Informing the development of the coaching online and community health (COACH) program: a qualitative study of clubhouse members living with serious mental illness

Abstract

Health and wellness interventions addressing risk factors for early mortality among individuals with serious mental illness have demonstrated success and can be further augmented with digital technology. These programs may be suitable for delivery in psychosocial rehabilitation clubhouses, especially given many services have transitioned to digital platforms during the pandemic. This qualitative study aimed to: (a) explore clubhouse members’ experiences engaging with the virtual clubhouse platform, and their preferences for accessing digital wellness and health promotion content; and, (b) gauge members’ interest in an online peer-driven lifestyle intervention and their suggestions for program design. This study was guided by a community-based participatory action research framework. Ten focus groups were conducted with clubhouse members. Focus groups were coded and analyzed thematically by trained clubhouse members and the research team. Thirty-three members participated in the focus groups. Participants expressed the importance of having technical support from staff; that one-on-one support and consistent communication are important to keep them engaged in health and wellness programming; and described mixed views about use of the virtual platform, but generally were open to engaging in lifestyle intervention programming virtually. Participants who joined the clubhouse during the pandemic expressed feeling overwhelmed by in-person gatherings, and were especially interested in opportunities for remote participation. This study can inform health and wellness programming for delivery on the virtual clubhouse platform for members. The taxonomy of codes, created to generate a framework with recommendations, will inform the design of a virtual health and wellness intervention.

Implications.

Practice: Recommendations derived from these focus groups will be incorporated into a future health and wellness intervention for people with serious mental illness in a clubhouse setting.

Policy: Virtual service platforms created by clubhouses can be leveraged to expand the reach and impact of health and wellness interventions for individuals with serious mental illness.

Research: Future research is needed to examine the engagement of individuals with serious mental illness in health and wellness interventions delivered on virtual service platforms created by clubhouses.

INTRODUCTION

Individuals with severe mental illness (SMI) make up about 5% of the U.S. population [1] and are more likely than the general population to have chronic physical health comorbidities and elevated risk for cardiovascular illnesses [2]. This is partly driven by high prevalence of preventable risk factors such as tobacco smoking, high cholesterol, lack of physical activity, and poor diet [3]. Additionally, the combined impact of chronic poverty and mental health symptoms experienced by people with SMI puts this population at increased risk for homelessness, discrimination, and social isolation, all of which take a toll on their physical health and well-being [4]. Alarmingly, adults with SMI have disproportionately less access to quality medical care to address these chronic physical comorbidities even though these conditions are largely preventable [3]. Many commonly prescribed antipsychotic medications also cause weight gain and alter the metabolism [3]. Due to the combination of these behavioral, pharmacological, social, and health care related factors, individuals with SMI have a life expectancy that is a median of 10.1 years shorter than their counterparts without SMI [5].

Previous health and wellness lifestyle interventions aimed at addressing risk factors for early mortality among those with SMI have demonstrated success [6, 7]. A meta-analysis of health and wellness lifestyle interventions for people with SMI found that interventions of varying duration achieved modest but significant weight loss compared with control groups [7]. Longer duration lifestyle interventions (≥12 months), in particular, were 60% more likely to achieve clinically significant weight loss compared with control groups [7]. The InSHAPE and ACHIEVE programs represent particularly successful examples, as reflected in large clinical trials demonstrating clinically significant reduction in cardiovascular risk among individuals with SMI [8, 9].

Peer-led lifestyle interventions have also shown success in improving the health of people with SMI for certain outcomes such as illness self-management, dietary habits, and communication with doctors [10]. For instance, self-management interventions have demonstrated success when adapted to a peer-delivered model by combining educational and behavior-related content with lived experience and role modeling [10]. In a recent trial of a peer-driven, individualized mHealth coaching intervention called PeerFIT, the program resulted in comparable increases in cardiorespiratory fitness, decreased cardiovascular disease risk, and weight loss among young adults with SMI [11]. The PeerFIT intervention model demonstrates the value of engaging peers for lifestyle intervention and holds potential for scalability in public mental health settings given that it leverages widely available technology [12].

Although health and wellness lifestyle interventions have had success in improving the physical health of people with SMI and reducing risk factors associated with early mortality [7], few individuals living with SMI have access to these programs which are rarely implemented in nonclinical and community-based settings. Community-based organizations (CBOs) are positively positioned to ameliorate the health inequities impacting individuals with SMI, in part by shifting delivery of lifestyle interventions away from clinical settings, thereby increasing the accessibility of these programs and potentially reducing the stigma or negative experiences participants may have when seeking formal services [13]. Unlike many medical settings, CBOs and peer-led programs offer opportunities for daily participation, social spaces, and other support (e.g., health, employment, education, etc.) which facilitate reach and engagement of individuals with SMI. A case study which adapted the Diabetes Prevention Program for people with SMI and delivery in a CBO found that peer support was a key component which contributed to completing the program and that program objectives felt more ­realistic when they came from a peer who also had a history of SMI [14].

The clubhouse model is one evidence-based example, which uses therapeutic, intentional communities that provide meaningful relationships and offer purpose for their members. Membership in a clubhouse is voluntary, open to anyone with a serious mental illness history, and is without membership term limits [15]. Clubhouses use a community-based rehabilitation model, described as “Social Practice,” that provides strength-based peer interventions to help persons with SMI socially reintegrate and achieve agency in their health, quality of life, and care. The organizing principle of the clubhouse model lies in its creation of an intentional peer community where members are invited to (co)operate and participate in the decision making of every clubhouse program operation, supported by professional staff known as social practitioners. Members participate in the operations of the clubhouse through a structured work-ordered-day, wherein they join a unit or department within the clubhouse (e.g., research, wellness, education, etc.) to collaborate side-by-side with peers and social practitioners in conducting the unit’s services and operations [15]. The clubhouse model was pioneered by Fountain House, a clubhouse based in New York City, NY that was founded in 1948 [16], and has been replicated by over 326 programs in 36 U.S. states and 33 countries [15].

Health promotion activities at psychosocial rehabilitation clubhouses have shown promise. One structured exercise program that was implemented through a clubhouse, and carried out in a nearby facility, showed success in its design feasibility and improvements in respiration for participants [17]. Another healthy lifestyle intervention delivered in a clubhouse offered psycho-education throughout a 16-week program on nutrition, physical activity, spirituality, and tobacco awareness and established connections with community resources [18]. The researchers received feedback that members wanted more hands-on learning experiences, group interaction, and social participation and recommended that ongoing health programming be integrated into clubhouses [18]. While clubhouse program directors in the USA have reported a need for more programs on topics such as nutrition education, smoking cessation, and weight loss, barriers to implementation include high costs and lack of staff resources [19].

Drawing from the robust evidence-base demonstrating that lifestyle interventions can be tailored to the needs of individuals with SMI and achieve clinically meaningful reduction in cardiovascular risk factors for early mortality, there is an opportunity to leverage the clubhouse model to expand the reach and impact of these interventions in community settings. As clubhouses have developed virtual service platforms in response to the COVID-19 pandemic, there is also an opportunity to increase the capacity of virtual clubhouse (VCH) infrastructure to provide and scale access to evidence-based health and wellness programs in an online format and peer community forum, which has the potential to reduce cost and increase longevity of participation in programs. Since the start of the pandemic, Fountain House and other clubhouses globally have transitioned to hybrid and virtual spaces for members to actively participate in their own recovery at their own comfort level [20].

The presence of health disparities within this population, member engagement on the VCH, a peer-driven community program setting, and the ongoing pandemic presents an opportunity and need to develop healthy ­lifestyle ­interventions that leverage and are adapted to this unique context. The present study seeks to address this need by offering an investigation that will fill the gap in the literature for how virtual healthy lifestyle interventions can be successfully implemented and evaluated at clubhouses by conducting an initial qualitative exploratory study that achieves two overarching goals: first, explore clubhouse members’ experiences engaging with the VCH platform, and their preferences for accessing digital wellness and health promotion content and, second, gauge members’ interest and program recommendations for an online peer-driven lifestyle intervention adapted for delivery in community-based service settings. The online peer-driven lifestyle intervention will be adapted from the evidence-based Group Balance Lifestyle intervention and have supplemental content developed by the authors regarding peer engagement and the connection between physical and mental health.

METHODS

Study design

This study involved conducting focus groups with Fountain House clubhouse members. Fountain House and Harvard researchers joined clubhouse meetings related to health and wellness to explain the goals of the study and how focus groups would inform the design of virtual content for health promotion and lifestyle interventions for people with SMI. Interested clubhouse members were sent a follow-up email with additional information about the study. Eligible participants were clubhouse members and were minimum of 18 years of age and older.

Guiding framework

A primary component of the therapeutic model at Fountain House is the maintenance of egalitarian relationships between members with SMI and staff. In alignment with this component of the therapeutic model, Fountain House applies principles of community-based participatory action research (CBPAR) to actively involve members throughout research processes. CBPAR aims to involve those impacted by a situation (i.e., SMI and clubhouse involvement) in research that could result in program changes or additions [21]. While the concept of lifestyle intervention and health promotion, and the core components necessary to achieve these goals, are derived from decades of research from the general population as well as more recent scientific literature from SMI populations, it is essential that Fountain House members desire this potential program and share power in its design. A CBPAR framework was used to guide the primary objectives of the present study, data analysis, and manuscript development through active member participation at all stages of the project, as described in the sections below.

Ethics approval

Informed consent was obtained from all participants in the study. This study was reviewed and approved by the Institutional Review Boards at Fountain House and Harvard Medical School.

Data collection

Ten focus groups were conducted from August 2021 through October 2021. Six of the focus groups were conducted via Zoom and four focus groups were conducted in person at Fountain House in New York City. Focus groups consisted of 1–7 clubhouse members. The median number of attendees was 3 per focus group. Only one virtual focus group had one participant (due to challenges with scheduling). Each focus group lasted approximately 60 min. Participants received either a grocery store or Amazon gift card in the amount of $40 to compensate them for their time. The focus groups were audio-recorded and transcribed for analysis. Fountain House keeps record of demographic data (age, gender, diagnosis, etc.) for operational purposes. Fountain House provided the Harvard research team with de-identified aggregate demographic data of the clubhouse members who participated in the focus groups.

Qualitative data analysis

Four independent researchers, two from Fountain House and two from Harvard, coded two randomly selected focus group transcripts using inductive reasoning. The researchers discussed their individual codes and came to a consensus about a codebook with an initial set of codes. Three Fountain House clubhouse members trained in qualitative research methods then coded the first two focus group transcripts. Researchers met with the Fountain House members to discuss their codes and resolve any differences between member coding and the research team's initial codebook. Discrepancies between codes were resolved through discussion with all team members. Once the team members came to a consensus, the codebook was updated to reflect the consensus of the group. A team of researchers including the clubhouse members was utilized to improve the depth and breadth of the analysis and findings. The clubhouse members’ perspective was especially important to ensure that the analysis and findings were in line with the needs of the community and Fountain House’s practice of CBPAR.

The research team, including the clubhouse members, then coded two focus groups independently each week, met to discuss codes and came to consensus on the coding for each focus group. Codes were refined, added, or removed from the codebook in an ongoing iterative process as the data was reviewed, if agreed upon by the entire coding team. Because all codes for each focus group were discussed and all members of the coding team came to a consensus for each code, intercoder reliability was not assessed.

After all 10 transcripts were coded, the research team met and discussed topics that emerged from the participants’ responses most frequently to identify information that could help promote engagement with virtual health and wellness programming and inform the design of a future intervention. The research team created a taxonomy of the codes generated by participants’ responses by organizing the codes into different domains based on their content and relationship to other codes. The research team chose to create a taxonomy of the codes as opposed to identifying themes to develop a theory because the goal of this analysis was to inform services immediately and inform intervention design as opposed to describe or explain an in-depth illness phenomenon. The research team read through the codes of all 10 focus groups and then organized the codes into related categories which became the following domains: Platform, Health and Wellness Content, Motivation, and Coaching. Subdomains consisting of groups of codes capturing a similar sentiment on a particular topic were then also established applying the same method to reflect the complexity of the findings. After creating the taxonomy, the research team presented the results back to the Fountain House community for feedback, and collected a brief questionnaire created by Fountain House asking how accurately they viewed the recommendations from the focus groups relative to their own personal experiences. The scale ranged from 1 to 10, with 10 representing the most accurate possible. Feedback from the Fountain House community members was incorporated into the findings and is included in the results and discussion section of this paper.

RESULTS

Participant characteristics

In total, 35 clubhouse members participated across 10 focus groups. Participants ranged in age from 28 to 69 years, N = 19 (54.3%) were women, and most had bipolar disorder (N = 12; 34.3%), schizophrenia (N = 8; 22.9%), or schizoaffective disorder (N = 6; 17.1%). At the time of enrolling, participants’ length of membership at Fountain House ranged from 1 to 43 years. Participants’ engagement with the VCH platform varied, with some participants showing frequent usage, while others engaged with the platform less often. The maximum number of virtual engagements was 53 and the minimum was 0 (IQR = 1–18) in the month prior to the first focus group. Participant characteristics are summarized in Table 1.

Table 1.

Sociodemographic characteristics of participants

Participant characteristic
Age
<28	0 (0.0%)
28–35	8 (22.9%)
36–59	15 (42.9%)
60–69	12 (34.3%)
69<	0 (0.0%)
Gender
Female	19 (54.3%)
Male	16 (45.7%)
Race/ethnicity
White	16 (45.7%)
Latinx	6 (17.1%)
Asian	4 (11.4%)
Black	4 (11.4%)
Native American	1 (2.9%)
Multiracial	1 (2.9%)
Not reported	3 (8.6%)
Diagnosis
Bipolar disorder	12 (34.3%)
Schizophrenia	8 (22.9%)
Schizoaffective disorder	6 (17.1%)
Major depressive disorder	4 (11.4%)
Borderline personality disorder	1 (2.9%)
Obsessive compulsive disorder	1 (2.9%)
Post-traumatic stress disorder	1 (2.9%)
Unknown	2 (5.7%)
Years of membership
1–3 years	13 (37.1%)
3–10 years	9 (25.7%)
10–43 years	13 (37.1%)

Coding analysis

The coding and analysis generated four overarching domains related to the key goals of this project to explore members’ experiences with the VCH platform, and to better understand their interest in accessing an online peer-driven lifestyle intervention through the platform. These domains are summarized below. Quotes from each of the following domains and subdomains can be found in Table 2. Key recommendations generated for each domain can be found in Table 3.

Table 2.

Summary of overarching domains identified through taxonomy of codes

Domain	Subdomain	Codes	Sample quotes
Platform	Platform challenges/barriers	Tech accessibility, access barrier leading to isolation, user interface, social cues & tech	1. Tech accessibility “I feel like the clubhouse, they were really getting their stuff together for about six months. Which I get. But a lot of people were having trouble getting into meetings and sometimes meetings didn’t start.” Participant 2; FG9 2. User interface “…I don’t know how to access the Fountain House Daily. But if they give me the link through text, I could just access it and participate…” Participant 3; FG5 3. Social cues & tech “I’m also an extremely shy person and I am autistic so I’m understanding digital is much easier for me than understanding human, social cues. So, I’ve been able to connect with people in what feels like a much more natural way online than I would be like if we were all in a in a group in a physical space.” Participant 1; FG2
Platform	Platform facilitators	Unstructured social time, tech support, safety	1. Unstructured social time “…The most exercise I need was social. So open Zoom room was like the best health and wellness intervention for me because I could talk to people for an hour. And that helped me gain momentum in that way and exercise those skills that I wouldn’t otherwise be exercising.” Participant 7; FG7 2. Tech support “I’m pretty computer-savvy, but it was still—I just didn’t have the motivation to do it. And then I didn’t know exactly how to—it had all these codes and everything, which confused me. So, having someone to kind of show me…might have helped.” Participant 2; FG5 3. Safety “I’m usually a person that likes to go into the brick and mortar. But I haven’t since 2019… I have comorbidity issues. I’m an older person and it’s built up somewhat of a fear in me…I have fear with those that are not inoculated…” Participant 2; FG10
Platform	Platform user experience	Hybrid, legacy v VCH only	1. Hybrid “Yeah I think hybrid is a good idea. Hybrid is good because then you have a choice to come in or do it at home and you still stay connected whether or not you come in…” Participant 1; FG7 2. Legacy v VCH “I have kind of a unique take on it, because I joined Fountain House during the pandemic… and going into this physical space has been a little disconcerting because the building is quite large…The virtual connection has been ideal for me…being able to hop around…” Participant 1; FG2
Health and wellness content	Health and wellness programming	Member-initiated activities, suggestions	1. Member-initiated activities “…I started to make my own events for Fountain House… I had trouble waking up in the morning. And so, I made a group because I noticed other people were also having the same issue. I made a group that meets for every morning at 8:45 and just check-in for 15 minutes. And it always gave us a reason to wake up on time. And the group still continues going to this day. It’s very helpful.” Participant 7; FG7 2. Suggestions “…There’s a void for evening and weekend programming. Especially on the weekends…People going to the Fountain Daily calendar, there’s hardly any programming there.” Participant 3; FG9
Health and wellness content	Psychology of health and wellness	Routines/structure, mental and emotional fitness, fun	1. Routines/structure “…When my mind wasn’t working so well, the routine, because it is a set routine, really helped me…There are great programs. But when you have a severe mental illness, it goes through you like water. You’re not gonna remember certain things and you’re just trying to get through.” Participant 1; FG7 2. Mental and emotional fitness “…it’s just as important to exercise, take care of in strengthening the mind as well. Which is why there is programming, like the DJ music room. That’s why there’s open Zoom rooms, you know four times a week. Because it gives people a chance to express through words, through art through music, I feel that those components are of wellness is just as important as physical exercise, you know, and eating healthy too…” Participant 3; FG9 3. Fun “…when I exercise and I go for walks or whatever, I know that I don’t do anything without music, because I know that is soothing to my soul. It’s like it just takes me away from everything that goes on around me, you know it’s like a motivation mechanism…” Participant 5; FG9
Motivation	Promotes motivation	Physical health and mental health connection, peer support, accomplishment, financial motivations, anxiety about health and wellbeing, maintaining community, inertia	1. Physical health and mental health connection “I really firmly believe that physical and mental health are very entwined… Anything that improves your physical health is going to improve your mental health…” Participant 1; FG2 2. Peer support “…If I could figure out what could motivate me to do anything… my life would be very different…, I would say someone holding me accountable, but then I have like a fitnessy friend and I found her very annoying when she would like send me something. So maybe just other people in my fitness level who are also—who have difficulties.” Participant 3; FG3 3. Accomplishment “…my mental state of mind and, you know, just feeling no aches and pains in my body. And just feeling fit and being able to climb up the stairs without being overwhelmed with my breathing. And, you know, so that I can breathe better…” Participant 1; FG5 4. Financial motivations “ Fountain House is trying to help other members in case they can decide to move up and making income and all that too… Then able to work with Fountain House with that like a budgeting or something like that…” Participant 2; FG3 5. Anxiety about health and wellbeing “…I had diabetes…My family suffer from diabetes and I lost a couple of family members people to diabetes… So, I lost a lot of weight and my doctor he’s happy with it. I have my diabetes under control and then I don’t take the diabetes medication anymore…” Participant 1; FG8 6. Maintaining community “…And I actually enjoy the Zoom aspect because it brought a sense of community, when I was isolated my apartment and couldn’t go to the clubhouse. I actually met more people, socially by using Zoom, because there was more access, you know, in one setting to have people gather. So, I’m enjoying it immensely.” Participant 3; FG4 7. Inertia “When I feel better about myself, I’m more likely to want to work out because I care about myself. And then if I actually work out and meet a goal, then I will feel better about myself. But it’s all about starting…I think the motivation thing is the most important thing…” Participant 3; FG3
Motivation	Inhibits motivation	Stigma, low self-confidence, isolation	1. Stigma “For me it’s different it’s more of the stigma of what I look of my size, so I don’t know. I mean you know eating disorders are part of you know, mental illness, so I mean. Yeah, the way that I because of the mental illness, the size that I am, I don’t want to be ridiculed.” Participant 2; FG6 2. Low self-confidence “…I was like walking stuff and then a couple of months there like I got like this, I got a Citi bike membership. So, like I said I find myself like increasingly like starting to get back again to biking…about maybe February or so—I think I finally found myself confident enough to go to the gym…” Participant 2; FG4 3. Isolation “…I actually lost a family member, not due to COVID, but a very close family member during the pandemic right at the beginning, around that time so coupled with the isolation and dealing with not being able to go to Fountain House and just dealing with grief that I’m still dealing with over a year later. I completely lost motivation to continue virtual workouts and do the training I was doing.” Participant 2; FG2
Coaching	Charisma	Activity leader, individualized attention	1. Activity leader “… It is the chemistry within like certain members and staff…Yeah I’d say chemistry, maybe the size of the group is one thing, is another thing you know. Am I engaged in it? Do I find this engaging? Am I going to check my phone?” Participant 2; FG4 2. Individualized attention “…When I was a little bit more impaired, the group setting was very helpful…The thing about it – the individualized attention – I couldn’t slack off. Like even when I said my hands kind of hurt, he made adjustments. And on one hand I kind of liked it. On the other hand, I said ‘Oh crap’. I’ve got to push myself.” Participant 1; FG1
Coaching	Regular communication	Continued contact, accountability	1. Continued contact “Virtual clubhouse really to me was—I use it for resources… to keep in the loop…So really it was just kind of a landing point for me doing that, and you know in-person is really the thing for me, but I mean it’s great for connection if I need something.” Participant 1; FG9 2. Accountability “I was looking for this opportunity to be able to be more helpful… And as we were setting up the system, to be able to maneuver in and out of the units coming from the communications unit being able to actively engage. To be able to just continue on…. So, for me it was being able to help others.” Participant 2; FG10

Table 3.

Summary of recommendations

Domain	Recommendations
Platform	• Programs should be offered in person, hybrid, and virtually • There should always be moderators for large Zoom meetings or hybrid meetings • For hybrid programming, it is important for a moderator to divide attention between virtual and in person attendees and make sure that one group is not neglected • It is critical that links are kept up-to-date and programming schedules are consistent across all communications (email announcements, message boards, etc.) • Allow participants to choose whether they would like to have their camera on during Zoom meetings. Different clubhouse members have different comfort levels • The platform should include open Zoom rooms to give the chance to exercise social skills • Staff needs to be available to help participants set up software/hardware and to demonstrate their use
Health and wellness content	• Programming should be integrated throughout the clubhouse, not siloed in individual units • Programming should be: structured, consistent, fun, and strengthen mental and emotional fitness • If an event series is ending, a new continuous series should take its place • Member-initiated or peer-led activities are particularly helpful • Existing programming that is helpful: unstructured social Zoom events, 8:45 am Zoom check-ins, chair yoga, peer-to-peer cognitive behavioral therapy (CBT) group, meditation/stretching group, motivation hour, walking groups, habit-tracking group (called Friends for Change), smoking cessation group, gym equipment training, and vegetarian cooking class • New requested programming: Tai Chi, diabetes management, healthy cooking, and nutritional literacy • Partnerships with Noom, Weight Watchers, and/or Ryan Chelsea Center to provide referrals and scholarships to these organizations are needed
Motivation	• Improvements to depressive symptoms, emotional regulation, sleep, and anxiety motivates to continue exercise • Feeling accomplished motivates people to follow through on goal or leads to appreciating life after following healthy behaviors • Motivated to engage in healthy behaviors because of anxiety about health and wellbeing, doctor’s recommendations, and a desire to remain active • Once start engaging in healthy behaviors, especially exercising, able to stay in motion and follow through on more goals • Peers motivate each other through accountability and by cheering each other on • Intervention should prevent items that inhibit motivation: stigma, low self-confidence, and isolation
Coaching	• Credentialed activity leaders are preferable • Individualized attention and help creating a personalized plan • “Passive” coaches (coach is available, but not actively reaching out) • Compatible personalities are necessary • Regular and consistent communication • Prefer small groups, if a large group then designated moderator • Desire to be with others at the same skill level as them in group setting • Helping others increases accountability

Platform

In this domain, participants described both positive and negative aspects of their use of technology or interaction with virtual or hybrid Fountain House spaces. For instance, they described challenges related to accessibility, feeling isolated when only being able to interact with others using technology, and difficulties with navigating complex user interfaces. They also described facilitators such as benefiting from unstructured social time on Zoom, receiving tech support from other members and staff, and feeling safer interacting online to prevent risk of exposure to COVID-19.

Participants shared mixed views about hybrid programming at Fountain House. Hybrid programming in this study is defined as activities that have clubhouse members who are physically present as well as clubhouse members who are virtually present. Some participants felt that the hybrid model needs to be improved and that it is hard for facilitators to equally divide their attention between in person and virtual attendees. Other participants preferred hybrid programming because it allows more flexibility to choose which events and meetings they would like to join. A subset of participants strongly preferred in person programming because they felt that Zoom meetings were not as personal or social. Participants who did not engage in the VCH commented that they would be more likely to participate if the Fountain House staff had helped them set up necessary software and hardware, and had offered a demo for navigating the platform. Some participants found using the VCH platform difficult because it was harder to pick up on social cues, control the volume of their voice or add their opinions in conversation, while others found that it was helpful for their social anxiety because they could mute themselves or turn off their cameras when feeling uncomfortable.

Health and wellness content

In this domain, participants reflected on their personal experiences engaging in physical activity, nutrition activities, or other healthy lifestyle behaviors. They offered specific suggestions for new programs, such as ensuring that classes have structure and routine in each session, include “fun” aspects such as music, art, as well as adapt features that strengthen mental or emotional fitness. Participants recommended that health and wellness content be integrated throughout different clubhouse activities.

Participants suggested that if one activity must end, another innovative, continuous event should replace it. They highlighted that member-initiated or peer-led programs were particularly helpful, and commented that participants who started and led their own activities (e.g., morning check-ins) feel accountable to the other members of their group, thereby encouraging participants to attend. Participants suggested that Fountain House directly partner or learn from popular programs such as Noom, Weight Watchers, and the Ryan Chelsea Center. Partnerships could involve information sessions hosted by these entities or referrals and scholarships to use their health and wellness content (which are typically costly and out of reach for most members). Participants also described the types of programming they enjoyed, and offered suggestions for the types of remotely delivered programs they would like to see available on the VCH. This included unstructured social Zoom events, morning Zoom check-ins, chair yoga, peer-to-peer cognitive behavioral therapy, meditation/stretching group, Tai Chi, motivation hour, walking groups, habit-tracking group (called Friends for Change), smoking cessation group, gym equipment training, and healthy cooking classes and content to promote nutritional literacy.

Motivation

In this domain, participants identified things that were likely to affect their level of motivation to participate in health and wellness programming. Personal relationships, improved quality of life, and feeling accomplished were all identified as increasing the motivation to participate or continue to participate in healthy behaviors. In addition to promoting motivation, participants expressed the importance of also addressing items that inhibit motivation such as stigma, low self-confidence, and isolation.

Many participants noted that social connections increased their motivation to participate in health and wellness programming and the VCH. Social connections helped increase accountability, create feelings of community, and reduce isolation. Participants also explained how peers and friends motivate them by offering support, cheering them on, and providing company. Feeling isolated or being separated from the in-person clubhouse community was identified as something that decreased motivation for engaging in health promoting activities. Participants emphasized the reciprocal relationship between physical and mental health, where their motivation to exercise was driven by the improvements they noticed postexercise in depressive symptoms, emotional regulation, sleep, and anxiety. One participant suggested a peer-to-peer cognitive behavioral therapy group, which may help address the reciprocal relationship between physical and mental health and incorporate peer support. Others mentioned feelings of accomplishment gained from following through on a goal or just generally feeling better and appreciating their life after following healthy behaviors. Participants also expressed feeling motivated to engage in healthy behaviors for their future wellbeing, doctor’s recommendations, and a desire to remain active, especially as they age. They commented that a successful virtual environment for health promotion should be safe and enable participants to feel accepted, confident, and loved in their bodies.

Coaching

This domain captures the participants’ perspectives on who should lead activities, provide coaching, and how a coach or activity leader can best support them through the virtual programming. Participants discussed how and how often they would like to be contacted and some of the qualities they would prefer in a coach.

Participants expressed interest in having activity leaders with expertise in the topic they are speaking about or activity they are leading, and suggested having one-on-one time with someone to create and implement a personalized plan to increase the likelihood of their engagement. However, some preferred to reach out for support rather than be contacted by a coach. Participants stated that the personality of coaches and activity leaders is important to help increase their level of engagement and commitment to the content. Participants mentioned that personal compatibility between themselves and the person leading the activity is essential, as they felt the need to be paired with someone approachable and compassionate. Regular and consistent communication from program leadership was seen as something that would make participants feel more accountable as well as helping other peers within groups. Some participants expressed interest in groups with others that are at their skill level, because exercising with others who are at a higher skill level can feel intimidating. Some participants mentioned that they prefer small groups as opposed to larger ones and prefer an official moderator when in a larger group.

Feedback from clubhouse members

After organizing and summarizing these results, the research team presented the recommendations from each domain to clubhouse members who participated in the initial coding and analysis for their feedback. The member coders felt that the results of the qualitative inquiry were both reflective of their own personal experiences and of what they read in the transcripts during the coding process. The member coders provided additional recommendations based on their interpretations of the codes. First, they suggested that a code of conduct be established for the VCH to encourage empathy and compassion toward each other online. The member coders also recommended that Fountain House provide scholarships for their members to participate in health and wellness programs external to Fountain House] (e.g., local gyms, Weight Watchers, etc.). After incorporating their suggestions into the list of recommendations for programming, the research team in collaboration with member coders presented the summary of recommendations to the wider clubhouse community. Seven Fountain House members attended the presentation and rated how accurately they viewed the recommendations from the focus groups compared with their own personal experiences on a scale ranging from 1 to 10. Average ratings were 7.6 out of 10 for coaching recommendations, 7.0 out of 10 for platform recommendations, 8.1 out of 10 for health and wellness content recommendations, and 7.7 out of 10 for motivation recommendations.

DISCUSSION

This initial study explored Fountain House members’ experiences with engaging with the VCH platform, their preferences for accessing digital wellness and health promotion content, and recommendations for improving and expanding the reach of lifestyle programming offered on the VCH. The VCH was launched quickly after physical distancing restrictions were put into place due to the COVID-19 pandemic, as clubhouses in New York adapted their current programming and essential services to be delivered remotely through platforms such as Zoom, Facebook, and Slack [20]. Because people with SMI were already at an increased risk for loneliness and isolation before the pandemic, adapting these programs for remote delivery was critical for meeting the needs of the community [20]. The platform has since been expanded, and now has potential for offering more services to members.

Participants in our study expressed mixed views about use of the VCH platform, with some commenting that meeting new people virtually was better for their social anxiety, while others found it difficult to interact online and to pick up on social cues. Interestingly, some participants joined Fountian House during the pandemic, and therefore, their only interactions with other members have been over the VCH, and they expressed feeling overwhelmed with coming to in-person gatherings compared with remote participation. Regardless of participants’ level of engagement in the VCH, they expressed the importance of having staff help them get online and navigate the virtual environment. An international survey of clubhouse members reported only 15% of respondents received any technical support to access virtual programming, suggesting that increasing the availability of technical support could significantly increase the number of virtual participants for these programs [20]. Participants also expressed that one-on-one support and consistent communication are important to keep them engaged in health and wellness programming offered on the VCH, and would keep them accountable to their health goals. Another case study which sought to adapt the Diabetes Prevention Program to be delivered in a CBO to people with SMI, added one-on-one sessions between the participant and peer support specialist every 4 weeks in response to the feedback received in their focus groups [14]. Participants’ descriptions of their own experiences using the VCH platform, as well as their perspectives of how to stay motivated when engaging in lifestyle activities afford valuable insights for informing the delivery of virtual health promotion content that is both interesting and relevant to members.

When the recommendations derived from the focus groups were presented to the wider clubhouse community, many members agreed with the findings from the focus groups and had some additional recommendations and comments. Clubhouse members who attended the presentation agreed with focus group participants about having experts delivering health and wellness content. Members also reiterated the importance of inviting a licensed nutritionist to speak about healthy eating, particularly related to the needs of individuals with diabetes. Focus group participants in the previously referenced case study also expressed interest in receiving more information about healthy eating and diabetes prevention [14]. There were mixed opinions about the value of virtual programming for health and wellness content, just as there was during focus group discussions. Some members like the flexibility of virtual content while others expressed the importance of being together in person.

Under the clubhouse model’s “social practice” approach, a sense of community is important for people with SMI’s quality of life [20]. In a prior international survey, over 90% of clubhouse members reported that connecting with their peers online was an important coping mechanism for them during the pandemic [20]. During the pandemic, there was also an increase in clubhouse member reengagement [20], with inactive members reconnecting with the clubhouse to rejoin the community or seek out support [20]. Participants in our focus groups stated that using the VCH during the pandemic was important to maintain a sense of community. One participant explained “…I actually enjoy the Zoom aspect because it brought a sense of community, when I was isolated [in] my apartment and couldn’t go to the clubhouse. I actually met more people, socially by using Zoom, because there was more access, you know, in one setting to have people gather….” Being able to draw from this community support is especially important in the context of lifestyle interventions. A mixed methods study found that receiving emotional support from other members of a peer group increased participants’ motivation and helped them sustain their health behavior changes and achieve clinically significant weight loss [22]. Our participants reiterated similar points when stating that their connections to their peers were more likely to hold them accountable to participate in health and wellness programming. Another participant expressed the following anecdote, “I didn’t want to get my [butt] out of bed and I showed up at the exercise class late. But they go through a welcoming exercise in the park. I just wanted to see my friends. I wouldn’t have done it if it weren’t to see [my friends].” A qualitative study interviewing community mental health providers, found that many providers also recognized that peer partnerships increased the likelihood that their clients would engage in healthy behaviors [23]. However, some expressed that many unhealthy lifestyle habits (e.g., over-eating, smoking, etc.) originate in their clients’ families or friend groups and need to be unlearned [23]. This perspective was not expressed in our focus groups, perhaps reflecting the views of participants from the clubhouse, where the role of supportive peer connections is strongly valued.

Prior research with peer and non-peer-staff, leadership and clients at three supportive housing agencies for people with SMI found that peer specialists were able to draw upon their shared experience to engage participants and address obstacles that arose in a way that non-peer staff could not [24]. Another study evaluating the attendance of people with SMI in the Peer-led Group Lifestyle Balance program in supportive housing, found higher attendance than previous trials delivered by non-peer staff likely because the program was delivered by peer specialists [25]. Another study highlighted that the personal compatibility of the person leading the intervention content and participants in health and wellness programs is critical, as participants feel like they are treated with respect and not judged by the peer specialists [26]. Similarly, participants in our study emphasized that personal compatibility and liking whoever is leading the intervention content is necessary to keep participants engaged in the content. One participant expressed “I will say like chemistry is really important to kind of have.” Prior research also indicates that challenges that are appropriately matched to the skill level of people with SMI provide increased feelings of control [18]. Our participants expressed they want to engage in content and be in groups with others that are at their skill level and that exercising with others who are at a higher skill level is intimidating. One participant stated “… I would say someone holding me accountable, but then I have like a fitnessy friend and I found her very annoying when she would like send me something. So maybe just other people in my fitness level who are also—who have difficulties….” Prior research has also described the importance of normalizing slips instead of celebrating success, with participants being motivated by acknowledging they made a mistake but recognizing that they can get back on track [26]. While we did not explicitly observe this in our study, these prior studies complement our current findings and can inform the development of virtual lifestyle intervention programming for individuals with SMI.

There is a relationship between involvement in meaningful activities and quality of life for people with SMI [18]. Interventions for people with SMI should be meaningful and include creative and expressive activities, social participation, working or volunteering, reading, and programs for mental health [18]. In a qualitative study with mental health providers in northern Colorado and Wyoming, nearly all providers expressed that health education needs to be meaningful, rewarding and fun for clients [23]. Our participants expressed that they were more likely to participate in health and wellness activities that brought them joy, such as expressive or creative activities like art or music. A quote from one participant highlights the role of music in motivation “…because I know when I exercise and I go for walks or whatever, I know that I don’t do anything without music, because I know that is soothing to my soul. It’s like it just takes me away from everything that goes on around me, you know it’s like a motivation mechanism….” Community resources and involvement in programming encouraged engagement of people with SMI and also created opportunities for them to incorporate meaning into daily activities [18]. In a survey of international clubhouse members, most reported that keeping a daily routine was the most effective coping mechanism for stress during the pandemic [20]. Participants in our focus groups also expressed the importance of maintaining a routine for their health and wellness. This was reflected when a participant stated “…. when my mind wasn’t working so well, the routine, because it is a set routine, really helped me. […]. So, I would like routines with combined stretching and exercise along with a little meditation like a breathing exercise….” Leveraging community resources available from Fountain House, across both virtual and in-person environments, to create a daily routine could potentially increase engagement in health and wellness content for this population.

Our study was limited to one clubhouse location in New York City. Clubhouse members in suburban or rural communities may have different needs and preferences pertaining to use of a virtual platform and engaging in lifestyle intervention content compared with clubhouse members in urban areas. Therefore, caution is warranted when interpreting the results of this study, as these findings may not be generalizable to all clubhouses. Additionally, all participants were 28 years or older, making it difficult to determine if these findings would be applicable to younger adults. Furthermore, participants were already engaged in clubhouse activities and therefore may already be highly motivated to participate in lifestyle interventions, which may not reflect the views and attitudes of members who are not actively participating in a clubhouse or individuals with SMI who are not associated with a clubhouse.

The recommendations from these focus groups will inform our adaptation of the Group Lifestyle Balance intervention to suit the needs of Fountain House members and inform approaches to increase and promote their engagement in these activities. The recommendations will also inform the protocol for a health coach who will provide support for members in a one-on-one capacity toward reducing risk factors for early mortality in this vulnerable population group. The goal is to design this intervention to have maximum engagement while aligning with the guiding principles of Fountain House and minimizing attrition as much as possible. The responses from our participants suggest that increasing access to technical support for clubhouse members could increase the virtual engagement of this population and may specifically promote engagement with health and wellness content. Importantly, the VCH platform offers new opportunities to reach individuals with SMI, as was demonstrated by its ability to increase new membership during the pandemic as well as achieve remote contact with previously inactive clubhouse members [20]. The VCH platform also creates an opportunity to adapt and scale a health and ­wellness ­intervention for people with SMI through the global Clubhouse network.

Funding

This study was funded by the Hoffman Foundation.

Compliance with Ethical Standards

Conflict of Interest: None declared.

Ethical Approval: All procedures performed in this study involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent: Informed consent was obtained from all individual participants included in the study.

Welfare of Animals: This article does not contain any studies with animals performed by any of the authors.

Transparency Statements:

1.This study was not formally registered.

2.The analysis plan was not formally preregistered.

3.Deidentified data from this study are not available in a public archive. Deidentified data from this study will be made available (as allowable according to institutional IRB standards) by emailing the corresponding author.

4.There is no analytic code associated with this study.

5.Materials used to conduct the study are not publicly available.