Authors: Jon Loyd, MD and Paul Freund, MD
Abstract
A Positive Deviance (PD) strategy was applied in two mental health service settings to the problem of social isolation of people with mental illness. The individuals who participated in these initiatives were enthusiastic about discovering existing solutions to the social isolation that they and their peers experience. They discovered many practical solutions among their peers, and were able to co-create activities where socially isolated individuals could practice and learn how to be more socially involved in their community. The challenge to sustaining these initiatives is to discover ways to nurture a sense of community among participants who, as a rule, rely on service providers to meet their social needs.
“By connecting with each other we are beginning to understand the hidden skills of others and the struggles of those who are isolated…We are starting to rely on each other, friend-to-friend, by asking someone who is isolated if we can help them get the bus, or come to the doctors because they are afraid to go alone, or go to lunch together…For the first time in our lives having someone else who’s in the same boat to talk things over…It is a new door to a different kind of life.”
- A participant in the PD program to enable people with
mental illness to overcome social isolation
The application of Positive Deviance (PD) in mental health began in Pittsburgh, Pennsylvania in the US through the local chapter of the National Alliance for Mental Illness (NAMI) of Southwestern PA. In the fall of 2009, the NAMI Southwestern PA Board reviewed a report which found that living with serious mental illness may shorten one's lifespan by nearly 25 years (Parks, Svendsen, Singer & Foti, 2006). The Board, encouraged by the present authors, decided to pilot the PD approach to see if some existing solutions would emerge from those individuals living with mental illness.
Since 2009, the authors (who among them have a range of PD coaching experience) have applied the PD approach in two mental health support settings in the Pittsburgh area. The first initiative was based at New Horizons, a program of the Peer Support and Advocacy Network, staffed exclusively by individuals with mental health diagnoses. The second initiative was based at Western Psychiatric Institute and Clinic in their Assertive Community Treatment (ACT) Team, a service for people who had been hospitalized for many years to treat their mental health conditions.
Initiative #1: New Horizons
Initial conversations with members, all of whom had a diagnosis of mental illness, indicated that they were strangely unconcerned about their statistically poor life expectancy. They were most concerned about the poor quality of their lives, social stigma and isolation. However, a core group of members volunteered to work on this problem, and to look for solutions that could exist among their peer group.
In 2011, New Horizons volunteer members and their peer specialists were trained in the PD approach over several meetings. These trained volunteers interviewed their peers and found that most of them were socially isolated. The interviews disclosed common contributing behaviors and barriers. The group then designed a survey to record social events that New Horizon members participated in over a typical weekend. Weekend activities were chosen because the New Horizons Drop-in center is closed on weekends. The survey was explained to all the members of the drop in center and 46 members participated in recording their weekend activities. The group then reviewed the surveys to see if there were any variations in the amount and quality of activities recorded. Sure enough, there were some members whose weekend activities were much busier than everyone else’s. They were labeled as “Busy Bees.” These “busy bees” were then interviewed and observed in the community by the volunteers to determine the specific social skills and strategies that enabled them to be active participants in their community.
A volunteer observer related the following experience when he observed one of the “busy bees” while he was at choir practice:
“I was there to observe Elaine (fictitious name) and not participate, which made me feel awkward as an outsider. She immediately went up to the Choir Master with a big smile on her face and said, “There is my friend Lee”. The other Choir members didn’t seem to mind at all that I was there and went on with their rehearsal. Elaine would nod her head, smile and say ‘uh huh!’ to members when the singing went well, and she was still jovial and laughing when the singing wasn’t so good. She just approaches people with a big smile and friendly greeting, where I over think how people will respond to me if I approach them. She just does it.”
The interviews and observations of “Busy Bees” (such as Elaine) yielded several uncommon behaviors that helped overcome social isolation:
Busy Bees make eye contact and smile when greeting someone. By so doing they communicate a genuine interest in getting to know the other person.
Busy Bees watch how close people stand when they speak, and try to do the same. This behavior communicates respect for the personal rules individuals’ follow when relating to others.
Busy Bees have a short phrase to say when getting on the bus, or at the checkout counter. This gives the other person a common subject to begin a conversation.
Busy Bees maintain a routine, e.g. getting on the same bus every morning, eating breakfast at the same diner at the same time every Saturday. These routines allow others to gain familiarity with them, and open possibilities for conversation and friendship.
Volunteers shared their (PD) findings with peers and created activities that enabled those who were struggling to practice and build these social skills with support from the “busy bees”. Bingo was the most popular activity at the drop-in center. In order to reach as many members as possible they modified the game and called it “Interactive Bingo”. It’s like regular Bingo except for designating every third ball drawn an activity ball where players who have that number on their Bingo card have to come up to the front of the room with a friend to act out a specific “Busy Bee” behavior. Bingo winners received coupons to a local café where they would practice the discovered behaviors in the real world.
The Assistant Coordinator of the drop-in center described how the PD process enabled members to discover and amplify solutions to social isolation that already existed among members:
“Starting with just a few members participating, many of the shiest are now playing as the word gets around. Interactive Bingo is now the most popular game we have ever had at New Horizons. Currently, Quest for Community is working on creating a Weekenders Club to enable members to self-organize and create opportunities to practice the skills learned after playing interactive Bingo out in the community.”
Results show that the PD approach significantly improved the social skills and engagement of 20 individuals who had previously been social recluses. They now have places in the community, such as coffee shops, a church and the local library, where they socialize on a regular basis.
Initiative #2: Together Against the Odds (TAO)
Very few people with serious mental health conditions such as schizophrenia or bi-polar disorder are being treated in state mental hospitals today. Since 2007, intensive community-based services, like Assertive Community Treatment (ACT) teams, have demonstrated success in treating former in-hospital patients in community settings (Rosen, Mueser, Teeson, 2007). However, recovery and community involvement for these patients can take many years, sometimes decades to achieve (Prince & Prince, 2002). When Mayview, the regional state mental hospital in Pittsburgh, closed in 2009, some- 246 of the 306 former patients, with an average stay of five years, were discharged to the care of Assertive Community Treatment (ACT) Teams in the Pittsburgh area (Allegheny HealthChoices, Inc, 2015).
In 2012, Susan Wolfe, the director of an ACT Team at Western Psychiatric Institute & Clinic –Transition Unit (WPIC-TU) in Pittsburgh, PA expressed an interest in exploring the PD approach to address social isolation for those who were under ACT’s care. The story of the New Horizons initiative provided the introduction to how PD could be utilized for the “community” of individuals receiving ACT services. The authors introduced the PD approach to WPIC-TU staff who unanimously opted in to support this approach and invited their customers to participate. A small “Leadership Group” of ACT consumers and ACT staff volunteered to participate. Like New Horizons, members of the WPIC-TU Leadership Group, identified social isolation as their number one problem and were eager to learn how to use PD to address it. They named their initiative “Together Against the Odds” (TAO).
Identification of Positively Deviant Individuals and Their Exceptional Behaviors
TAO’s newly created Leadership Group was trained by the authors, who served as PD coaches as the process unfolded. The Leadership Group organized a picnic in order to gather ACT consumers together. During this gathering, members of the Leadership Group interviewed their peers on a voluntary basis to ascertain the common social practices and barriers that were contributing to their social isolation. They completed and documented 25 interviews. They determined that the core problem for most was a “lack of meaningful community connections”. They further distilled the core problem into specific elements including: people avoid those who have a mental health condition, and those who have mental illness fear rejection, have no friends and stay home. In addition, social isolation results in poor physical health, compounded by drug or alcohol abuse and not following medical advice. Further challenges include fear of taking public transportation and poor money management, which inhibit participation in community activities.
The unique feature of the PD approach is to “fix what’s wrong by finding what’s right” (Singhal, Buscell & Lindberg, 2010, p.177). In order to do this, the Leadership Group began to search for the exceptions to the rule of social disconnection. These exceptional (PD) performers possess secrets that could be shared with the larger peer community. Through conversations among the ACT staff and the Leadership Group, and by analyzing existing data on member’s employment, housing and interview information, a consensus was reached on ten individuals who were socially active and also involved in volunteer/paid work.
These ten positive deviants were interviewed and observed by the Leadership Group, who then distilled their specific behaviors and strategies to form meaningful social connections. Five key skill areas were identified as being important in enabling meaningful connections to the community – making friends, learning about medications and communicating with doctors, learning about public transportation, communicating daily with family/friends, and finding support when needed to pay bills. Specifically, the following PD behaviors and strategies emerged as being important in ending social isolation:
Positive deviants communicate daily with family and friends using a list of their phone numbers. This induces family and friends to communicate with them regularly.
Positive deviants write down questions they want to discuss with their doctor, including what side effects to expect of medications. This creates a partnership with the doctor and a willingness to listen to the doctor’s recommendations.
Positive deviants are honest and assertive with their doctors about health status, meds, etc. This gives doctors the best information for recommending effective treatments.
Positive deviants have a routine for taking meds, e.g. Bubble Pack; take meds at specific time or after daily routine, e.g. shower, brushing teeth, etc. This makes it more likely that prescribed medications will reduce symptoms.
Positive deviants go to the Port Authority or make a phone call to get bus schedules for different destinations and ask questions about how to use the schedule. This allows access to community venues and to family/ friends.
Positive deviants ask friends and family to accompany them on the bus to social activities. This results in invitations from friends and family to do the same.
Positive deviants always make eye contact with others when speaking with them. This promotes trust and friendly conversations.
Positive deviants smile and use a gentle tone of voice with others. This facilitates on-going conversation and the establishment of trust.
Positive deviants use Payees (a free financial and budgeting resource) when needed to assist them to pay bills on time.
Each PD behavior that was discovered was accompanied by a personal story that allowed the Leadership Group and their peers to understand how the behavior was acquired and practiced. This clarity allowed them and their peer group to practice these behaviors with support from one another.
Here is a typical story of a 50 year old man with a history of severe mental illness who we will call Bobby to protect his privacy. PD Individual Profile
“For many years, Bobby was gainfully employed and had a wife and children. His mental illness became incapacitating and he was institutionalized at the state mental hospital. When the hospital closed, Bobby took up residence in an assisted living facility and received intense outpatient ACT services. Bobby was interviewed because he, unlike his peers, was one of the few ACT consumers to attend meetings regularly and to keep his doctor’s appointments without being dependent on ACT staff for transportation. During an interview, he talked enthusiastically about using public transportation to get anywhere in the city. The interviewer was impressed by his knowledge of the bus system, and Bobby explained that before recovery, he learned the city bus routes to obtain illegal drugs. Now that he was in recovery and clean, he felt that he should be able to do the same to maintain his health, i.e. getting to doctor’s and to his ACT Team service appointments. As Bobby was preparing to leave following the interview, a thick packet of tattered documents bound together by rubber bands fell out of his backpack. He hurriedly snatched the packet and stuffed it back. A perceptive peer who was interviewing him asked what was it was and Bobby replied: “Oh nothing … it’s not important.” It almost seemed he was embarrassed and ashamed to show it. The interviewer persisted gently and asked if he could see the packet and was finally given a chance to thumb through it. Well, it turned out to be a veritable goldmine of information on how to get out and about in the city using public transportation. It contained bus routes, schedules and maps which he had marked with different colored magic markers to plot his outings. He also had weekly and monthly calendars marked with scheduled appointments and trips. Gradually he explained how he used these various documents saying: “This is how I’m able to go wherever and whenever I want to go.”
Bobby has become the transportation guru for his peers and a valuable resource and support for those who are afraid to ride the bus. He was never aware that he was an “expert” until a trained peer listened, observed and probed to discover his uncommon practices to overcoming social isolation.
Members of the ACT Leadership Group wondered: “How many more of these hidden solutions exist right here, right now among our peers?”
Community Engagement and Practice of PD Behaviors
In 2013, approximately forty clients of ACT services attended a presentation and discussion of the PD initiative and the PD behaviors discovered in their own community. A follow-up ACT meeting was scheduled the next week for people to get together and practice these new behaviors. However, only four new consumers joined the effort. After discussing the poor turnout for this meeting, it was determined that there were a number of barriers that prevent the majority of ACT consumers from socializing, even with their peers. Most consumers do not maintain a social schedule and do not travel independently. This makes socializing in the community very difficult.
In order to reach all individuals who receive ACT services, the Leadership Group met with the ACT team supervisor to explore possible options to convening the larger group of ACT consumers. A small budget was designated to support peers in scheduling weekly activities with other ACT members. The peers would connect with socially isolated ACT consumers inviting them to travel to places in the community where they could learn and practice the newly identified PD behaviors. An ACT consumer agreed to convene the group and a Peer Mentor helped organize the logistics and agenda. The ACT Team director and supervisor offered to sponsor a weekly community lunch for consumers. This partnership gave wings for the TAO initiative to grow and for the Leadership Group to get together with their peers every week. In these weekly meetings over a meal, they are able to co-create social activities with participants in which their discovered PD behaviors can be practiced with peers, and then applied to make other meaningful connections in the community. By attending the community lunch, ACT consumers practice travelling there by bus. During lunch they practice social skills such as smiling, eye contact and using a gentle tone of voice. And together they agree to gather for other social events.
In 2015, a community volunteer project was planned so that participants would be able to give back to the community. Giving back to the community was discovered to be a cluster of specific behaviors that socially successful peers practiced to be meaningfully connected to the community. Participants learn PD behaviors by doing. Members of the TAO Leadership Group have taken ownership of spreading the wisdom of their exceptionally performing (positively deviant) peers who have found practical solutions to the social isolation associated with having a mental illness. One member said: “I would like us to eventually form a respite group to support each other in practicing the things we’ve discovered and learned during the past two years. We are well on our way to doing it.”
In Conclusion
Peer support among those with mental illness is recognized as being vitally important to a person’s recovery, i.e. living a full life. The PD approach provided a catalyst for people struggling with mental illness to self-organize, support each other, and learn from socially active peers about how to connect in a meaningful way with their communities. The two Positive Deviance applications, one at a drop-in center and the other with consumers of an ACT team, have shown that a PD approach is an effective strategy to assist people with mental illness in finding existing solutions from peer “experts”.
Figure 1: PD Training for the ACT group
Figure 2: PD team at New Horizons with the 'Busy Bees' information displayed on the wall
References
Allegheny HealthChoices, Inc. (2015). Moving Forward with Community-Based Recovery: Five Years After the Mayview State Hospital Closure. Allegheny County Department of Human Services, Office of Behavioral Health, Pittsburgh, PA.
Parks, J., Swendsen,D. & Singer,P., Foti, J.E. (2006). Morbidity and Mortality in People with Serious Mental Illness. National Association of State Mental Health Program Directors Medical Directors Council. 66 Canal Center Plaza, Suite 302, Alexandria, VA 22314.
Prince, P.N, & Prince, C.R. (2002). Perceived stigma and community integration among clients of assertive community treatment. Psychiatric Rehabilitation Journal, Vol.25 (4), 323-331.
Rosen, A., Mueser, D.T. & Teeson, M. (2007). Assertive community treatment – Issues from scientific and clinical literature with implications for practice. Journal of Rehabilitation Research and Development. Vol.44, No. 6, 813-826.
Singhal, A., Buscell, P., Lindberg, C. (2010) Inviting Everyone: Healing Healthcare through Positive Deviance, Plexus Press, Bordentown, New Jersey.