctoral internship at Allegheny General Hospital in Pittsburgh, PA. Dr. Manbeck’s research aims to better understand the development, maintenance, and treatment of OCD and anxiety disorders across the lifespan, with a particular emphasis on the impact of societal stressors on these disorders, including the ways in which societal stressors impact symptom severity, access to high-quality treatment, and impact of treatment on symptoms.
More Reading:
Micali, N., Heyman, I., Perez, M., Hilton, K., Nakatani, E., Turner, C., & Mataix-Cols, D. (2010). Long-term outcomes of obsessive–compulsive disorder: Follow-up of 142 children and adolescents. British Journal of Psychiatry, 197(2), 128–134.
Conelea, C.A., Woods, D.W., Zinner, S.H. et al. The Impact of Tourette Syndrome in Adults: Results from the Tourette Syndrome Impact Survey. Community Ment Health J 49, 110–120 (2013).
Tourette Association of America Tourette Awareness Month resources
MnTiC Lab
Check out our research
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The post Tics and OCD: Why Treatments Differ and Ways to Support Your Kids appeared first on International OCD Foundation.
Detection of Self-Harm in Electronic Mental Health Records Using Privacy-Preserving Local Language Models: Methodological Study
Background: Self-harm is the strongest risk factor for suicide and an important outcome for mental health care. Although prevalent in clinical populations, it is often imprecisely captured in routinely collected clinical data, where it is often recorded and stored as unstructured free text. Contemporary language models, such as GPT (OpenAI) and Gemini (Google), can analyze free-text clinical notes, but such models may violate data governance of processing sensitive patient data. Objective: This study aimed to evaluate whether a privacy-preserving language model running entirely within an institution’s secure computing infrastructure (here, the UK National Health Service [NHS]) could accurately identify the presence and timing of self-harm using electronic health records from secondary mental health care. Methods: Clinical notes were drawn from Oxford Health NHS Foundation Trust using a multistage workflow: (1) a random sample of 1000 patients with a psychiatric diagnosis, defined according to the (; codes F00–F99); (2) candidate-note identification using a Gemma3-4b language model to flag notes containing self-harm content; and (3) from those candidates, 1352 randomly sampled notes were selected for expert annotation, resulting in gold-standard corpus enriched for self-harm content. Clinical notes were annotated for the presence of self-harm and its timing (≤90 days, >90 days, or unknown). A privacy-preserving locally served 27-billion-parameter Gemma 3 language model (“Gemma3-27b”) was used as the core model. Prompts were systematically developed and refined using a labeled development set to identify self-harm and generate a structured output per clinical record. Gemma3-27b performance was compared against a strong baseline multilabel text classification model based on robustly optimized BERT pretraining approach (RoBERTa), a transformer-based language model architecture. Model performance was evaluated using precision, recall, and the -score (harmonic mean of precision and recall), with 95% CIs estimated from 1000 bootstrap samples with replacement. Results: Gemma3-27b outperformed the RoBERTa classifier across all categories, achieving Precision=0.92, Recall=0.92 (sensitivity), and -score=0.92 for notes containing self-harm, and Precision=0.97, Recall=0.97 (specificity), and -score=0.97 for notes without self-harm. For the 51 notes labeled as recent self-harm in the held-out test set, Gemma3-27b achieved Precision=0.84, Recall=0.75, and -score=0.79. The global weighted -score of Gemma3-27b across all categories was 0.88, compared to 0.85 for RoBERTa. Conclusions: With systematic prompt development on a labeled development set, but no gradient-based fine-tuning, the current Gemma3-27b language model matched or exceeded a fine-tuned RoBERTa classifier for ascertaining self-harm events and their timing. Aggregate gains were modest, while improvements were largest in the most challenging, lower-frequency timing categories. On a simplified binary recent-versus-other task, RoBERTa performed marginally better, indicating that supervised classifiers remain highly effective when the task is simplified and sufficient labeled data exist. This work demonstrates the technical feasibility of privacy-preserving self-harm detection within a secure NHS research environment.
Recommendations for Research and Clinical Implementation of Ambulatory Assessment, Mood Monitoring, Digital Phenotyping, and Remote Measurement Technology in Mood Disorders: Synthesis of Systematic Review Findings
Background: Ambulatory assessment and active and passive monitoring all offer a real-time, flexible approach to assessing mood and behavior in mood disorders. Despite their potential, concerns remain regarding the performance, usability, adherence, and potential safety of these tools. Objective: This study synthesizes the findings from 7 systematic reviews, integrating quantitative and qualitative data from randomized trials, observational studies, and user experience research to evaluate the performance, feasibility, acceptability, and clinical impact of ambulatory assessment and mood monitoring in people with depression and bipolar disorder. We assessed studies over the medium or long term (3 months or more). Methods: A summary of a series of systematic reviews was carried out by the authors—including meta-analyses (for quantitative data) and meta-syntheses (for qualitative data). Eight electronic databases were searched, and mixed methods studies were included. Studies were assessed for risk of bias. The results were checked for coherence, and recommendations were made by individuals with lived experience, methodologists, and psychiatrists. GRADE (Grading of Recommendations Assessment, Development, and Evaluation) was used to assess the quality and strength of the evidence. Results: The 111 included studies included 19,945 participants and used 69 different ambulatory assessment protocols or mood-monitoring interventions. Key barriers to implementation were identified, including performance inconsistency, adverse effects, and user disengagement. Evidence-based recommendations are provided to guide future clinical and research applications. Conclusions: Ambulatory assessment and mood monitoring hold promise in research and clinical practice, yet their implementation requires more rigorous evaluation, greater personalization, and responsible, user-centered design. Crucially, these measures can add granularity and confirmation, but additional context is often required, and none of these measures are robust enough yet to replace current outcomes.
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Negative Online Experiences Are Common but Often Go Unreported Among Youth With Mental Health and Neurodevelopmental Concerns
New Child Mind Institute study finds more than one in four youth experienced a negative online experience in the past year, yet only one in five reported the incident through platform tools.
New York, NY — A new study from researchers at the Child Mind Institute finds that negative online experiences are common among children and adolescents with mental health and neurodevelopmental conditions, and that most incidents are not reported through platform reporting tools.
Published in JAACAP Open, the study examined negative online experiences among 1,009 youth ages 9 to 15 with a history of mental health or neurodevelopmental concerns, all of whom were current or previous participants in the Child Mind Institute’s Healthy Brain Network. More than one in four reported at least one negative online experience in the past year. Among those who had such an experience, nearly 69% reported multiple incidents, yet only 20% reported the incident through platform reporting tools.
The study defined “negative online experience” as any unwanted or uncomfortable experience while online, including cyberbullying, cyberstalking, doxxing, impersonation, sexual harassment, and related forms of digital harm. The research used a mixed-methods design, combining a quantitative survey with an in-depth qualitative follow-up involving a three-day moderated online bulletin board with a subset of participants.
“These findings point to a large and often hidden problem,” said Michael P. Milham, MD, PhD, Chief Science Officer at the Child Mind Institute and senior author of the study. “Many young people are encountering harmful or uncomfortable experiences online, but the systems designed to help them often do not receive a report. That creates a major gap for parents, educators, clinicians, and platforms trying to keep children safer online.”
The research team identified three major categories of barriers that prevent youth from reporting negative online experiences: reporting process barriers, such as not knowing how to make a report; reporting policy barriers, including uncertainty about what qualifies for reporting or how platform rules apply; and emotional barriers, such as embarrassment, fear, and worry about consequences.
The study also found that reporting decisions were often shaped by how young people interpreted the incident itself. In the qualitative follow-up, youth considered whether the harmful behavior seemed intentional, how malicious it appeared, and how severe or repeated the harassment was. When those cues were ambiguous, youth were less certain about whether reporting was appropriate.
“Reporting is not simply a matter of telling young people to speak up,” said Mirelle Kass, lead author of the study. “Youth are making complicated judgments about intent, severity, platform rules, and the possible consequences of disclosure. If we want young people to report harmful experiences, the tools and systems around them need to be clearer, safer, and easier to use.”
The findings suggest that online safety efforts should be tailored to the needs of youth who may already be managing mental health, developmental, or social challenges. Social aptitude, mental health symptoms, and parenting style were associated with youths’ likelihood of encountering negative online experiences and with the barriers they faced when deciding whether to report them.
Participants also expressed a clear desire for better tools and guidance. Most youth wanted platforms to provide more information about how to protect themselves online, how to use safety features such as blocking and reporting, and how to access support during and after the reporting process.
“Families, educators, clinicians, policymakers, and technology developers all have a role to play,” said Dr. Milham. “We need reporting systems that children can understand, policies that are transparent, and trusted adults who can respond without blame or overreaction. Safer digital spaces will require more than awareness. They will require systems designed around how young people actually experience online harm.”
The study underscores the importance of developmentally appropriate safety tools, clearer platform policies, and stronger support systems for youth navigating digital spaces. For children and adolescents with mental health and neurodevelopmental conditions, improving reporting pathways may be an important step toward reducing hidden online harms and building safer online environments.
This research was supported by funding from Google LLC’s User Safety team to the Child Mind Institute for work led by Michael P. Milham, MD, PhD.
About the Healthy Brain Network
The Healthy Brain Network is a community-centered research initiative from the Child Mind Institute that collects clinical, cognitive, behavioral, and neurobiological data from children and adolescents in the New York City area. Families who participate receive feedback and diagnostic consultation while contributing to open science research aimed at improving understanding of child and adolescent mental health.
About the Child Mind Institute
The Child Mind Institute is an independent nonprofit organization dedicated to transforming the lives of children and families struggling with mental health and learning disorders. Through cutting-edge research, evidence-based clinical care, and public education, the Child Mind Institute builds open science platforms and digital tools to accelerate discovery and improve youth mental health worldwide.
For press questions, contact cmiscience@ssmandl.com or mediaoffice@childmind.org.
The post Negative Online Experiences Are Common but Often Go Unreported Among Youth With Mental Health and Neurodevelopmental Concerns appeared first on Child Mind Institute.
JAACAP Open: Negative Online Experiences and Reporting Rates in Youth With Mental Health Conditions
Centering People, Centering Stories: Folklore as an Unlikely Ally in the OCD Misdiagnosis Crisis
By: Rebecca Bernstein, MA Folklore
The International OCD Foundation’s (IOCDF) recent landmark white paper reveals more than 80% of OCD cases in America remain undiagnosed (International OCD Foundation, 2025). Considering the size of this clinical challenge, it might seem odd to suggest that a small, humanities-based field like folklore— yes, folklore — has any role to play in the solution. As someone who studies OCD personal narratives (stories people tell about their lived experiences), my research suggests otherwise. In a situation that invokes the feeling of all-hands-on-deck, the tools and perspectives of this field may offer more benefit than we might initially give it credit for.
Folklore is the study of informal, creative communication. Dr. Lynn McNeill describes it as anything people “say, do, make, or believe” (McNeill, 2013). Folklore includes everything you’d think of (quilts, traditional music, fairy tales) and a lot of things you wouldn’t (occupational culture, gossip, internet memes.) We find examples of folklore everywhere. It’s in our holidays and our hobbies, our food and our fads, our jokes and our grieving. Folklorists study the infinite ways people express themselves in daily life. This, in turn, helps us better understand the cultural realities in which they live. And because what we “say, do, make, or believe” describes most of human behavior, the folkloric lens can be an indispensable one with which to investigate the world.
The benefit of studying how people express themselves is obvious when we recognize that in mental health, conversation and narrative are the primary tools we use to give and receive care. OCD isn’t just a diagnosis. It’s also a fundamentally creative experience. (Creative things don’t necessarily have to be beautiful, pleasing, or even wanted. They just have to be new and meaningful.) (Dictionary.com, 2023). Although ego-dystonic, extraordinary beliefs and elaborate rituals are hallmark features of OCD. When sufferers discuss their experiences, they are naturally inclined to do so through their own personal and cultural lenses. Therefore, descriptions of OCD vary infinitely. If the issue is our failure to recognize OCD when it presents itself, an approach designed to make sense of something as messy as human expression may offer insights that quantitative research methods still struggle to obtain.
How Folklorists Research
Just like in biomedical research, the research methods folklorists use matter. Our goal is to better understand people and their communities. That means we strategically build relationships, listen deeply, and intentionally embrace the complexity of those we talk to.
When I started researching OCD narratives, I wanted to know: What were the internal realities like for people who lived with this illness? What made their stories distinct? And how might those stories be connected? One of the biggest challenges I faced in my fieldwork was the potential for my participants to self-censor. As someone who also lives with OCD, I knew all too well the role shame and fear could play in the choice to fully share one’s reality with others. Using both field-tested approaches and my own lived knowledge, I conducted interviews with people with OCD, approaching them in a way I hoped would ease interviewees into difficult conversations:
- I provided anonymity. I held all interviews on Zoom, where participants were free to keep their cameras off. I also assigned each one an alphanumeric signifier (A1, B2, etc.) in my writing.
- I emphasized the importance of story. Although I asked specific questions, I also allowed participants to go off topic and engage in two-way conversation. The story was the point.
- I used the “kitchen table” interview method. Based on the work of Carl Lindahl, this method tries to recreate the intimacy of two individuals talking around a kitchen table. It discourages framing the interviewer as an objective party, recognizes storytellers as experts in their own experiences, and suggests that interviewers only ask questions they themselves would be willing to answer (Lindahl, 2012).
- I disclosed. My choice to openly discuss my own OCD diagnosis with interviewees allowed conversations to proceed with a certain warmth and vulnerability.
- I emphasized participants’ humanity. I treated each participant as a full individual rather than just a source of information. This meant I worked on a model of enthusiastic consent. It also meant I asked them for feedback on my writing to ensure I portrayed their experiences accurately.
- I compensated participants well. Each received a $100 gift card.
The Results
The universal theme I discovered during these interviews was a profound concern with social isolation. Every single participant mentioned this issue. Interviewees shared how OCD made it difficult for them to maintain relationships and how challenging it was to hide their illness from others. They also recalled their joy and gratitude when discussing moments in which they felt understood.
Their narratives also contained four other common themes:
1.) Logic and patterns of personal concern. Participants often discussed their particular obsessions and compulsions, and the influence those specific thoughts and behaviors had on their daily lives.
2.) Issues of negotiation. People talked about navigating certain types of conflicts as a result of their illness. These conflicts generally fell into two categories: self-negotiation and existential negotiation. In the first, people struggled with the desire to take their thoughts and urges seriously despite knowing they didn’t make sense. In the second, they wrestled with their relationships to the divine.
3.) Positive approaches to the illness. Many interviewees made a point to mention the silver linings they saw in being sick. They noted how OCD made them safer, more empathetic, or provided them with particular skills. Others discussed productive choices they’d made despite living with such a debilitating condition.
4.) Interactions with medical systems. Participants talked about their experiences as patients. For some, dealing with doctors, therapists, and other health professionals helped them understand their experience or relieved their suffering. For others, these encounters were confusing, unhelpful, or even traumatizing.
It’s important to note these themes represent a truly broad range of content. Not every story included every theme, and within those themes, the specific details I heard varied as much as the individuals themselves.
Implications
Say you were to hear four stories: one about someone’s preferred cleaning routine, one about someone’s waning belief in God, one about a good decision made in a difficult circumstance, and one about a doctor’s visit. It’s unlikely you’d consider these stories connected. And yet the data shows they are. The fact that stories with dramatically different content can reflect the same illness highlights the way OCD can remain elusive and camouflaged.
The problem with recognizing these stories as OCD stories isn’t just the variation in content. It’s also in how others hear them. In folklore, we don’t just study cultural expressions. We also study how they move from person to person. “Tellable narratives” travel easily. Both speakers and listeners understand what a certain type of story should sound like and the meaning it’s supposed to convey. If I tell you a tale about a persecuted young woman who escapes a bad home life and marries a prince, you can probably guess you’ve heard Cinderella. If we’re both excited that she went from rags to riches, we share an understanding that her journey is a positive one. In contrast, an “untellable narrative” hits some kind of barrier. If you’ve never heard Cinderella before or think the stepmother is actually the hero, my meaning in telling you the story gets lost. Untellable narratives can be misinterpreted.
This misalignment between the stories people tell and the ones listeners expect to hear happens all the time. We’ve all said things misunderstood by others. Sometimes this process is harmless; other times it results in difficult consequences. Dr. Kristiana Willsey writes about veterans who censor themselves in front of civilian audiences. Because civilians usually only expect to hear tales of “war heroes” or “PTSD survivors,” veterans often choose not to tell the full and complicated stories of their service experiences (Willsey, 2015). Dr. Amy Shuman and Carol Bohmer discuss the case of rejected asylum seekers. If asylum applicants don’t tell their stories of oppression and escape in a way that fits immigration officials’ expectations of what a traumatic asylum story should look like, their applications get denied (Shuman & Bohmer, 2016). If we consider just how different any two OCD stories can be and add the public assumption that OCD is an illness of specific doings (hand washing, checking locks) rather than tellings, it highlights just how difficult it is for most of these narratives to get heard, and heard correctly.
Patient/practitioner interactions can be particularly vulnerable to this type of miscommunication. The problem with considering OCD as just a medical issue is that most people don’t think of their lives as medical events. Practitioners enter the room ready to make sense of problems in clinical terms. Patients enter with stories. They share their concerns in a way that cannot be easily separated from their personal frames of reference or cultural understandings of life. Practitioners are often taught to mistrust the details that emerge from these narratives, to kindly but efficiently work around them in order to do their jobs. But for patients, these details are how they make meaning. If misdiagnoses also occur during these interactions, it’s worth taking a closer look at what’s being lost in translation.
Folklore ultimately offers the promise of new solutions to old problems. It allows us to reconsider how we listen to patients, collect data, and address communication issues— all clear benefits in the fight for better diagnostic care. It is also equipped to help us make sense out of the lived reality of OCD— perhaps uniquely so. I see folklore as an exciting potential ally to traditional research and clinical spaces. My hope is that this partnership can help us work more effectively toward our common goals: a better understanding of OCD, and quicker ease for its sufferers.
Works Cited
Dictionary.com. (2023). Creativity. In Random House Unabridged Dictionary. Random House, Inc. https://www.dictionary.com/browse/creativity.
International OCD Foundation. (2025). America’s OCD care crisis: National findings on the failure of effective OCD treatment to research patients. International OCD Foundation. https://iocdf.org/wp-content/uploads/2025/12/Full-Report-Americas-OCD-Care-Crisis-12-9-2025.pdf.
Lindahl, C. (2012). Legends of Hurricane Katrina: The right to be wrong, survivor-to- survivor storytelling, and healing. The Journal of American Folklore, 125 (496), 139–176. https://doi.org/10.5406/jamerfolk.125.496.0139.
McNeill, L. (2013). Folklore rules: A fun, quick, and useful introduction to the field of academic folklore studies. Utah State University Press. https://muse.jhu.edu/book/27822.
Shuman, A. & Bohmer, C. (2016). The stigmatized vernacular: Political asylum and the politics of visibility/recognition. In D. Goldstein & A. Shuman (Eds.), The stigmatized vernacular: Where reflexivity meets untellability. Indiana University Press.
Willsey, K. (2015). Falling out of performance: Pragmatic breakdown in veterans’ storytelling. In T.J. Blank & A. Kitta (Eds.), Diagnosing folklore: Perspectives on disability, health and trauma. University Press of Mississippi.
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BrainBaseline Assessment of Cognition and Everyday Functioning (“BRACE”-ing for the Future): Establishing iPad-Based Norms for Cognitive Function in the Multicenter AIDS Cohort Study and Women’s Interagency HIV Study Combined Cohort Study
Background: Digital cognitive assessments are increasingly used in large-scale studies to assess brain health, offering scalable, standardized, and self-directed testing solutions. Cognitive function remains a concern for people with HIV despite antiretroviral therapy. The BRACE (BrainBaseline Assessment of Cognition and Everyday Functioning) is a validated tablet-based screener for cognition in people with HIV. Preliminary pilot norms were established in a small sample (n=144), but full regression-based normative data have not yet been developed. Consequently, HIV serostatus differences based on standardized BRACE scores and cognitive correlates have not been systematically examined. Objective: This study aims to develop regression-based normative data for BRACE performance in people without HIV who were demographically and behaviorally comparable to people with HIV within biological sex; to examine differences in cognitive performance by HIV status and biological sex; and to evaluate sociodemographic, behavioral, and clinical correlates of BRACE performance. Methods: A total of 2937 participants (1063 people without HIV [499 women] and 1874 people with HIV [1053 women]) in the Multicenter AIDS Cohort Study/Women’s Interagency HIV Study Combined Cohort Study completed BRACE once between November 2020 and March 2025. BRACE includes the Trail Making Test (A and B), Stroop-Color, and visual spatial learning. Regression-based norms were derived from people without HIV using multiple demographic models (eg, age-only, age + education, and age + education + sex). The age + education model was selected for primary analyses because it provided the best balance of interpretability, parsimony, and generalizability while avoiding race-based corrections. HIV serostatus and sex differences were examined using ANOVA and tests, with effect sizes calculated using Cohen’s . Results: Cognitive performance was largely comparable between people with HIV and people without HIV across all BRACE outcome measures. Statistically significant differences were very small in magnitude (all effect sizes<0.11) and primarily observed among men on Stroop-Color. Across groups, older age and fewer years of education were associated with poorer raw BRACE performance, although these associations attenuated after demographic adjustment using T-scores. Most clinical and behavioral factors (eg, hypertension, smoking, and noncannabis substance use) were related to poorer raw scores but not standardized performance. However, diabetes and cannabis use remained independently associated with T-scores across multiple measures—diabetes with poorer scores and cannabis use with higher scores, an association that should be interpreted cautiously. HIV-specific clinical factors, such as nadir CD4 count and antiretroviral therapy duration, were linked primarily to raw scores. Conclusions: This study establishes the first regression-based normative data for BRACE, derived from a large, demographically diverse people without HIV, and demonstrates its applicability for evaluating cognitive function in people with HIV. Findings indicate minimal cognitive differences between people with HIV and people without HIV and highlight the influence of common sociodemographic and metabolic factors. These results support BRACE as a scalable, reliable, and self-administered digital tool for assessing cognitive health in diverse populations and underscore its potential for longitudinal monitoring and precision phenotyping in both research and clinical contexts.
