Book Clubs for Mental Health
Role: Principal Investigator
Status: In development
Funding Sources: N/A
THE BIG PICTURE:
Common mental health struggles such as depression are woefully undertreated in the U.S.
Undertreated mental health issues come at an extraordinary cost to individuals and society.
A major cause of undertreatment is inadequate access to care or limited use of conventional therapy when it's actually available.
Use of evidence-based self-help books offers a promising way to address the care access/use problem, but several limitations reduce its potential impact.
We are developing a scalable social book club program to overcome existing limitations and bring needed symptom relief to those in need.
NOTE. This intervention development project is still in the early stages, but for anyone curious about my evolving approach to intervention development, I've included more detail here than usual. Also please note that this isn't an exact science and methods shared here are not intended to be prescriptive.
Depression is one of the most common and undertreated health problems among U.S. adults. The U.S. is among global leaders in depression with more than 21 million adults—a little over 8% of the population—having at least one major depressive episode in 2020 (NIMH), and many more experiencing less severe mild-to-moderate symptoms. Depression in the U.S. and globally has been severely undertreated despite the availability of effective therapies (check out this alarming 2017 study). Depression is profoundly burdensome, as it is associated with increased morbidity and mortality, poor prognosis, and increased healthcare utilization.
Insufficient access to treatment is a major contributor to the depression crisis. While several treatment barriers have been described, a key problem underlying the mental health crisis in America appears to be a lack of access to care, where demand for treatment significantly outpaces supply in the mental health workforce. There is currently an estimated shortage of 10,000–20,000 psychiatrists in the U.S., with only 25% of primary care practices having onsite mental health specialists of any sort (for discussion, see Mongelli et al, 2020). Two-thirds of primary care physicians cannot obtain outpatient mental health services for patients who need them (Cunningham, 2009). These ubiquitous shortages where “nobody has openings” directly lead to long waiting times for care-seeking individuals—wait times that last as long as 93 days in some studies—and serious complications from delayed care.
Bibliotherapy increases treatment access, but several limitations restrict its dissemination. Use of a therapeutic book/workbook (bibliotherapy) offers several advantages as a complimentary self-help treatment (e.g., high acceptability, low cost); its greatest appeal from a clinical care perspective is its ability to provide easy access to evidence-based psychotherapy, a first-line treatment recommendation for depression in clinical practice guidelines. Despite increasing access to psychotherapy, we have identified two key areas of weakness that limit its utility:
Sub-optimal environment for learning and applying therapeutic concepts
Absence of socially-rewarding activities known to be effective in reducing depression
OBJECTIVE: The major objective of this project is to develop, refine, and pilot a novel group bibliotherapy intervention: Book-based Stress Management And Resilience Training (BookSMART). Our long-term goal is to develop a flexible, scalable, and effective intervention that adults managing distress will enjoy, use, and benefit from. If this innovative intervention model is successful, it could address a critical unmet care need.
Development of an Innovative Book Club Program for Depression
In this project, we will develop, refine, and pilot a novel mindfulness-based group bibliotherapy intervention, Book-based Stress Management And Resilience Training (BookSMART), that is tailored for adults with depression. BookSMART is an innovative interventional model, as it merges features of conventional bibliotherapy with the highly popular book club phenomenon in the U.S. The long-term goal is to better address the U.S. depression crisis through improved dissemination of effective treatments, including mindfulness-based psychotherapies such as Acceptance and Commitment Therapy (ACT).
To develop and refine the BookSMART protocol, will follow published guidelines grounded in the Participatory Action Research (PAR) methodology for adapting treatments in a rigorous, step-wise process.
STEP 1. Choose a base intervention for adaptation. After identifying the population’s key clinical needs (general: increased access to effective evidence-based psychotherapy for depression; specific: bibliotherapeutic innovation that overcomes known limitations), the intervention developer should consider the starting intervention’s stage of research development and evaluation and consider mechanisms of action for compatibility and suitability for the target population.
Workbook Selection (to be adapted for use in book club): We selected, “The Mindfulness & Acceptance Workbook for Depression” as the self-help book for inclusion in the current pilot. This book was developed by key influencers in the field of ACT—co-authored by Kirk Strosahl and Patricia Robinson with foreword from Steven Hayes—and has won the “Self-Help Merit Award” from the Association for Behavioral and Cognitive Therapy at the 2010 annual conference in San Francisco, CA. Within the ACT framework, this workbook is designed specifically for practical use by patients interested in self-help for depression. The workbook incorporates several ACT-based activities such as structured mindfulness exercises, defusion exercises (e.g., thoughts on cards and “I’m having the thought that …”) and values clarification exercises (e.g., tombstone exercise, values directions worksheet, life compass). The workbook provides extensive supplemental materials (e.g., audio recordings of experiential exercises, self-assessment forms and worksheets, etc.) as well as a practical curriculum for psychoeducational classes and a class session guide, which we have adapted for the book club enhancement.
Why the peer support model could be an impactful addition to ACT Bibliotherapy for depression. Peer support is provided and received by those who share similar life experiences. The goal is to build mutually supportive and compassionate relationships among equals, share knowledge and information, and work toward progress in meeting goals.
Shared experiences: increase trust and create a supportive environment where knowledge, coping mechanisms, validation, and recovering strategies can be shared.
Flexibility: Members will value different aspects of peer support groups for different reasons, and so there does not need to be a perfect one-size-fits-all approach to provide benefit.
Comfort: Attendance for group sessions is enhanced when people feel comfortable within their peer group, and those who participate in these groups tend to have positive outcomes at a greater frequency.
Initial BookSMART protocol. Overview: With the goal of having concrete materials and concepts that can be constructively discussed with stakeholders in STEP 2, we devised a working protocol based on established literature and a psychoeducational curriculum provided by the workbook’s authors.
General Features of the Intervention. Most initial program features are subject to change based on direct and observed feedback from group.
Frequency, Duration and location: Subjects will attend weekly, 60 minute, in-person meetings at public libraries for a duration of 8 weeks.
Content: Content covered in book club meetings over the intervention period will cover all essential ACT concepts and readings within the workbook (see table below). Each book club meeting will correspond to the individually assigned readings prior to attendance for that week and will roughly follow the workbook’s included psychoeducational curriculum.
Location: As this intervention is being developed with the goal of dissemination in mind, Book club meetings will be planned to be held in public spaces/community settings that are traditionally open to the public for group meetings (e.g., public libraries).
Communication: Meeting times and locations (influenced by focus group feedback) will be communicated utilizing automated SMS and email. During each meeting, select passages from the assigned weekly readings will be read and discussed and specific exercises relevant to each week’s reading assignment will be used. Group members will take turns facilitating discussion to encourage group-wide participation. A friendly, encouraging/supportive environment will be promoted with opportunities for socializing. At the end of each session, participants will have the opportunity to complete acceptability evaluations (e.g., liking ratings, open-ended feedback) to inform intervention refinement and enhance the user experience.
Peer Facilitation. To promote sustainability of the intervention in real world settings and building on a cooperative concept of learning, group members will be encouraged to take turns fulfilling the role of facilitator throughout each book club session, much like a traditional book club might operate. Generally, peer facilitators will be responsible for initiating and sustaining (when necessary) discussion surrounding weekly assigned readings and reading scripts or taking actions related to planned group activities derived from the workbook.
STEP 2. Conduct focus groups with the target population (and others). We will conduct focus groups with the target population to obtain feedback about the proposed content and structure of the intervention, perceived need and barriers to participation, suggestions for improvement, etc. It is also advisable to get feedback from content area experts (see STEP 6 for details) and additional stakeholders early in this process as well.
STEP 3. Make initial protocol revisions. Transcribed text from the focus groups will be divided into meaning units, followed by the development of a code book and coding of the text. This will lead to the development of content themes that our study team will review and then discuss to identify intervention revision targets.
STEP 4. Pilot initial intervention revisions. During this step, we will pilot the initial stakeholder-informed revisions to the protocol among the target population over several weeks (no control group). The primary goal of the initial pilot is to gather structured and meaningful feedback about several important components of the draft protocol. At the end of each session, research staff will conduct knowledge checks of participants to gauge how well they are retaining the information covered in that day’s meeting (i.e., quizzes created by the research team and completed by participants that cover content specific to that meeting’s content). Average group scores >70% will be considered adequate comprehension.
During each meeting, research staff will also complete content checklists specific to each meeting’s agenda for the day to help evaluate whether changes will need to be made related to meeting duration or amount of content covered. If >80% of planned content (agenda) is covered within a session, implementation will be considered successful. Participant feedback related to acceptability and feasibility of the intervention will be assessed. At the end of each week, the study team will review and discuss the themes of the participant feedback and make adjustments to the study protocol prior to the next session. This iterative process will facilitate rapid improvement to the protocol from both a peer-facilitator and peer-participant perspective from week to week.
STEP 5. Conduct 1:1 peer facilitator interviews. Semi-structured interviews will be conducted 1:1 among a sample of pilot participants that previously led group sessions. It is sometimes advised to gain additional facilitator feedback at this stage of development, as critics of manual-based interventions frequently cite difficulty that facilitators with different backgrounds have implementing them. A copy of session materials will be provided as a reminder of session flow, instructions, and activities. Interviewees will be asked to provide feedback about the overall structure and content, ease of use and readability of the manual, and acceptability of the manual.
STEP 6. Acquire expert review of the revised manual. A panel of experts with experience and interest in depression or those with relevant backgrounds to the intervention will be provided a copy of the second manual draft for review. The panel will be asked to review the full manual, providing feedback on overall structure, therapeutic content, anticipated feasibility for clients, overall structure of the individual sessions, content of the individual sessions, and predicted outcomes. Open-ended and highly structured feedback will be sought. Targeted panel expertise will include: scientific development implementation of manualized treatment, mindfulness research and clinical expertise, a mental health clinician with experience delivering manualized interventions, and relevant community stakeholders (e.g., library administrators).
STEP 7. Incorporate staff and expert feedback. Focus group and interview feedback from STEPS 5-6 will then be evaluated by the full team. Generally, concerns or suggestions raised by two or more experts or patient stakeholders will be strongly considered for incorporation. Completion of STEPS 1-7 will then lead to a finalized intervention manual for BookSMART that is ready for testing in a pilot RCT in STEP 8.
STEP 8. Conduct a pilot randomized controlled trial of the revised manual-based intervention.
Condition A: BookSMART (8 weeks). The manualized intervention rigorously developed in previous steps.
Condition B: Book alone (8 weeks). Participants will engage in the same assessments as BookSMART participants, but will only have access to the workbook (no access to club).
This design will help clarify benefits of the book club approach above and beyond what people would normally get through book use by itself.
Next Steps. For now, I will spare everyone the tedious details of the RCT protocol and analytic strategy. We are currently in the process of building a recruitment list and securing community resources to push this work forward. If this project is successful down the road, it will provide an innovative, tailored intervention paradigm for depression that is potentially very scalable, especially if adapted for an online/virtual format.