Direct responses from fliers were limited compared to the vast number distributed; however, once with individuals who did respond we were able to use strategies from our curriculum and personal experiences. Once the relationship was built, they became willing to go on outings with us. In several cases, providing one-on-one services resulted in a massive increase in the participant’s willingness to partake in therapeutic activities available to them in the community. It also resulted in very good training experiences for the Specialists.
The process of partnering with service agencies who serve residents living in SROs and Board and Care homes was aided by completing presentations at conferences to gain exposure, and reaching out to agencies via email. In following a one-on-one client we worked with in the community into a board and care center, we were able to support the staff, help the individual maintain housing, and receive a referral from that board and care. This was one successful strategy to in reach to a board and care; however, it suggests that over time we may be able to have a significant impact in some board and care settings by following the strategies outlined here.
The time spent in inpatient settings and outreaching to the homeless involved opportunities to plant seeds to let message receivers know they were not alone. Once homeless individuals move indoors they may end up in SROs and board and care homes. Additionally Specialists developed counseling skills sharing their stories of hope to those who either are not willing to receive services or who are waiting for services.
Learning Question Two: How does a place-based outreach program by trained peers to public locations in the community, such as parks, coffee shops, and libraries where otherwise isolated persons may go, be effective in reducing social isolation and increasing participation in mental health services among isolated adults and older adults with serious mental illness?
We found that although two of the specialists had completed Best Now, what we were doing in asking peers to be mindful and open about experiences with psychosis was so different, that we functioned not only as a service but also as a training program. Balancing being open and public about “psychosis” with teaching professional and administrative skills was a focus. Thus, outreaching into the community as a team and passing out flyers was a necessary step that was very supportive to the Specialists as it did a lot to build confidence and decrease stigma associated with “psychosis.”
Training peers as Specialists did a lot to add to the structure in their lives recreation. Increasingly they were able to model being open and talk about their message experiences and enjoyed initiating relationships in the community. By demonstrating their own gains made they passed on hope to those they served. This was especially meaningful in the homeless community. Several Specialists were continuing to struggle with housing issues throughout the period of the grant. Spreading hope, their heroism and a cultural view of the issues of “psychosis” prepared them to be presenters at agencies and readied them for group work.
In our intensive one-on one contact with a participant we were able to help her get out into the community in outings, but it often involved helping her with needs. Socialization was often stalled by signs of message crisis. Other one on one efforts were meaningful, like playing tennis. However, outreach efforts to locations where message receivers might frequent primarily resulted in high functioning “psychics” establishing contact, not isolated message receivers, demonstrating the need for other strategies to make contact with message receivers.
There was a homeless individual who came to weekly training sessions held on Thursday nights. He was astounded by how helpful the group had been for him, though he did not become a regular attendee due to the fact that we met late in the day, this is an example of some of the outcomes we were able to create trolling through the community with cultural stories of hope. However, to really move forward as professionals and obtain a regular clientele, once the staff developed as a team we moved to providing presentations at conferences and agencies and people who responded to our outreach and in reach efforts. We learned to use our stories in presentations and transitioned to using group facilitation skills gained through training to individuals in the community. This resulted in receiving more referrals to work with people one-on-one.
Learning Question Three: How does a telephone- or telephone- and internet-based program that provides social interaction and individual support reduce isolation among adults and older adults with serious mental illness and lead to greater in-person social interaction over time?
Using phones is an essential component of reducing isolation. Use of phones first began during outreach. We received warm line calls, many from individuals who considered themselves “psychics” in the community who were interested in talking but not interested in services. The fact that many were not able to respond to flyers is a great indicator of the level of isolation message receiver’s experience. Many message receivers in crisis have “delusions” with regard to phones. We made contact in agencies and followed up using one-way phone contact helped maintain relationships. Our efforts helped reintroduce social relationships through phone contact.
During this process of reintroducing the phone to message receivers, our phones became very important in the training and development of staff as professionals. We went out in teams and the teams often sought supervision and support from the Program Manager. Seeking out support in a responsible way helped Specialist to develop professionally and as team members; it benefited the community as participants had a clear sense there was a team behind the support they received. Specialists modeled the use of phones even early in training.
Specialists began running groups in the community and were expected to retain participants by calling individuals to maintain participation and gently move the group participation towards individual support. Connecting with individuals over the phone helped pave the way for our team to increase a sense of social support and promotion of social support. Responsible phone contact complimented by caring greeting card outreach helped to maintain group participation and helped groups to grow and thrive. By keeping in phone contact several individuals who were receiving our one on one support were interested in coming to the open Thursday Night Training and had a major increase in receptiveness to social communication and contact.
We explored strategies of making a Facebook page, but found that for isolated message receivers, one way phone contact was more pertinent and important to pursue. Our warm line stayed open, but remained relatively unused.
Additional recommendations to support isolated message receivers: We developed a strategy of reaching out to less isolated message receivers who might be interested in taking a training to help them learn to reach out to other message receivers. We did this in part to add to the training of our Peer Specialists and to help individuals specialize in supporting those with special messages. Advertising in Alameda County’s Pool of Consumer Champions (POCC), the Hearing Voices Network, and through the PEERS website we held a twelve week training series aimed at how to identify the universal aspects of their message experience (or “psychosis”) and to teach and promote coping skills. Many less isolated individuals benefit astronomically from this endeavor. Additionally, individuals who get introduced to the Special Messages project in the community have the option of coming to this training group.
Public presentations at conferences and at provider sites are an extremely important strategy to reaching in towards people who are isolated in their treatment by the fact “psychosis” is not always seen and dealt with in community agencies and treatment services. Agencies who reach out to those isolated, would have their efforts greatly enhanced if they had components that acknowledged and addressed the concerns of those who have experiences with “psychosis.” A massive anti-stigma campaign within and outside the system supports isolated message receivers in connecting socially and for treatment. As there is a sense of self help in addictions traditions, a similar mentality in “psychosis” treatment will be beneficial to message receivers. Efforts among the homeless remain extremely important as Specialists in this project have stressed and demonstrated.
The goal of the program is two-fold:
- Help those individuals isolated by “psychosis” become motivated to associate with each other and seek services that can help them integrate and engage in community activities;
- Use an experienced Program Manager and an innovative curriculum to prepare peer specialists who have lived experience with “psychosis” to use that experience as an asset.
The vision behind these goals is that service teams might one day be staffed with individuals who have lived experience with “psychosis” who can take the lead in connecting with those isolated by “psychosis.” Ultimately we want to plant the seeds for creating an inclusive, local culture that teaches people to accept and thrive in spite of their message experiences, where message receivers work to support each other in succeeding in the community. In doing this the stigma of “psychosis” will be markedly reduced and voluntary participation in the Hearing Voices Network will flourish.
PROGRAM DESIGN: The program is designed to train message receivers to become community builders and to help build a sense of community for message receiving participants. The essential program components involve:
- Training about universal components of “psychosis” and coping skills;
- Community outreach to build visibility and decrease internalized stigma;
- Teaching team building skills;
- Gaining necessary administration skills;
- Distributing flyers and selling the program peer to peer;
- Providing phone warm-line and tele-support, particularly phone outreach to maintain participation;
- Teaching public presentation and story-telling skills;
- Training in group facilitation that involves personal disclosure;
- Providing public presentations to service providers and family members;
- Providing peer-to-peer support via group facilitation; and providing peer to peer support with individuals in the community in teams, using a survey to evaluate the impact of our work;
The program helped normalize the trauma-sensitive strategy of going toward experiences that make up “psychosis.” In going towards these experiences (as opposed to just suppressing them) trauma, spiritual, cognitive, behavioral and collaborative skills can be learned to better manage them. When groups are led by individuals who demonstrate mastery of such skills, participants can become more motivated to reduce self-stigma and join in community.
In the mainstream system of suppression, often message receivers learn that it is not safe to discuss or socialize over their symptoms because usually they will get punished for doing so. Learning that it is safe to discuss with others who have been through similar experiences is an extremely important step towards drawing people out of isolation and inactivity. And finding ways to do this that teach recovery and social rehabilitation skills is something that the curriculum helps with.
- In advertising for qualitative interviews with Stanford researcher, a respondent reported that the groups had revolutionized his sense of self in a way that he couldn’t wait to discuss more.
- In the field study, a client who repeatedly refused to have anything to do with our outreach, had been inexplicably helped in a revolutionary way by that individual’s parent. This individual, who now openly communicates with us, went through an unspoken transformation.
- An individual who was nearly mute, internally preoccupied, restless, and angry in our Thursday Evening training, heard the leader quote a rap lyric to teach a concept and started to talk. Hearing the rap lyrics started the process of coming out of isolation in this context.
- Services fit right into what already exists in a way that empowers and motivates people. We followed a one-on-one participant into a board and care environment and were able to support the staff and started receiving other referrals.
Strategies to reach in take a great deal of time, but teaching others that they are dealing with a culture bears the potential of impacting these environments. This works planted seeds in the homeless and hospitalized communities about message culture.
We recommend training with a curriculum that redefines experiences associated with “psychosis.” Along with training there are four phases to implement this project.
Phase One: Engagement:
The Program Manager works extensively on team building and maintaining professional expectations and boundaries. The team of Specialists gets trained in strategies on how to become visible in the community by going into public spaces, learning where services are, and initiating conversations with service providers. Moving around the community as a team is very important as it initiates willingness to be visible as message receivers. A collaboration with the Hearing Voices Network meeting should be established.
Phase 2: Outreach
During the outreach phase we recommend that trainees start to represent their cultural communities and learn presentation skills with ongoing team building. We also encourage the team to create a flyer that can be handed out in the community. Adequate time should be given to support a trainee to open up with their stories about “psychosis.” After this comfort level is attained, trips into the community can start to involve personal conversations with people explaining a cultural view of “psychosis” to individuals in homeless communities. At this point it is recommended a warm line be set up to take in calls and trainees can start talking over the phone with people who call in. It is also recommended during this phase to start presentations at conferences and to peer-friendly organizations.
We recommend bringing in peer leaders to review the curriculum who can help the trainees start to use personal stories. It should be noted that initially trainees may deny having any experiences of “psychosis.” Creating a group in which the majority of the group is talking openly can help support trainees to open up. Professional administrative skills may need to continue being a focus.
Phase 3: Peer-to-Peer
After the Curriculum is completed with peer leaders, inviting in community members gives the trainees the opportunity to start becoming hosts for the newcomers. Now they can take the leadership and start calling participants to maintain their attendance and offering one on one services to them.
The next four months can involve one-on-one relationships outreach. We recommend that outreach involve traveling into the community with phones and learning to relate to peers under the tutelage of the program manager who can support assessing for danger and maintaining boundaries over the phone. Additionally as agencies respond to invitations for presentations for service providers, trainees are able to start negotiating with agencies to invite them in to run groups. Trainees can start providing groups under the tutelage of the management team and can continue to outreach to homeless individuals when not running groups.
Phase 4: Field Work
Upon graduating people from the Thursday Night training, the curriculum can be successfully run by the trainees who might take turns sitting out to perform other duties. Newcomers can be welcomed in to the training.
The final four months of the training involves
- running groups and outreaching to individuals,
- following message receivers into board and care homes,
- completing groups more independently in agencies; and,
- outreaching for more one-on-one participants.
During this time increased phone contact with participants is advisable and beneficial in supporting their connection to a social support network.
It is likely that Specialists through attending trainings, performing outreach, providing one on one with participants will show interest in working in the field of mental health and trained individuals can be supported in looking for new job opportunities. Agencies can fund ongoing groups or part-time work can be available to those who can’t find work on the service team.
This program worked with individuals who have experienced “psychosis” across cultural divides. Staff were selected to be inclusive of youth and elders; male, female and LGBT2S individuals; we provided cultural representatives from African American, Caucasian, Latino, Chicano, Caribbean and immigrant communities. We made a specific effort to include Spanish speakers, homeless, individuals with a history of incarceration, and those with differing spiritual backgrounds including individuals accustomed to working with natural healers. This broad reach was by design and resulted in the development of a team with a wide array of experiences and cultural determinants. The resources on our team to maximize inclusion in a very diverse target population.
The target sub population sought to be effective was with people who had experienced “psychosis” and were willing to talk about it and receive acknowledgement for belonging to an oppressed culture that often does not get recognized. Once isolation is broken through and people are invited to be open and aware of the nature of “psychosis” participants will usually become motivated, like the Peer Specialists, to improve their social circumstances, enhance their social networks or engage in social rehabilitation. Meeting people where they are at, even if in treatment bring the best results.
In addition to message receivers, service providers and family members were significantly served. Family members reached out to advocate for services for their younger message receivers, and worked well within the family support group mode.
The majority of referrals came from successfully partnering with providers who were interested in having a series of groups for their clients. In particular, These groups are most successful when participants are already in program or the hospital and can chose to have these groups in addition to other services. Groups are most successful when there is support from the agency. Establishing collaborative relationships with the providers is an important strategy.
Consumers may be included as collaborators by hiring local peers, and advertising through with consumer advocacy groups such as the Pool of Consumer Champions for project jobs and to participate in the peer facilitator training which can be comprised of providers and peer leaders.
Providing presentations, workshops at mental health focused events will support broadening collaborative efforts. Examples from this project include the ACNMHC 25th Anniversary, the Spirituality Conference, CASRA, CIIS Spiritual Emergence group, Heart and Soul Consumer group, and the POCC Conference.
Family members and family advocates mostly from BHCS service provider PREP collaborated with the project to enhance the success of participants.
CULTURALLY RESPONSIVE STRATEGIES:
This work is essentially an effort to acculturate individuals who have had experiences with “psychosis” across diagnostic categories and cultural divides, teaching them to belong to and identify with universal components of these experiences. The author of the curriculum used during the Thursday Night meetings, Tim Dreby, has identified eight components of “psychosis” that lead to common processes and experiences. These are experiences that in a safe setting message receiving individuals can relate to. Below are key elements learned through the implementation of the project that address the culture within message receiving individuals and communities:
- By emphasizing what they have in common with others instead of how different their experiences are individuals can work with each other to emphasize solutions and live successfully with some degree of social rehabilitation.
- Using peer role models and bringing people together in various stages of recovery and a variety of walks of life is important so that message receivers can see that what is happening to them is in fact happening to others in different cultural contexts. The ability of a worker to say: “I’ve experienced this, in fact I still experience this,” is so essential to motivating individuals who are in isolation to try new things and make the monumental efforts to promote their own social rehabilitation. The challenge is that each participant has unique cultural characteristics. The ability to connect with others by going towards “psychosis” and making collective meaning of it is such an important need that doesn’t exist in treatment as we currently engage in it.
- A great deal of isolation will be reduced if we can destigmatize the collection of associated experiences and add this to our treatment protocols. Additionally, it might be noted that the material was developed among individuals who largely populate board and care homes and SRO facilities and was rearranged based on the learning that happened from the participants in the project.
Effectiveness of Strategies
This strategy’s effectiveness is proven through the number of participants reached and evidence of personal growth witnessed by the project staff and providers. The simple message that the problem needs to be redefined and that isolation is largely caused by having the experiences of “psychosis” coercively suppressed resonated with many of the participants.
54 individuals from out in the community participated; 9 people were served one on one; 45 people participated in the groups, in addition 26 people were willing to participate in the field testing conducted.
The success rate is demonstrated not only by these numbers but also by qualitative comments and individual experiences with satisfied individuals who were willing to open up and share their most private experiences. Much of this happened in confidential groups and involved the telling of stories of Special Messages Crisis, the most powerful healing determinant, in my opinion, and the hardest thing to document. Additional evidence of effectiveness are:
- Peer specialists grew in their ability to be transparent about their “psychosis” experience while at the same time making gains in being professional, public and less isolated is a testament to the practice.
- Workers were encouraged to take their learning and move forward in career directions they chose themselves and all were able to sustain career growth in terms of volunteer or getting hired. One obtained a full time position outside the field, and, then a year later got a full time position in the field. Another got hired on at PEERS. One was hired within six months at a full time position with Abode Services. And finally one was hired into two security positions, but remains a paid leader in the BAHVN group.
Staff grew in their ability to work with each other across cultural divides, learn to coordinate their roles, trust and cooperation has been significant.
EVIDENCE-BASED AND COMMUNITY DEFINED PRACTICE.
Much of the success of this as a treatment strategy has been observed by the successful running of groups at Highland Hospital Outpatient Psychiatric Unit over the past six years and the known successes of the Hearing Voices Network across European Nations (including Australia and New Zealand.)
A problem oriented path for counseling theory as has been started by the eclectic approaches of various evidence based practice movements (motivational Interviewing, WRAP, IPS Employment Model, Housing First, PET Support, and DBT.) Study of the evidence based DBT has been a large personal motivator for writer to create the curriculum that seeks to reconstruct and redefine “psychosis.” Making the curriculum both trauma and spiritually sensitive is part of the work, much as Marsha Linnehan has done with DBT.
Another major aspect has been pioneered by the Program Manager, which involves a training program that teaches professional development to individuals who have experienced catastrophic loss, trauma and isolation as a result of their special message process. Much of this is built on strategies for professional survival which resulted in enormous growth for our Specialists.
There was significant work done to make peer support a best practice that has influenced the hiring and training of the Specialists. The Grant writer has been through WRAP and PET provided by Mary Ellen Copeland and Lori Ashcroft and seen the power of “I am the evidence,” stories that serve to motivate not only the audience but also the speaker. The Program Manager implemented the very important community practice of reflection.
Measures of effectiveness: Provide quantitative and qualitative data that show the effectiveness of the strategies. Include assessment tools and measures of effectiveness and data sources used.
We made a formal effort to measure success qualitatively and quantitatively by utilizing a Stanford researcher who sought to support us. Initially, the qualitative interviews that would have involved 1-1/2 hour sessions reimbursed with twenty dollars resulted in only three responses after dispersing fliers throughout the people we supported. By the time we observed that this response was not going to give us an accurate reflection of our work we decided to send out a survey to those who participated in events to let them identify how they were positively affected. Unfortunately, in part because of the intense amount of work that piled up completing the field testing and closing down the effort, this effort wielded only 19 responses, but we still feel this is significant. And the results and survey are duplicated in Appendix A.
I does stand to be noted that it was observed that many message receivers had an aversion to completing the surveys. The surveys were seven pages long and appeared to be great measures, however, some message receivers may have an aversion to filling out an entire survey because of a variety of reasons that include focus and tolerance of the task and perhaps mixed feelings about or willingness to be part of a study.
It is also arguable that the numbers in terms of the amount of participants and the success and increasing demand for the service that is documented above is a powerful measure of our success. We have worked hard locally and learned that the best way to battle the self-stigma is to provide groups in addition to services that are otherwise being applied and follow up with one-on-one support. We have learned that we can train amazing individuals who can develop and socially rehabilitate and effectively cut through the stigma and develop special relationships. We feel they would be an excellent addition to service teams.
Additionally, I would argue that the qualitative data, which includes private personal stories heard, might be considered location based learning. Indeed if one is to read this program design and consider the places that received our outreach and our responses to the specific learning question, I’d argue that one gets an important view of the interplay between the local economy, the State’s laws, the county agencies and local businesses. I feel this interplay impacts the way that many message receivers get into institutional and depraved circumstances. This fits with private stories that I have heard in my work with Highland Hospital.
Let this be a platform in which I advocate for location-based learning. Consider how we hired individuals with lived, on the ground experience and we let them lead and represent their local experiences and culture. We listened and they took us to work with the homeless and into their communities. I believe this helped empower them to heal and it provided this grant writer with even more qualitative understanding of the location.
When I contrast the work of the HVN in New Zealand or England where the movement has vastly changed lives in undocumented manners, I think that it is important to have a project such as this. Our project drilled down and consider the differences in housing availability and the hefty reality of local homelessness. In a county with particularly high numbers of message receivers cycling through a perpetually crowded PES, we considered local factors that are needed to get into board and care homes and SRO’s. We found that we need to work through agencies if we are going to reach those truly marginalized in this economy. If we develop these resources only outside mental health agencies and only in early intervention programs, there will be a much larger underserved population that will languish and stagnate.
I’d argue the proof lies in the reality of the location, not in an artificial, mobile money-making laboratory.
Finally our two field tests yielded strong and supportive results. Out of 26 attendees, there were 11 providers from: HHREC, BACS, PREP, the Liberation Institute, Telecare, La Familia, Center for Family Counseling, and FERC. We also hosted 10 consumers with a variety of affiliations, and 5 family members. We received the most positive feedback from Providers who were primarily complimentary and concerned about whether these services will be able to stay in the community, given the limitations of the grant. Consumers had a little more to say and were a little more critical, wanting to see the information inserted into schools and church settings along with being taught to providers. And family members wanted scientific proof and to see the service expanded to include hospice programs.
See Appendix A for positive evidence based results of 19 individuals surveyed.
RECOMMENDATIONS FOR PROGRAM REPLICATION
To replicate the Special Messages project it’s recommended that there are three leadership roles: one Peer Support and Approach Trainer; a Lead Specialist; and one Administrative Project Manager. The leadership team should work under a Director who is there to support and hold meetings helping to communicate and balance their roles. Additional considerations are:
- Differentiation of leadership roles from the beginning
- Respect for the need for working as a team is important
- An ability for each to validate and support each other The leadership team needs to be able to share validation and challenge strategies for the Outreach Specialists. A sense of balance so that the Specialist get challenged to adapt to a professional environment but also feel seen and understood as to where they are.
- The leadership team needs to meet and strategize teaching: how to be a vulnerable and authentic peer supporter, and how to uphold professional skills standards, boundaries, assessing for danger, and expectations.
Time needs to be taken for each hire and each leader to develop a relationship and understand each other’s’ skills and strengths. And it needs to be clearly understood that time is necessary to train the staff to be visible in the community as representing “psychosis.”
If we had chosen people who were already healed and degreed, it may have limited important aspects of the peer element.
Additionally, it stands to be noted that we approached all team relationships with a failure is not an option attitude because of the vast amount of social vulnerability that Specialists are likely to start out with. This as a cultural trait that is often the result of a background of catastrophic loss or hardship. Relapse into Message Crisis needs to not result in job loss but wellness time off and support.
- Too many peer specialists who have lived experience with “psychosis” and serve on teams end up in extremely compromised and difficult circumstances. They may fail due to stigma and power struggles. They may have an uncanny ability to connect with other message receivers and get targeted for this. Supportive training is essential opportunities to be vulnerable without reprise. Peer Specialists referencing their struggles with messages and demonstrating to community participants that this kind of stress can be authentically managed and overcome. Training opportunities can be seen as important professional development opportunities and sends a message to the trainees of commitment to them and can help support team development. Training and team development are necessary before the implementation of services.
Roles and Responsibilities:
- Oversee the search for isolated individuals who have experienced “psychosis” via interfacing with and outreaching to community agencies
- Uphold a sense of professional expectations for the project that helps staff develop and reach their full potential
- Adjust the initial vision of the program so that it reflects the strengths of project personnel and the community response.
- Create innovative, strength based professional development trainings that help individuals work with each other in a diverse work setting
- Responsible for implementing disciplinary action so that employees have the opportunity to optimize their professional capacity in a safe environment.
- Responsible for overseeing and training for time tracking efforts and communicating with business manager over payroll issues
- Document and maintain bi-monthly individual supervision with Outreach specialists to assist with professional development.
- Able to use and provide supportive feedback for presentation skills.
- Able to track the budget and make decisions about where and when resources will be allocated
- Organize an office and lead documentation efforts aimed at recording outreach efforts, group participation, and individual support services.
- Create outreach strategies to help market the project
- Create and disperse flyers that can prompt engagement
- Lead safe groups in which stories of experiences in “psychosis” can be demonstrated and reflected upon in order to prompt others to tell stories about their experiences in “psychosis”
- Teach group facilitation Skills
- Shadow training and lead group supervision.
- Ability to accompany Outreach Specialists and provide leadership support.
- Seek feedback and support and work collaboratively with the Approach Trainer
- Exemplify professional conduct and communication respecting all team members and their diverse backgrounds.
Roles and Responsibilities:
- Responsible for knowing and be able to teach and adjust the curriculum in training groups that involve the Outreach Specialists and Community Collaborators
- Use and exemplify use of their own story in working mutually with Outreach Specialists and Community Partners
- Travel with the Outreach Specialists and model good boundaries, yet transparency, authenticity, and mutuality in Peer Support
- Provide weekly individual supervision that is supportive but that upholds the professional expectations set by the Program Manager
- Support and help develop Specialists innovative ideas and represent them in meetings with the Program Manager and Director.
- Create quantitative and qualitative means for measuring the success of the program
- Work collaboratively with Program Manager to represent concerns of the Specialists yet have a willingness to support and enforce professional expectations created by the Program Manager.
- Help problem solve with regard to disciplinary actions and help make sure professional development occur
- Lead presentations aimed at educating providers, residential providers and a wide array of community partners towards a cultural view of “psychosis.”
- Seek mediation and function as a mediator when staff conflicts impede the progress of the project
- Provide and lead safe training sessions aimed at reconstructing and telling stories about experiences with “psychosis” exemplifying leadership and meaningful reflection.
- Inspire individuals to create innovative ways to connect with individuals when they are in “psychosis”
- Help address diversity issues in a fair and equitable manner having respect for differences.
- Responsible for writing project reports and overseeing writing projects associated with our marketing campaign.
- Responsible for knowing the local system and helping Project Manager make contact with individuals who can make events happen.
- Work with Project Manager to establish safety, structure and rules that are appropriate for a diverse team.
Lead Outreach Specialist:
Roles and Responsibilities:
- Familiarity with the training curriculum and a willingness to take leadership
- Competence with administrative duties like TT cards and travel reimbursement forms
- Demonstrated cultural competence and ability to assert needs of self and others
- Ability to participate in leadership team and trainee team: knowing who you are as a team member
- Assist with completing measurement and necessary paperwork
- Developed public speaking, group leadership abilities, and proven ability to manage boundaries in one-on-one relationships
- Curious to learn more skills and develop supervisory skills
- Willingness to reflect and represent lived experience with “psychosis”
- Ability to participate and contribute to training that seeks to redefine psychosis
- Able to oversee phone communications and complete associated documentation
- Problem resolution skills
Roles and Responsibilities:
- Willingness to reflect and represent lived experience with “psychosis”
- Ability to participate and contribute to training that seeks to redefine psychosis
- Learn administrative skills and function as a collaborative team member
- Accept the professional direction of the Program Manager
- Learn and teach peer support outreach with support Approach Trainer
- Ability to meet professional expectations while learning to authentically relate your story and hardships
- Support Community presentations with an ability to represent personal story
- Structure own time and use phone to track participants and encourage them out to events
- Invite participants eventually to communicate about “psychosis” and come to support groups aimed at that very task.
- Learn to Lead support groups and outreach to individuals on a team
- Required qualifications, certification and / or licensure
Project Manager: Strong employment history that includes some management experience: Bachelors or Master’s Degree.
Approach Trainer: Strong Employment History, experience leading safe groups with message receivers, familiarity with the curriculum, Peer Support training, Licensure level training on counseling theory.
Lead Specialist: Completion of training program that uses the curriculum, ability to lead groups, public speaking, interest in developing supervision skills, AA degree preferred, WRAP training a plus
Specialists: Peer Support Training; knowledge of local services, evidence of volunteer involvement in recovery services and significant recovery efforts
COLLABORATORS NECESSARY FOR REPLICATION This work has pioneered the marketing necessary to get invitations into collaborating agencies. A very important strategy for reaching isolated message receivers is flyer outreach strategies and the use of phone contact. Although these strategies do not result in high levels of voluntary referrals, particularly in the north county, they are good for training and destigmatizing individuals. There is a high degree of self-stigma and a high level of hardships that prevent many isolated individuals from voluntary responses. That said, some of the most successful one-on-one partners came through voluntary means, meaning that this is still a worthwhile endeavor and a great way to train Outreach Specialists.
All stakeholders should be included in outreach efforts: providers, consumers, and family members.. Service agencies are interested in receiving presentations and often will extend an invitation to run groups.
Partnerships with service agencies can create successful outcomes involving families. The Program Manager for this project was extremely competent in this area and it is recommended that she be independently reached out to for consultation with regard to not only how to train trainees but also how to include family members.
Significant support can be gained from consumer advocacy groups such as the POCC. We also used consumer and consumer/provider conferences to get the word out.
Best Now is a resource for conducting presentations and providing initial training. The BAHVN provided training and opportunities for our graduates.
- Recommendations for resource, facilities, and infrastructure requirements needed for support:
Technology and equipment needs
- three computers each with a desk
- one printer.
- a laptop and projector
- access to a conference room.
- a locking filing cabinet to remain HIPPA compliant.
- Transportation support (Bus passes, Clipper Cards, mileage reimbursement)
- Systems and services needs (e.g., billing, interpreter, etc.)
Partnering with an agency, such as PEERS or others can support the availability of resources (i.e.; internet services, ITT specialist, administrative forms, etc.) Working with an already established finance department is also suggested. Include a Spanish speaking staff member for interpretation skills. Cell phone service with unlimited data plans.
- Budget requirements
This program could operate on a grant budget of approximately $275,000.00-300,000.00 yearly. The primary costs would go to the salaries of the three leads including benefits and might involve the Specialists graduating to a salary increase.
- One – time costs (e.g., implementation and training)
Powerpoint Books for Training Manuals Training investments for Specialist that include CPR and First Aid, Compass Point to improve administrative skills, and Hearing Voices Network and WRAP Additionally Specialists found the practice of traveling together and making the team visible to the community services and tracking those services to be very valuable. This required some expense without creating immediate results but was thought to be important for team development. Our Program Manager used her own books on Team Development during this time. I am aware that more money could’ve be spent on team development, but our Program Manager was very gifted, talented, and resourceful. Additionally small issues like purchasing transit cards is a consideration.
- Other resources required for infrastructure support
POST-INTERVENTION SURVEY: ALAMEDA COUNTY SPECIAL MESSAGES PROJECT
Description & Methods
In order to better understand the impact of client participation in the Special Messages (SM) project, we administered an online survey to clients following participation in one or more SM activities (including trainings, support groups and one-on-one consultations). The survey combined novel and adapted close-ended questions as well as optional open-ended questions. Attempts were made to reach both past and current SM clients as well as clinicians and family members.
In total, 18 participants completed a post-intervention survey regarding their experiences. Participants included one clinician, one family member, and one friend in addition to 15 peers. 11/15 peers were directly involved in SM groups and/or 1:1 meetings and the remainder had attended a training or workshop. See Table 1 for additional participant demographics.
Survey Highlights: Impact
For the full sample, including participants who had attended a presentation or training but not participated directly in a SM services, the majority of participants reported improvement in one or more community engagement or recovery domain. Individual items ranged from 6/17 (35%) of participants reporting a diminished sense of “not fitting in” to 13/17 (76.5%) reporting increased communication or connection with friends and/or peers. See Table 3 for full results.
Of those participants who were involved in a Special Messages group and/or met one-on-one with SM staff, 10/10 (100%; 1 missing) reported improvement in one or more community engagement or recovery domains. For example, 9/10 (90%) reported increases in time spent “talking to or connecting with friends or peers” and 8/10 (80%) increased time “reflecting on [their] experiences of psychosis in a helpful way.” Only 1/11 (10%) participants reported negative changes post-contact (including increased loneliness and feelings of not fitting in). See table 4 for full results.
Survey Highlights: Comparing Special Messages Peer Staff with Non-SM Community Mental Health Staff
While the differences in participants’ experiences of the recovery-orientation of SM staff and non-SM community mental health staff did not reach statistical significance (almost certainly due to the sample size; data was missing for 8 participants), ratings of SM staff exceeded those of non-SM staff on every item (e.g. “staff see me as an equal partner;” “staff believe that I can grow, change and recovery;” “staff have helped me to better understand my experiences of psychosis”). On the 4 staff-focused questions taken from the American Association of Community Psychiatry’s Recovery Oriented Service Evaluation (AACP ROSE), 20-30% (2-3 out of 10) of participants consistently listed non-SM staff as never or rarely engaging in recovery-oriented behaviors, while no (0%) SM staff were listed as never or rarely engaging in the same behaviors. The highest ratings were assigned to SM staff at consistently higher rates. For instance, 6/10 (60%) participants listed SM staff as “always or almost always” ‘seeing them as an equal partner’ whereas only 1/10 (10%) gave non-SM staff the same rating. See Table 4 for additional details.
Qualitative (Open Ended) Responses
All comments regarding additional perceptions of participation in SM activities are listed in Tables 5 and 6. Overall, open-ended responses suggest that at least some participants felt that SM activities increased their sense of self-worth and validated their experiences in additional to more interpersonal and/or community and treatment-focused effects.
Limitations & Conclusions
Participant sample size was limited and it is consequently unclear how the responses reported here generalize to the full population of clients who came in contact with Special Messages (SM). It is also possible that participants with a more favorable impression of SM were more likely to complete the survey. In addition, our survey was cross-sectional and lacked a control group limiting our ability to make strong claims about intervention effects. We nevertheless see the survey as helping establish the feasibility of the SM project and participants’ favorable views.
For those who filled out the survey, results suggest that SM was generally perceived as effective in reducing isolation and increasing personal and community engagement and well-liked by participants. In addition, comparisons between SM and non-SM staff using the Recovery Oriented Services Evaluation (AACP ROSE), suggest that SM staff were more likely to be perceived as strongly recovery-oriented than non-SM staff.
|Asian American||16.7% (3/18)|
|Receiving SSI/SSDI||50% (9/18)|
|Age (mean & range)||50.6 yrs (32-62)|
Table 1 Participant Demographics
|Question||Worse than Before||No Change||Better than Before|
|Getting out of your room, apartment, the shelter, or board and care home (for example going for walks, listening to music in the park, going to the library)||0% (0/17)||53% (9/17)||47.1% (8/17)|
|Talking to or connecting with members of your family||0% (0/17)||64.7% (11/17)||35.3% (6/17)|
|Talking to or connecting with friends or peers||0% (0/17)||23.5% (4/17)||76.5% (13/17)|
|Feeling like you’re part of a community of people with shared experiences||0% (0/17)||47.1% (8/17)||53% (9/17)|
|Feeling optimistic about the future and open to explore the other services that exist in the county that I didn’t previously consider||11.8% (2/17)||29.4% (5/17)||58.8% (10/17)|
|Taking care of yourself (good hygiene efforts, doing healthy things for yourself)||0% (0/17)||47.1% (8/17)||53% (9/17)|
|Feeling lonely||6% (1/17)||53% (9/17)||41.2% (7/17)|
|Feeling like you don’t fit in||11.8% (2/17)||53% (9/17)||35.3% (6/17)|
|Reflecting on your experiences of psychosis in a helpful way||6% (1/17)||41.2% (7/17)||53% (9/17)|
Table 2 Impact of Special Messages (Full Sample)
|Question||Worse than Before||No Change||Better than Before|
|Getting out of your room, apartment, the shelter, or board and care home (for example going for walks, listening to music in the park, going to the library)||0% (0/10)||30% (3/10)||70% (7/10)|
|Talking to or connecting with members of your family||0% (0/10)||60% (6/10)||40% (4/10)|
|Talking to or connecting with friends or peers||0% (0/10)||10% (1/10)||90% (9/10)|
|Feeling like you’re part of a community of people with shared experiences||(0/10)||30% (3/10)||70% (7/10)|
|Feeling optimistic about the future and open to explore the other services that exist in the county that I didn’t previously consider||10% (1/10)||20% (2/10)||70% (7/10)|
|Taking care of yourself (good hygiene efforts, doing healthy things for yourself)||0% (0/10)||20% (2/10)||80% (8/10)|
|Feeling lonely||10% (1/10)||40% (4/10)||50% (5/10)|
|Feeling like you don’t fit in||10% (1/10)||40% (4/10)||50% (5/10)|
|Reflecting on your experiences of psychosis in a helpful way||10% (1/10)||10% (1/10)||80% (8/10)|
Table 3 Impact of Special Messages (Group and/or 1:1 Clients)
|Question||Lowest Rating (Never or Rarely)||Highest Rating (Always or Almost Always)|
|SM Staff||Non-SM Staff||SM Staff||Non-SM Staff|
|See me as an equal partner.||0% (0/11)||18% (2/11)||54.5% (6/11)||1% (1/11)|
|Believe that I can grow, change, and recover.||0% (0/11)||18% (2/11)||63.6% (7/11)||18% (2/11)|
|Treat me with respect regarding my cultural background.||0% (0/11)||0% (0/11)||63.6% (7/11)||27.3% (3/11)|
|Helped me to better understand my experiences||0% (0/11)||27.3% (3/11)||45.5% (5/11)||27.3% (3/11)|
Table 6 Recovery Oriented Service Evaluation (AACP ROSE) Responses
|I have more interpersonal involvements|
|Shared stories and peer support|
|Friendly staff and peers|
|My son has been visited by Special Messages. I believe it helped him to feel valued and validated by speaking to a peer.|
|This information was not aimed at me. However, I very much appreciated the message that my clients received from it.|
|I completed the certification course for special message facilitator|
|It helped me to validate my message experiences, as well as help me feel more worthwhile. Like I am so much more capable than I thought I was. It has introduced me to other who understand my experiences. It has given me hope for the future.it has expanded my viewpoint|
|Listening the examples you provided made me realize that I was getting some messages too. It was good because I never thought that way and thought it was just me. It’s good to know that this is something.|
Table 5 Additional Benefits of Involvement in Special Messages (Open Ended Responses)
|I would like to add that I believe that Special Measures is an organization that is extremely valuable. There are studies showing peer to peer contact as a portal to recovery.|
|Special Messages did help to relationships with others, but even more important it helped with self-esteem and relationship with self. It is difficult to overcome internalized self stigma and Special Messages is one of the few approaches that really helps.|
|I’m so glad I was a part of this|
|I really enjoyed the program.|
|I just want to say that it is a good program but you looking in the wrong places for individuals in messages and who are isolated. You need to penetrate the many board and care homes in this county and beyond. There is where you will the people who need this program the most and would respond to it the best. Not in the streets or in the parks, Those people are out and about. But the board and care homes, that is where the peers need the support of peers who understand them. whatever happens, remember my words. Board and Cares and the recently released peers. from the hospitals needs to be the focus.|
|Special Messages has provided an invaluable service to people who receive messages, as well as their families/caregivers. I have witnessed a young man who was completely disengaged except for showing up. After about 4-5 weeks of attendance he began saying hi and making eye contact. I have also witnessed him laughing and engaging with other people more regularly.|
Table 6 Additional Comments on Special Messages (Open Ended Responses)