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Sitting at the same table : participant and family member involvement at the Canadian Mental Health Association… James, Ryanne Apr 30, 2016

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SITTING AT THE SAME TABLE PARTICIPANT AND FAMILY MEMBER INVOLVEMENT AT THE CANADIAN MENTAL HEALTH ASSOCIATON VANCOUVER FRASER2SITTING AT THE SAME TABLE: PARTICIPANT AND FAMILY MEMBER INVOLVEMENT AT THE CANADIAN MENTAL HEALTH ASSOCIATON VANCOUVER FRASERbyRYANNE JAMESBSc (Microbiology & Immunology), The University of British Columbia, 2007A PROJECT SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OFMASTERS OF SCIENCE (PLANNING)inTHE FACULTY OR GRADUATE STUDIESSchool of Community and Regional PlanningWe accept this project as conforming to the required standard …………………………………………………….…………………………………………………….THE UNIVERSITY OF BRITISH COLUMBIA April 2016© Ryanne James, 20163Table of Contents Dedication              4Acknowledgments             5Executive Summary             6List of Figures and Tables            7List of Acronyms             7Section 1: Introduction            8Section 2: Literature Review          10Mental Health Organizations and Participant Involvement     10Canadian Mental Health Association Vancouver Burnaby 2014-2017 Strategic Plan 11Participant Involvement in CMHA Vancouver Burnaby Branch: Models and Principles 13Building the Community for Participant and Family Involvement    14Participants and Family Members for Change      14Section 3: Methods           17Participant and Family Voice Committee       17PFVC Plan for Agency Wide Participant and Family Involvement   19Participant and Family Voice Guiding Principles      20Building Relationships         20Inclusiveness & Equality         20Collaborative Decision Making        21Reflection           21Dialogue           21Action           21Art of Hosting: Participant and Family Voice World Café     22World Café Events Vancouver & Burnaby      24Psychosocial Rehabilitation National Conference     32World Café Feedback Session        32Keynote Presentation at CMHA-VF Annual General Meeting    33Participant and Family Voice Committee: Ongoing Project    35Limitations of Methodology         36Section 4: Findings           39A Shared Vision for Recovery from Participants and their Family Members   39Stigma and Participant and Family Involvement      39Language and Participant and Family Involvement      42Participant and Family Member Led Participant and Family Involvement at CMHA-VF 44Focus on Education         44Focus on Connection         44Focus on a Diversity of Roles        45Focus on Skills and Assets        46Focus on Family          474Participant and Family Voice Committee Considerations     47Funding           47Mental Health          48Time           48Presentation of Materials and Mentorship      49Highlights           49Section 5: Recommendations          51Participant and Family Member Voice Committee Recommendations   51Focus on Connection         51Focus on Education         52Focus on Diversity of Roles        53Focus on Skills and Assets        54Focus on Family          55References            56Appendices            58Appendix A—CMHA Vancouver Burnaby Strategic Plan 2014-2017   58Appendix B— Participant and Family Voice Committee Member Invite   59Appendix C—Participant and Family Voice World Café Vancouver Roles   60Appendix D—Participant and Family Voice World Café Vancouver Agenda  62Appendix E—Participant and Family Voice: Things to Consider    63Appendix F—Participant and Family Voice: Hiring Committee Panel   64Appendix G—Participant and Family Voice: Terms of Reference 2016   65Appendix H—Participant and Family Voice: Theory of Change & Logic Model  685Dedication To Amos and Coco DuffyAcknowledgmentsThe process of community engagement with the CMHA-VF has been a rich and truly rewarding experience.  It has been an opportunity for deep and profound learning in regards to mental health and an opportunity to witness the power of participatory community planning. I would like to thank Ruth MacLennan for her support, knowledge, insight, and guidance throughout the project. Ruth has been an amazing mentor and has worked diligently within the organization to create the space for this work by calling on a vast and capable team of participants, family members, staff and board members. The CMHA participants and peer support workers, Holger, Shareen, Brenda, Jody, Andrea, and family member Gavin, have been the true leaders of the process, stepping up to the challenge of guiding change, taking risks and speaking their truth throughout the process. A special thanks to Shareen, Jody and Brenda who have regularly met with me outside of the Participant and Family Voice Committee to give feedback and ensure that the process has remained participatory and consultative.  Thanks to the CMHA-VF staff members Christine, Janessa, and Katy for their support and contributions.  I would also like to thank Regina Casey for her commitment to an evidence-based evaluation of participant and family involvement. Much gratitude is felt towards SCARP which has made this project possible. Aftab Erfan has provided the groundwork for working, learning, and healing in a place of conflict. Dr. Mark Stevens, my supervisor, has consistently reminded me to explore the relevance of this type of work to the process of community planning. The quality of the outcomes of the World Café process is a result of the experience and capability of the SCARP students who led the facilitation. These include Spencer Lindsay, Tasha Henderson, Kristin Patten, Justin Wiebe, Aaron Lao, Zoe Greig, Emme Lee, and Emma Finebilt. Thank you to Riley Iwamoto for helping me execute the visual layout of the report.  I would also like to thank my family and friends who have supported me throughout this process.  These include Amos Duffy, Coco Duffy, Alix James, Shoshana Frost, Emmily Stephens, Amar Kurani, Miner James, and Fergus McDonnell.Thanks are also due to Mount Pleasant Community Centre, Bonsor Community Center, and the Robert Lee and Lily Lee Community Health Center, for providing the space for rich community dialogue. 6Executive Summary This report is the result of a participatory community planning project designed to ensure that participants and family members of the Canadian Mental Health Association Vancouver Fraser (CMHA-VF) become actively engaged in the decision making, planning, program development, and evaluation for the Agency. The project included the formation of the Participant and Family Voice Committee (PFVC), the development of the Participant and Family Voice Committee Guiding Principles (PFVC-GP), fifteen committee meetings, two Participant and Family Voice World Café (PFV-WC) sessions, a World Café Feedback session, a workshop at the 2015 Psychosocial Rehabilitation National Conference, a presentation at the CMHA-VF Annual General Meeting, and several small group focus sessions. The report reviews the literature regarding the importance of participant and family involvement, a brief look at the previous initiative and workbook designed to promote participant involvement, and explores why these interventions were not successful. The report presents the findings of the PFV-WC indicating that self-stigma, stigma within the Agency, and social stigma are the greatest barriers to involvement in the Agency and advises that a focus on the key themes of education, connection, diversity of roles, skills and assets, and family, will enable the Agency to address stigma to create a community where participants feel empowered to become involved. The findings of the PFV-WC also indicate that the mental health language and terminology is problematic and that work must be done to ensure that participants, family members, staff, and Board members are using the same definitions. The findings of the PFVC indicate funding must be established to support an on-going project to support involvement, significant time should be allocated, people experiencing mental illness must have supported space for contributions, and that materials should be accessible and presented in multiple formats. The report also highlights instances of successful participant and family involvement. In conclusion, short and long-term recommendations specific to the CMHA-VF are presented to promote and sustain participant and family member involvement. 7List of Figures and TablesFigure 1: Participant and Family Voice Committee Terms of Reference 2015   18Figure 2: Participant and Family Voice World Café Poster Vancouver    23Figure 3: World Café Comfort and Creativity       24Figure 4: World Café Facilitator Notes        28Figure 5: World Café Table Papers        30Figure 6: World Café Graphic Facilitation, Session Capture     32Figure 7: Participant and Family Voice World Café Feedback     34Figure 8: Prioritization of Key Themes        35Figure 9: World Café Graphic Facilitation, Theme Capture of Stigma    40Figure 10: Participant and Family Member Blossom of Involvement    46Table 1: Focus on Connection Recommendations      51Table 2: Focus on Education Recommendations       52Table 3: Focus on Diversity of Roles Recommendations      53Table 4: Focus on Skills and Assets Recommendations      54 Table 5: Focus on Family Recommendations       55List of AcronymsABCD—Asset Based Community Development  CMHA—Canadian Mental Health AssociationCMHA-BC—Canadian Mental Health Association of British Columbia CMHA-VB—Canadian Mental Health Association Vancouver/BurnabyCMHA-VF—Canadian Mental Health Association Vancouver/FraserPFVC—Participant and Family Voice Committee PFVC-GP—Participant and Family Voice Committee Guiding Principals PFV-WC—Participant and Family Voice World CaféPSR—Psychosocial Rehabilitation  SCARP—School of Community and Regional PlanningUBC—University of British Columbia 8Section 1: Introduction Healthy and diverse communities provide opportunities for all citizens to engage in and to lead successful productive lives, where people are valued for uniqueness and individuality. Community planners regularly provide access points for diversity such as age, gender, sexual orientation, cultural background, and physical ability.  However, one of the areas that continues to lack appropriate support is mental health. The Public Health Agency of Canada (2014) defines mental health as: “the capacity of each and all of us to feel, think, and act in ways that enhance our ability to enjoy life and deal with the challenges we face. It is a positive sense of emotional and spiritual well-being that respects the importance of culture, equity, social justice, interconnections and personal dignity (Mental Health Promotion, para. 1).Many of the profound social challenges faced by communities are related to mental health. Issues such as homelessness, poverty, addiction, unemployment, and physical health are often closely tied to the marginalization of populations that are experiencing challenges related to unaddressed and unsupported mental health issues. Mental health is a complex and multifaceted topic; however when people are asked what they need to ensure a fulfilling life and the opportunity for recovery, their response is typically simple: a home, a job and a friend (Alexander, 2009). To ensure the health and well being of our communities, planners should prioritize mental health by working to improve mental health literacy, increase mental health supports, and to create communities free from stigma. Mental health issues affect all groups and demographics. The consequences of poor mental health derail work places, home lives, educational opportunities, and physical spaces.  Instead of being proactive and working to address these issues, society remains deeply enshrouded by stigma.  Crisp, Gelder, Rix, Meltzer, & Rowlands, (2000) state that stigmatizing opinions about people with mental health problems are widely held, opinions vary in nature and frequency for different disorders, and addressing stigma will need to provide information about mental health and attempt to reduce discrimination (p. 7). While many people experiencing mental health issues may initially approach medical and psychiatric communities for support and diagnosis, it will be mental health organizations that provide ongoing support.  Unfortunately, neither the medical nor the mental health communities have effectively utilized the knowledge and experience of people accessing their services. Mental health organizations both nationally and internationally have begun to recognize the importance of inclusion of populations served, as well as the importance of providing participants a voice and a role in guiding policies, practices and processes. Although it may seem obvious that people who access services should play a key role in guiding an organization, this type of change presents significant challenges. It is difficult to introduce participatory and inclusive practices into organizations traditionally functioning in a hierarchical manner with little reliance on utilizing the wealth of knowledge existing in people accessing services. The Canadian Mental Health Agency Vancouver Fraser (CMHA-VF) wants participants and family members to be involved in all aspects of the organisation.  This includes strategic planning, decision-making, and delivery and evaluation of programs. The purpose of this 9report is to present the methodology, findings, and recommendations generated from an agency-wide participatory planning process that set out to: identify why participants and family members have not become involved, determine how they would like to be involved, get them involved by creating space for involvement, and initiate practices and principals that ensure ongoing involvement. For the purposes of this report, participants are people who are engaged in the process of recovery through participation in Canadian Mental Health Association Vancouver Fraser programs and services. People with lived experience are those who have been engaged with the CMHA-VF but are no longer accessing services. Family members refer to people related and non-related who support or have supported CMHA-VF participants in their process of recovery.The report is a resource for participants, family members, staff, and the Board of CMHA-VF, as well as for community planners, consultants, or other agencies that want to engage mental health participants who have been disenfranchised, stigmatized, or have not been encouraged and supported in contributing to the agencies that support their recovery process. In the next section, literature on mental health organizations and participant involvement, the CMHA-VF Strategic Plan 2014-2017, earlier initiatives focused on fostering participant involvement, and review of the readings on the importance of family, will be discussed. Following this, research methods will be explained and will include the development of the Participant and Family Voice Committee (PFVC), the Participant and Family Voice Committee Guiding Principles (PFVC-GP), and the use of the Participant and Family Voice World Café (PFV-WC). All three were used in creating a framework for fostering participant and family involvement. Following this, the report will explain the findings from the process. The report concludes with a brief review of key themes and a presentation of both short and long-term recommendations for the Agency. 10Section 2: Literature ReviewMental Health Organizations and Participant Involvement New Zealand, Australia, and the United Kingdom have been leaders in participant involvement. Since the 1990’s, their governments and national mental health organizations have introduced policy and legislation that require these organizations to have participant involvement (2011, Brown). Government mental health standards in the three nations stipulate that participants are involved in planning, delivery, and the evaluation of services. Accreditation of these agencies is dependent on participant involvement. Unfortunately, reviews done in the mid 2000’s revealed that governmental policies advocating consumer involvement had not necessarily reached the organizational level and that there are still significant barriers to participant involvement (2011, Brown). In 2012, the Mental Health Commission of Canada published their first mental health strategy, Changing Directions, Changing Lives: The Mental Health Strategy for Canada.  The document identifies six strategic directions to improve mental health and well-being. One of the key priorities identified was the issue of involvement. Priority 2.2 identifies the importance of actively involving people and families living with mental health issues and giving them opportunities to have input into decision-making concerning service systems. The Canadian Mental Health Association (CMHA) is a nation-wide voluntary organization that promotes mental health and supports the resilience and recovery of people experiencing mental illness; CMHA branches provide services to 120 communities with the help of over 100,000 staff and volunteers (CMHA, About CMHA section, 2015). The CMHA is the only mental health organization addressing all aspects of mental health including public policy and advocacy, mental health promotion, and the provision of branch programs and services supporting people at risk. In the absence of an official Mental Health Strategy for Canada, the Canadian Mental Health Association’s central policy for people for mental illness has been guided by A Framework for Support: Third Edition, which clearly outlines the importance of the role of participant and family in the organization (Trainor, Pomeroy, & Pape, 2004). Healthy, resilient, and inclusive communities and the organizations and community planners that support them, must be committed to mental health for all, and recognize that the health of the community is dependant on the mental and physical health of each individual. People with mental illness can experience mental well-being, for example, by working at a fulfilling job; conversely, people free from diagnosed mental 11disorders can  experience mental distress when working through difficult life situations (CMHA, Mental Health Promotion, 2015). The CMHA is a recovery-based organization and outlines the following: Recovery is the personal process that people with mental health conditions experience in gaining control, meaning and purpose in their lives. Recovery involves different things for different people. For some, recovery means the complete absence of the symptoms of mental illness. For others, recovery means living a full life in the community while learning to live with ongoing symptoms (CMHA-O, Recovery, 2015).Recovery based, mental health organizations follow the principles of psychosocial rehabilitation (PSR). PSR promotes self-determination and empowerment. Individuals make their own decisions about services and supports they receive (Psychosocial Rehabilitation Canada, 2014). Mary O’Haggan is a pioneer in the participant involvement movement. In In Our Lives in 2014: A Recovery Vision From People with Experience of Mental Illness for the Second Mental Health Plan and the Development of Health and Social Sectors (New Zealand), she states “We want services led by us that enhance our autonomy, recognize us as whole human beings and expect our recovery and offer us a broad range of solutions and resources” (p. 7). Personal empowerment for people experiencing mental health problems asserts that rather than expecting people to comply with care from the medical or mental health community, a more enlightened practice that fosters collaboration between participants and service providers is required (Corrigan, 2004 p. 10). The recovery philosophy implies that people with mental health problems as well as their communities need to start believing they hold most of the solutions to human problems, instead of just professionals and services. We need to start viewing mental health professionals and services, as the carriers of technologies that we may want to use at times, just like architects, plumbers and hairdressers. At the same time the mental health system needs to hand over control to service users and their communities, through fostering service user leadership in personal recovery and in services, through integrating with other sectors, and engaging in community development and social inclusion work (O’Haggan, 2009, p. 2). Recovery requires participant and family member involvement in guiding the agencies that support them. Canadian Mental Health Association Vancouver Burnaby 2014-2017 Strategic PlanOn April 1, 2015, the Canadian Mental Health Association, Simon Fraser Branch, The Delta Branch, and Vancouver-Burnaby Branch formally amalgamated and began operation as the Canadian Mental Health Association Vancouver-Fraser (CMHA-VF, Amalgamation Announcement, 2015). The branch works with the Cities of Burnaby, Coquitlam, Delta, Langley, Maple Ridge, New Westminster, Pitt Meadows, Port Coquitlam, Port Moody, Surrey, Vancouver, White Rock, the Township of Langley, and the villages of Anmore and Belcarra. The CMHA-VF has offices in Vancouver, New Westminster, and Delta. This amalgamation has created an opportunity for change, and the sharing of expertise as the three branches work together on new initiatives. This project was started in 12December 2014 under the CMHA-VB 2014-2017 Strategic Plan that had identified four strategic themes to be achieved by March 2017 (See Appendix A for a complete list of the CMHA-VB Strategic Themes and Goals). …by building stronger relationships between key groups in the organization, particularly the Staff and Board, to better understand the role each group plays within the organization. …by communicating activities to be focused in ways that result in more engaged stakeholders …by enhancing and supporting strong collaborations within the CMHA family…by fully integrating clients and their families in decision making in organization policy, program, research and evaluation …by working with consumers and stakeholders to identify gaps in services for underserved communities…by mobilizing our strengths to develop strategic partnerships, enhance current programming and create new programs for underserved communities…by establishing, an evaluation system that is consistent and integrated into all programs, a system that ensures staff, consumer, and stakeholder feedback is represented.Continue to build innovation, collaboration, and accountability…Live out our commitment to service, respect, and accountability…Improve organizational health to ensure stable services that support innovation…In September 2015 the CMHA-VF reviewed and drafted a CMHA-VF Strategic Plan that models Strengthening Our Collective Impact: CMHA Strategic Plan 2012-2017, and this project now falls under Strategic Goal 2: Ensuring Quality Services. Regardless, the strategic goals of each of  the former branches have long supported participant and family member involvement, yet participants and family members have not become involved in the Agency in ways that reflect the goals. 13Participant Involvement in CMHA Vancouver Burnaby Branch: Models and Principles The idea and commitment to involve participants is not a new concept to the CMHA-VF. In 2011, the CMHA-VB commissioned Barbra Brown to review different models of consumer involvement and to make recommendations for the CMHA-VB. Brown reviewed literature, conducted interviews with representatives from twelve local mental health organizations, led focus groups, and reviewed questionnaire responses. The CMHA-VB Strategic Plan 2010-2015 had already committed the organization to “enacting a policy that promotes a willingness to have multiple voices at all levels of decision making”, recognizing that people who were receiving services should be involved in decision making. The challenge was the same as when this process was started. How is meaningful and inclusive space developed that encourages and supports participants and families working cooperatively with staff and board members (Brown, 2011)?Brown made several key recommendations regarding the design of a CMHA-VB participant involvement program: that the program be guided by the principle that meaningful involvement includes giving participants a decision making role in program planning, delivery, evaluation, and policy development and that participant involvement should utilize both formal and informal mechanisms. The Participant Involvement in CMHA Vancouver Burnaby Branch: Models and Principles, proposed two models for involvement (Brown, 2011). Model one recommended the establishment of site committees at each of the CMHA offices, Vancouver and Burnaby, and that selected representatives from those committees would participate in relevant program committees. To support this model, Brown recommended allocating funds for a paid Participant Coordinator who could support committee work and could act as a liaison to the Board. The Participant Coordinator would be responsible for the design and implementation of the formal and informal involvement initiatives, mediate disputes between participants and staff, and collaborate with other mental health organizations to design participant skill-building workshops. CMHA-VB program committees could help ensure meaningful work by allowing participants to contribute to program planning and to the delivery and development of organizational policies. Brown recommended that committee work be set out in terms of reference that would guide meetings. The final recommendation was that site meetings be held bimonthly, instead of monthly, to ensure adequate time between meetings for task completion. Model two recommended that representatives from Vancouver and Burnaby be selected to serve on program committees where decisions are made regarding program planning, delivery, evaluation, and policymaking. Regardless of the model chosen, Brown recommended the following informal mechanisms: program changes or redesigns should have participant involvement; periodic participant meetings should be held to get and receive feedback about program planning, delivery, and evaluation; focus groups should be conducted; service satisfaction surveys should be implemented; and participants should be encouraged to approach staff, or the participant coordinator, with their ideas. Although the recommendations of the Participant Involvement in CMHA Vancouver-Burnaby Branch: Models and Practices (Brown, 2011) are sound and well informed by the 14literature, they represent some of the key issues common to projects that have not been participatory. Brown worked to involve participants in this process, but of the two focus groups held, the Vancouver focus group was not attended, and only four participants attended the Burnaby focus group. It is likely that regardless of the low participation in the process, the major gap between this process and what has been accomplished at the CMHA-VF in regards to participant involvement since 2011, is the recommendations that were made fundamentally required an engaged or involved group of participants to fill the identified roles. Financial resources have also proven to be a major barrier in fulfilling the recommendations. The funding for a Participant Coordinator never materialized, and thus many of the recommendations were not put into place. Participant and family involvement requires the activation of a community with all stakeholders meaningfully engaged in the process. The agency needs to identify ways to incorporate some of the recommendations made by Brown (2011) while taking time to reflect and identify why the recommendations did not lead to the desired outcome. The process of participant and family involvement requires a stronger awareness of participant and family involvement throughout the Agency, and the process needs to provide access to resources, access to literature, and ensure transparent and inclusive systems for participants, staff and family members to guide and review the process. Building the Community for Participant and Family Involvement The CMHA National has done some exciting work in regards to looking at community engagement within the Agency.  The Engage People with Lived Experience of Mental Health Conditions and Addictive Behaviors Workbook, provides a ‘how to’ guide to enhance the engagement of people with lived experience of mental health conditions and addictive behaviors (2014, Sesula). The workbook is for organizational leaders and participants to determine how far the organization has progressed in engaging people with mental health conditions (2014, Sesula). Like other materials available for the CMHA branch review and utilization, there is often a lack of awareness within organizations of the materials available and which groups would benefit from particular resources. The workbook helped to provide examples of involvement and recommendations on how to encourage participation.  Participants and Family Members for ChangeThe Framework for Support: Third Edition (2004), the CMHA-VB Strategic Plan 2014-2017, and the Mental Health Strategy for Canada (2012), all recognize the importance of family members in the process of recovery. Family members play a critical role in supporting and helping people with mental health issues. Family members are not restricted to immediate families but include friends, teachers, mentors, neighbors, and colleagues. The challenge of supporting an individual through mental illness or mental distress can have profound effects on family members and they are rarely offered support from medical, psychiatric, or mental health organizations 15accessed by loved ones. Family members may be the first people to reach out for support, contacting agencies or connecting people to medical care. Family members often provide financial, emotional, and spiritual support during the process of recovery and may feel vulnerable or need support to maintain their own mental health. Family members are at the front line in times of crisis and therefore become people with lived experience of mental illness. Most importantly, family members who are supporting recovery or have lived experience of mental illness have a strong understanding and valuable insights on interventions and supports that could be most valuable for loved ones. For these reasons, most mental health organizations including the CMHA recognize the value of engaging family members.1617Section 3: MethodsThe theoretical and empirical methods applied in the participatory planning process include the development of the Participant and Family Voice Committee (PFVC), the PFVC Guiding Principles (PFVC-GP), and the Participant and Family Voice World Café (PFV-WC).  The latter represents a group interaction method that relies on facilitated and focused dialogue and is an example of Asset Based Community Development (ABCD); a bottom-up way of working that was chosen for this process as a method to help the community come together. The CMHA-VF strategic participant and family member involvement goals are top-down, evidence informed, and mandated.  If the process could mobilize the community to develop their own bottom-up participant and family member led goals for involvement, it would produce sustainable participant and family involvement within the Agency.This process relies on a case study methodology and mixed research methods. The methods include secondary review of primary data, PFV-WC notes, table papers, table facilitator notes, and graphic facilitation and review of the PFVC agendas, meeting minutes and materials produced. The review also includes the planning consultant’s observation photographs, presentations, and field notes from PFV-WC events, as well as notes from meetings with participants, family members, staff and board members. A literature review of CMHA resources, the Mental Health Strategy for Canada and Psychosocial Rehabilitation Canada also helped to provide the context for working with people experiencing mental health problems and the strengths and limitations of the agencies and professionals supporting them. The analysis of the process and objectives focused on emphasizing the knowledge of participants and family members, identifying the specific and unique needs of the CMHA-VF, and highlighting the insights and ideas generated from the process, to make sustainable participant and family member identified, staff and Board supported, recommendations for the Agency.  Participant and Family Voice Committee The Program Manager of Community and Vocational Integration and the planning consultant met in November 2014 to devise a strategy for participant and family involvement. This started with the launch of the PFVC and the committee met on December 2, 2014. The Program Manager, four staff from different programs, and the planning consultant attended the initial meeting. The committee planned to recruit participants, family members, and Board members to review literature, contact other agencies, and develop terms of reference. The terms of reference helped to clarify the purpose and goals of the committee and to set timelines to guide how and when work would be completed (see Figure 1). The committee met for two hours, during the first Tuesday of each month. From January to March 2015, the initial committee members and a Board member used the information presented in Participant Involvement in CMHA Vancouver-Burnaby Branch: Models and Practices (Brown, 2011), the CMHA-VB Strategic Plan 2014-2017, and a review of the current literature on participant involvement in mental health organizations to identify the following purpose for the committee. The PFVC would support the Agency in fostering the engagement of participants and family at the CMHA-VF in planning, decision-making, and program development, in order to contribute to a healthy and inclusive community. The committee would work to plan and implement evidence informed processes and practices of participant and family involvement in the agency.Once the PFVC established the terms of reference, the most important issue was ensuring 18Figure 1: Terms of Reference for the CMHA-VF Participant and Family Voice Committee Terms of ReferenceCommittee MembersPurposeGoalsThe committee will meet monthly. Additional meetings will be held as required.ActionsCMHA-VF Participant & Family Voice CommitteeChairperson: Ruth MacLennan Staff: Christine Edgecombe, Janessa Davis, Katy Vinson, Ruth MacLennanBoard Member: Regina CaseyParticipants: Brenda, Shareen, Jody and Holger.Family Member:  GavinMaster’s Student: Ryanne James   The agency wishes to foster the engagement of participants and family members at the CMHA VF in planning, decision-making and program development in order to contribute to a healthy and inclusive community. The committee will plan and implement an evidenced informed processes and practices of participant and family involvement in all aspects of the agency.• Explore evidenced informed practices in participant and family involvement in nonprofit agencies similar to CMHA VF. (Informal)• Review recommendations that were made by Barb Brown in 2011 in a research paper on “Participant Involvement in CMHA Vancouver/Burnaby Branch: Models and Practices”. • Develop and implement an evidenced informed processes and practices to engage CMHA VF participants and family in meaningful involvement in the agency.  • Participant and family involvement will include all aspects of the agency such as strategic planning, committee work, staff recruitment, program evaluation and delivery, program research, policy development, fund raising and board of directors activities and any other aspects of the agency as deemed appropriate.   First Meeting Dec 6, 2014CMHA Staff Committee meets. Dec 2014Research Best Practices for participant and family Involvement at the agency and program level.   Jan 2015Recruit participants and family members to join PFVC committee. Feb 2015Develop a Terms of Reference and Framework for the PFVC committee. Mar 2015Engage participants and family members in involvement in the Participant & Family Voice Committee. Apr/May 2015Engage participants and family in providing feedback about involvement in the agency through World Café dialogue events.Jun 2015Host event and to report to participants and family members on how they would like to be involved in contributing to CNHA VF.Jul 2015Develop plan for approval for on-going involvement of participants and family. Aug/Sept 2015Completion.  June 201519that participants and family members were on the committee. Ideally, participants and family would have been part of the process determining the TOR, but the PFVC was aware that the committee needed to have purposeful and clear guidelines for participant and family member committee roles, prior to engagement.  What was expected of each group? What was the time commitment required? How would participants be remunerated?  How would the PFVC ensure that participants were playing a role in decision-making and how could the PFVC ensure that engagement was meaningful? Once participants and family members were actively involved, the PFVC reviewed and revised the terms of reference.  The committee struggled to find participants and family members, largely because these groups were not already involved in the Agency. The process of invitation is the most significant part of the participant and family engagement process.  There were two distinct parts of invitation; the details, commitments, and remuneration outlined in the invitation and how the invitation was extended. The Committee worked, re-worked, and reflected on the process and considered many options used by other health organizations. Applicants chosen would be expected to attend the monthly meetings, read the relevant material, contribute to decision making, and work in partnership with the staff and board to implement participant and family involvement in all aspects of the Agency. The call for involvement asked for two current participants, two past program participants (people with lived experience) and two family members.  The people chosen would receive a $30 honorarium per meeting, with opportunities for further engagement.  The planning consultant drafted a letter that was reviewed and approved by the PFVC, then sent agency wide; the letter was posted at program sites and staff reached out to participants. (See Appendix B Invitation to participants and Family Members to Serve as Committee Members on the PFVC). The participants who joined the committee were all invited by personal invitation. In April 2015, the PFVC welcomed two current participants and one member with lived experience of mental illness. In May, the PFVC welcomed two more participants and a family member. One of the highlights of recruitment was the return of a participant who had been involved in the 2011 Burnaby focus group for participant involvement; she was excited to return to the process and was able to contribute valuable insights from her previous experience.PFVC Plan for Agency Wide Participant and Family Involvement Working collectively, participants, family members, staff and Board members of the PFVC were ready to explore the process of engagement with the larger organization. The group initiated ideas and these were investigated and developed by the planning consultant for presentation at future meetings. The Program Manager chaired monthly meetings which largely consisted of the planning consultant presenting ideas, planning processes, doing literature reviews,  and preparing documents or presentations, produced to achieve the objectives of the Committee.  The PFVC participants and staff would give feedback, suggestions and ultimately make the decisions regarding how the process would move forward. As of March 2016, there have been fifteen meetings of the PFVC.The planning consultant made all materials, agendas, minutes, literature, document, promotional materials, recommendations, and notes accessible to the PFVC and other staff members through a shared folder. The folder ensures transparency, ease of accessibility, and encourages members to follow the process. The shared materials are extremely useful when new individuals join the Committee. 20Participant and Family Member Voice Guiding Principles Planners must be politically deliberative and personally reflective, as much of their work occurs between interdependent and conflicting parties in the face of inequalities of power and political voice (Forester, 1999, p. 2). One may not initially think of the PFVC as being a space of conflict as it exists in an organization that has declared a commitment to change and theoretically has a body of participants and family members who want to be involved and support new ideas. Unfortunately, change is problematic for organizations and there is often an atmosphere of suspicion when problems are approached differently.  There can be a feeling of unease when roles are changing and when issues of rank occur. The CMHA-VF must consider a paradigm shift. To support radical change, agencies need to consider moving away from hierarchical, compartmentalized, linear models, to ways of working that are more interactive, contextual, and that explore possibilities and pursue multiple ways of knowing (Kritiek, 1994). Given the potential for conflict, the existence of significant power dynamics, and stigma, the PFVC wanted to have clear guiding principles as part of the methodology to establish a foundation for collaborative and respectful engagement. The emphasis of these shared values will create and maintain reciprocal knowledge exchange and meaningful involvement in the Agency. Building RelationshipsMutual understanding and strong respectful relationships are the foundation upon which healthy communities are built. In order to create an environment where participants, family members and staff feel comfortable sharing insights, reflections, and experiences, it is important to ensure that people can meet in neutral environments outside of the CMHA offices,or CMHA programs. Relationships are nurtured when people are given the time to introduce themselves and share their roles, assets, education, concerns, and/or experiences with mental health. Participants, family members, Board members, and staff must work together to recognize the “expertise by experience” of participants and family members and encourage each other to connect through mutual respect.Inclusiveness  & EqualityThe process must be inclusive to ensure that all participants are welcomed and supported. The PFVC participants and family members should reflect the broad community in regards to age, gender, religious/spiritual, ethno-cultural, language, and rural-urban communities. There are power dynamics at play within the organization, participants have not felt on equal footing with staff and family members and are not certain where they “fit” into the Agency. It is imperative that the process maintains a space that ensures an atmosphere of shared power and equality. By having people sit and work together, environments can be created where all members of the CMHA-VF feel equal and valued regardless of rank, position, sex, education, profession, contribution, or role. People are welcome to participate at all stages of mental health and people are free to come into and leave the process as required. 21Collaborative Decision Making All decisions must be made in a collaborative manner. It is important to ensure that participant and family member roles are not tokenistic. Each person has a voice and plays a decision-making role. By creating a space where all members work together to reach common goals, and by using strategies such as careful listening, transparency, respect, flexibility, and open mindedness, participants will be able to initiate and support change. Working in this manner often takes more time, but it ensures that programs are better designed, better supported, and better able to navigate future challenges. Where decisions cannot be made by consensus, the PFVC may opt to vote. Dialogue Open, purposeful dialogue keeps people engaged and makes it easy to share ideas in a respectful environment. People from outside the Agency should facilitate dialogues if possible; this enables all parties to contribute thoughts, to listen, to speak, to connect ideas, and to experience learning without feelings of perceived biases. Given that not all parties feel comfortable to speaking or shareing ain a group setting, there must be opportunities to communicate in other ways, such as email, or by writing concerns on paper. Facilitated dialogue allows people to share experiences, solutions, or suggestions in a way that creates shared collective knowledge and understanding.  ReflectionRefection allows for insight, direction, and humor. The practice enables individuals to see if the process is working, if people are being heard, and if ideas are being generated collaboratively. Taking the time to reflect, regroup, and review feedback makes for exciting, creative, and unanticipated outcomes. Time for reflection leads to deeper learning and results in a process that is more likely to benefit all parties. ActionThe guiding principle of action allows all involved parties to see that their time, effort, and contributions are resulting in positive change. By taking the time to identify next steps, new goals, and to report accomplishments, those involved ensure that the process has purpose, they know why they are engaged, and they know why they want to remain actively involved. 22Art of Hosting: Participant and Family Voice World CaféThe World Café is a process for engaging people in meaningful conversations.  As people move from one group to another, they can build relationships, learn, cooperate, explore possibilities, and create together (The World Café, 2015). The planning consultant introduced the PFVC to the principles of the World Café by sharing videos and other World Café resources. The planning consultant worked to help people select their roles so that everyone understood what was expected during the events (See Appendix C for a description of World Café roles and role assignment).One of the PFVC participants chose to act as a table facilitator/host and the other participants and family member chose to be involved in the process by sitting at the tables to contribute to the dialogue. The planning consultant acted as the host and M.C. for the events. Staff took notes at the tables, the Board Member was the overseer, and the Program Manager was the caretaker.  The caretaker role was particularly important in this particular World Café process because it was important that if participants were triggered in the conversions or through a particular experience, there was someone clearly identified to offer support. The planning consultant recruited SCARP students to be table hosts/facilitators for the small group discussions and for graphic facilitation. Participants and staff recommended shortening the World Café process by one round to respect mental health and participant time concerns (See Appendix D for a detailed description of the Agenda for the PFV-WC). The Art of Powerful Questions: Catalyzing Insight, Innovation, and Action (Vogt, 2003), helped the PFVC to compose questions that would be though provoking and meaningful to the process. The planning consultant booked the community centers and collected supplies including butcher paper, graphic facilitation paper, note pads, computers, iPads, felt pens, tablecloths, figurines, pens, and art supplies. The planning consultant designed posters for the events and was responsible for the creation of the invitation to the PFV-WC process and these were sent agency wide (Figure 2). The PFVC invited staff with different roles in the organization and participants from diverse programs to explore challenges and opportunities from multiple perspectives. The Program Manager took care of RSVPs to the events, and with the help of participants and staff, organized food and drinks. Participants wanted coffee and tea, stevia (for diabetics), biscotti, water, and fruit platters. People feel nourished, energized, and valued for their time when they are provided delicious and nutritious food. The provision of food added to the feeling of comfort and the creation of the café atmosphere. 23Figure 2. Invitation to Participant and Family Voice World Café events were distributed agency wide.24World Café Events Vancouver & Burnaby The World Café Vancouver session was held on Tuesday June 9, 2015 at the Mount Pleasant Community Centre and there were eleven staff and seventeen participants.  The World Café Burnaby session was held on Monday June 22, 2015 at the Bonsor Recreation Complex, and there were ten staff and fifteen participants. Efforts were made to make drab community spaces more inviting by decorating with tablecloths, flowers, figurines, and drawings of the World Café etiquette on the walls. Beverages and snacks were provided and guests were encouraged to help themselves. Sharpies, pens, post it papers, butcher paper, and notepads were on each table to stimulate creativity and encourage people to have fun while contributing thier ideas in writing (Figure 3).A brief outline of the agenda was prominently exhibited; this helped to keep people on track and to ensure that the process was understood (See Appendix D for a detailed description of the World Café agenda). The planning consultant/host introduced the Agency, the concept of participant and family involvement, and reviewed the questions that would be asked. The planning consultant/host provided examples of involvement and reviewed the World Café guidelines. There were two rounds of small group dialogue, with time to harvest and collect the ideas generated at each table after each round. In round one, table facilitators encouraged guests to describe what involvement in the CMHA-VF would look like, and in round two asked questions around why people get involved. The main question was displayed; the supporting questions helped the table facilitators to support Figure 3. World Café events were held in spaces that were comfortable, fun, and neutral. Materials were provided to encourage creativity and contribution. 2526ROUND 1WHAT  DOES INVOLVEMENT IN THE CMHA-VF LOOK LIKE TO YOU?WHAT IS INVOLVEMENT?WHAT DOES IT LOOK LIKE TO YOU?DO YOU HAVE EXAMPLES OF WHERE YOU FEEL THAT YOUR VOICE WAS HEARD?IF YOU COULD ENGAGE PARTICIPANTS IN ANY WAY YOU WANTED, HOW WOULD YOU LIKE TO SEE PARTICIPANTS INVOLVED?HOW WOULD YOU LIKE TO SEE THE OUTCOMES OF PARTICIPANT AND FAMILY MEMBER INVOLVEMENT? INFORMATION SESSIONS, REPORTS ETC.?WHERE HAVE YOU SEEN MEANINGFUL INVOLVEMENT?27ROUND 2WHY DO PEOPLE GET INVOLVED?HOW DO WE ENCOURAGE INVOLVEMENT? WHAT MOTIVATES PEOPLE TO BECOME PART OF COMMUNITY MEETINGS?WHAT DO YOU NEED TO BECOME INVOLVED AND WHAT DO YOU NEED TO REMAIN PART OF THE GROUP?DO YOU THINK THAT MEANINGFUL ENGAGEMENT, HONORARIUMS, INCENTIVES, AND THE CREATION OF SAFE SPACES TO CONNECT AND COMMUNICATE ARE IMPORTANT?WHAT ARE SOME OF THE OBSTACLES TO INVOLVEMENT?28Figures 4a & b (opposite). Table dialogue facilitators took notes to allow guests to verify that their contributions were noted and helped facilitators to lead refection sessions. The table facilitators ensured that everyone was given a chance to speak and facilitators took notes to capture thoughts and ideas (Figure 4). Each table had white butcher paper and post it notes to allow people to write down ideas and to contribute thoughts if they did not feel confortable speaking (Figure 5). The use of the CMHA terminology was very confusing. Initially, participants were asked about participation in the Agency and the PFVC realized that there would need to be a clear differentiation between participation and involvement.  Participation refers to attending CMHA-VF programs, services, or events, while involvement refers to playing an active or decision-making role in the CMHA-VF. At the initially, participants, family members, and staff were unsure of the possibilities for involvement; it was challenging to get people to think of ways to become involved. The PFVC provided some 29suggestions from the Engage People with Lived Experience of Mental Health Conditions and Addictive Behaviors Workbook (Sesula, 2014) This helped facilitators encourage people to think outside of the box (See Appendix E for a list of ‘Things to consider’). Graphic facilitation is a powerful tool which helped to keep people engaged throughout the sessions. The graphic facilitation illustrated key points by organizing the ideas generated and linking the themes and insights. The creative large-scale visual summary of discussions made it easy to tell the story of the process. The posters made the work memorable and easily accessible for guests. As graphic facilitator Agerbeck (2012) points out, “transparency and tangibility are important both at the meeting and after the meeting (p. 40)”. The PFVC graphic facilitation posters now hang in the boardroom of the CMHA Vancouver office and serve as a reminder of participant and family member involvement in the Agency. Figure 6 is an example of the graphic capture of ideas from one session. 30Figure 5a (top), b (bottom), c (opposite top), and d (opposite bottom)Butcher paper on each table allowed people to contribute by writing down their ideas in imaginative and creative ways. 3132Psychosocial Rehabilitation National Conference The PFVC hosted a workshop called Heart & Hope: Participant and Family Voice at the CMHA-VF at the 2015 Psychosocial Rehabilitation National Conference held on June 16, 2015 in Vancouver. The CMHA-VF paid for participants and the planning consultant to attend the conference. The planning consultant submitted a proposal to present and met and worked with participants to develop the workshop. The graphic facilitation posters from the World Café helped the PFVC share the ideas, themes, and interest generated. Participants and staff told stories and spoke about their experiences. The PFVC had the opportunity to have peer revision and feedback. Participants attended workshops at the conference, had the opportunity to learn with mental health professionals, and were able to contribute their ideas and ask questions. The PFVC used the workshop to bring awareness of instances of participant and family involvement to the PSR community, a community that incudes doctors, councilors, and psychiatrists.World Café Feedback SessionBoth of the World Café sessions identified the importance of feedback as the most significant next step. The planning consultant reviewed table notes, facilitator notes, post it notes, and graphic facilitations, to synthesize and capture ideas and themes from the Vancouver and Burnaby World Café’s and the PSR National Conference. The planning consultant prepared a summary of the feedback and hosted a small focus group with PFVC participants to identify key themes. The planning consultant took the materials back to the PFVC for approval and consultation. The process revealed that stigma was seen as the key barrier to participant involvement.  Participants, family members, and staff wanted to develop recommendations, incorporating key themes of education, connection, diversity of roles, skills and assets, and family to address stigma. Figure 6.  Graphic facilitation of the Participant and Family Member Involvement World Café sessions captured the ideas and themes so that guests could see their contributions. 33On July 28, 2015, the planning consultant and the PFVC hosted the World Café Feedback Session at Robert and Lilly Yee Community Health Centre in Vancouver. The graphic facilitation posters from the previous sessions were used to refresh the various groups about the dialogues. Everyone worked with the planning consultant to generate ideas and to design a one-page summary of the process. Participant and family members wanted a document produced that was simple, approachable, and clear. They felt that a report would be daunting and that participants and family members would be unlikely to read something longer than a page (Figure 7). The distribution of the World Café Feedback provided an opportunity for participants and family members to increase awareness of the work in progress. Keynote Presentation at CMHA-VF Annual General MeetingOn September 22, 2015, the planning consultant was the keynote speaker at the CMHA-VF Annual General Meeting.  Two of the participant members of the PFCV supported the keynote address by sharing their stories and insights about the process.  The opportunity to present the process, methodology, and findings to the Board of Directors and CMHA-VF membership made for agency-wide knowledge and awareness of the PFVC and the PFV World Café process. This type of activity was also part of the on-going methodology, by providing the opportunity for participants to speak directly to the Board of Directors. 34Figure 7. PFVC World Café Feedback: A summary of key themes identified to address stigma as an empowered inclusive community. 35Participant and Family Voice Committee: Ongoing Project The meetings of the PFVC from August 2015 to March 2016 have focused on the development of recommendations and on identifying action items from the key themes. The planning consultant worked in breakout groups with PFVC participants outside of the meetings, and then met with the Program Manager to review the summary of proposed ideas.  These ideas allowed the PFVC to prioritize the themes of education, connection, and diversity of roles, and to narrow the scope of the project (Figure 8). Recommendations and action items were identified under all five key themes to ensure that individuals who had contributed to the process could see that their efforts had not been discounted. Although the placement of recommendations under key themes was not arbitrary, there was considerable overlap. By evaluating the recommendations holistically, the committee was able to identify short-term and long-term goals that captured the intention behind each of the themes. The methodology of having ideas, actions, and recommendations proposed by the larger CMHA-VF community and then summarized and reviewed by the PFVC was challenging because the committee was easily bogged down by the details of presentation, the language, and/or design elements. To mediate these issues, several small group meetings were convened outside of the PFVC. These meetings included the planning consultant and PFVC participants, with the participants being paid $30 per meeting. Several meetings were between the planning consultant and the Program Manager. Another meeting was with a PFVC participant, a peer mentor, a staff member, the planning consultant, and the Program Manager; another was between the Program Manager and a staff member. The PFVC also worked to adhere to the guiding principle of action by creating participant role positions for CMHA-VF committees. The planning consultant drafted position descriptions for roles of hiring, volunteering, and fundraising. The PFVC reviewed the documents and provided feedback and changes to ensure the positions outlined meaningful involvement (See Appendix F for an example of a draft participant description). The PFVC did not attempt to fill the positions because the PFVC realized that recommendations, action items, and the on-going work of the committee would need funding and approval from CMHA-VF leadership and the Board of Directors.Figure 8. PFVC members voted to prioritize the key themes of education, connection, and diversity of roles.36In March 2016, the planning consultant presented a summary of the recommendations for each of the themes and the PFVC committee voted to identify short and long term goals. To support the recommendations, the PFVC and the planning consultant drafted new terms of reference and created a logic model/theory of change that reflect the findings of this report. The theory of change will support the evaluation of the recommendations over the next three years. This report, the new terms of reference, and the theory of change, will serve as a tool kit to garner financial and Agency commitment to participant and family led involvement (See Appendix G for the 2016 Terms of Reference, and Appendix H for the Theory of Change/Logic Model).Limitations of Methodology Although the PFVC, the PFVC Guiding Principles, and the PFV World Café process have all helped to successfully mobilize a significant group of participants and some family members in becoming involved in the Agency, these types of processes, allow individuals to take the lead and propose ideas that may not be realistic or sustainable.  The World Café method specifically is a type of ‘sky is the limit’ process. The principles of the method encourage creativity, innovation, and thinking outside of the box. This can create an environment where some unrealistic conversations may be entertained. For example, in the first session, there was a ‘runaway conversation’. One participant wanted the CMHA National, CMHA-BC, and CMHA-VF websites redone. The participant felt that the greatest barrier to involvement was navigation of opportunities, supports and resources, on the websites. The participant recommended that participants and family members help the CMHA redo the sites. This idea was well received by other participants, who immediatly began talking about the challenges of navigating web based mental health supports, resources, and opportunities. Unfortunately, revamping CMHA National, CMHA BC Division, or CMHA Vancouver-Fraser websites were not in the purview of this process. The Program Manager helped the table facilitator to reign in and refocus the dialogue. It is important that many ideas are generated and heard as part of the process, but facilitators must always be aware of the dangers of simultaneously creating possibilities, while managing expectations. It is unlikely that the process has engaged the diversity of people who are accessing support. One of the guiding principles is to foster inclusivity and equality, the PFVC and its processes should reflect the broad community. Processes must also respect differing educational, personal and professional perspectives. Although the World Café processes were diverse, the PFVC does not represent the broader community.  As participant involvement increases in the Agency, it will be important to consider engaging a more diverse population.  The process was limited in capacity and there was considerable uncertainty. A possibility existed that participants and family members would not engage, that events would not be attended, that participants would not find the process meaningful, and that they would not feel that they had decision making power. The PFVC is made up of four participants, a family member, three staff, the program manager, a board member and the planning consultant. Within this group, there was mixed capacity for working on initiatives related to ability, experience, time, workload, and mental health. 37There is no quantification for involvement. How many participants and how many family members should be involved and what is the capacity of the Agency to support involvement? The methodology required significantly more time than anticipated. The PFVC participant position stated “This is a time-limited project and is expected to be completed by the end of June 2015.” The original PFVC TOR suggested project completion by August/September. The first meeting of the committee with both participant and family member representatives happened in May.  Timelines were not realistic for meaningful contributions, as the process needed adequate time for relationship building including trust, understanding, and collaboration. In addition, the success of the process means that it is not time-limited; it is on-going. 3839Section 4: FindingsThis section will present the findings of the PFVC, PFVC-GP, and PFV-WC that identify that participants and family members have not been involved because of the implications of stigma. This needs to be changed through a focus on five key themes to address stigma, and that participants, family members, and staff have to work together to find the same language to communicate ideas. The findings also suggest that funding and time were underestimated, that materials and documents need to be easy to understand and presented in multiple ways, that mental health affects people’s ability to contribute differently, and highlight some of the ways that participants and family members have become involved in the Agency. A Shared Vision for Recovery from Participants and their Family MembersParticipants want to play a role in planning, decision-making, and program development at the CMHA-VF, and staff and Board members want to support this innovation. Not only was this stated, it was observed.  Participants have contributed to decision-making, planning, and policy changes within the Agency and have worked to engage family members.  Staff, leadership, and the Board have supported the process with time, money, and resources. Participants assert that an organization that includes their input and family involvement,will enhance autonomy, support recovery, and create an agency that will better serve those involved and the larger community in achieving the goal of mental health for all. Although participants and family members are interested in becoming involved in the agency in many of the ways proposed, it was felt that for involvement to continue, stigma must be addressed.Stigma and Participant and Family InvolvementThroughout history and into contemporary society, there is a deep and resounding stigma associated with the recognition of mental health. People with mental health issues have struggled and continue to struggle to assert control over their health, autonomy, and individualized process of recovery.  The negative stereotypes and stigma concerning mental illness have created a debilitating and ever present oppressive environment throughout communities. Participants and their family members encounter stigma in numerous ways such as self-sigma, medical stigma, stigma within the mental health field, family stigma, professional stigma, media stigma, community stigma, cultural stigma, societal stigma, government stigma, and work place stigma. Figure 9 shows the prominence of the theme of stigma, as it was captured in the graphic facilitation of the themes. The presence 40Figure 9. Graphic Facilitation of the Participant and Family Member Voice World Café themes clearly capture the presence of stigma in the process. and consequences of stigma in regards to mental health affects everyone.   Participants, family members, staff, doctors, nurses, employers, and law enforcement officers, are all affected by limitations imposed by the stigma attached to mental disorders. Stigma, in all its manifestations, keeps people from feeling engaged, supported and valued when they try to be active in communities. Participants spoke of the powerful presence of self-stigma in their lives, and how negative external perceptions of mental illness emanating from the public, the medical community and the media, result in negative perceptions of self. Many participants experience low self esteem, feel socially and financially isolated, and have lost the confidence to share voices and opinions. Too commonly, the process of receiving a mental health diagnosis, such as bi-polar, a substance-induced disorder, major depressive illness, generalized anxiety, or schizophrenia, is in itself a process that participants are striving to overcome. The labeling of individuals and the connotations associated with the particular diagnosis; often cripple people in trying to navigate their lives.Participants feel vulnerable and report that it is hard to become engaged in new activities unless they have built strong relationships based on mutual respect and trust with peers, staff, and Board members. Participants felt that stigma 41within the CMHA-VF left some participants and family members feeling intimidated by the prospect of working with staff on initiatives. The PFVC and the World Café workshops represent some of the first events where participants, family members, staff, and Board members sat at the same table to work together to establish and achieve common goals. Participants were extremely critical of experiences with stigma in the medical community. Participants and staff recognized the lack of connection or communication between medical professionals treating participants and the mental health organizations with which they are engaged. Participants were interested in being involved with the CMHA-VF to work to reduce stigma and to inform the medical community through advocacy and programs supported by the CMHA-VF. Participants spoke of the role of professional and workplace stigma as a barrier to their involvement. Participants have numerous skills and assets acquired from professions, education, work, and most importantly lived experience. Some felt that because they were currently receiving services from the CMHA-VF, they were perceived as incapable of having anything to contribute. Participants in the sessions were quick to recognize the significance of their contributions, their presence, their voices and their involvement.  One of the clear themes of the engagement process was that participants become empowered through involvement.  42Although Brown (2011) identified lack of interest or lack of training as a barrier to involvement, the feedback from the World Café process unanimously suggests that the biggest barrier to involvement is stigma.The most challenging group to engage is family members. After reviewing the feedback from participants and the few family members in attendance, it became apparent that one of the key issues is stigma occurring in families. Participants reported that many family members did not want to recognize mental illness, so were quite reluctant to engage with the CMHA-VF. One participant shared his personal story and felt that one of the main reasons his family was unwilling to participate was because family members feared having to recognize their own mental health problems through involvement. Another participant pointed out that many people have become estranged from families, in part because of their mental illness. The PFV-WC process clearly identified the gap in family engagement by pointing out that families did not have a clear connection to programs, services, or events.  Many participants spoke of the need for initiatives encouraging family members to be more involved in recovery. The lack of direct engagement with family members was evident throughout the process because although there were many different ways to contact participants through email, phone, or in person, there was no contact information for family members. Family, which have become involved, are related to participants who are also involved. The participants of the committee have all spoken of the power of this work in changing their ability to communicate with their family members. Language and Participant and Family Involvement Language is how humans communicate to forge relationships and to identify and pursue mutual goals; language is the tool used to facilitate change. Early on in this process, it was realized that participants, family members, and staff were not using the same language. The CMHA-VF is using the language of the organization and psychosocial rehabilitation (PSR).  The terms participant, participation, family member, metal health, meaningful involvement, consumer, peer support, and specifically recovery, have very different meanings and connotations depending on the people involved. The World Café reflection notes and table papers brought this insight to the forefront; the staff, participants, and family members used different words to describe similar phenomena.  Language is used to express hopes, fears, emotions, and to explore different ways to relate to one another.  The staff, participants, and family members need to have a common understanding of terms used and what the terms mean to diverse individuals.  Following the guiding principles, it was important to provide time for reflection and to allow people to explain where they were coming from and why a certain terms devised by mental health agencies to challenge public perception, were still offensive or did not express what they wanted to say. Participants want to share individual experiences of mental health in the language they are comfortable using; as well, each individual’s experience will be influenced by age, gender, sexual orientation, socioeconomic background, educational background, cultural background, and personal experience. Participants felt 43CMHA-VF Mental Health Terminologythat the words used did not necessarily reflect their experiences or goals.  If professional and educational opportunities to learn about PSR were shared with participants, participants may feel more empowered in the use of PSR language. Alternatively, it may be necessary to work to develop definitions collectively that better represent unique experiences. Terms also change over time. For example, staff at the CMHA, might say that Sasha killed herself, or that Sasha died by suicide. Bob, a CMHA participant, may say that his sister committed suicide. Mental health agencies no longer use the terms committed or attempted suicide. Suicide was a criminal act in Canada until 1972; the terms committed and attempted apply to criminal activity.  Currently, it is recognized that suicide is the result of mental illness not criminal intension. Consequently, sharing the same terminology will help staff, participants, and family members to understand each other.  It will also mean that everyone will be able to play an active role in discussions by making themselves understood through These terms have fallen out of favor because they describe an agency that works to provide services to clients. Ideally, CMHA-VF would like to ensure an environment is created where people “participate” by playing the lead role in guiding their recovery and giving some direction to the Agency. Consumer/Client/PatientThis means actively working with the CMHA-VF to guide and support the Agency in delivering programing, policy development, research, fundraising, and planning.InvolvementThis refers to the concept that participants have genuine decision-making power within the Agency and are recognized for their ‘expertise by experience’.  Participants are best equipped to give feedback on programs benefiting them.Meaningful InvolvementMetal health agencies have been successfully incorporating systems of peer support. Peer support is when people with lived experience of mental health work with and support people engaged in the process of recovery. This differs from meaningful participant involvement in that peer support workers are employed by the CMHA.Peer SupportAn individual taking part in CMHA-VF services, programs, and activities. Participant44improved mental health literacy.  This will help to diminish stigma. The term recovery was one of the most problematic. CMHA-VF staff, the medical community, and PSR all use the language of recovery. Although some people felt that recovery was an adequate description of living with supports in mental illness, many people felt that the term poorly reflected their experience, and felt resentful of the persistent and prevalent use of the term at the Agency.  Some participants want to be recognized as individuals, without judgment and without the on-going pressure to recover from what they often recognize as an integral part of who they are. Alternatively, some participants expect their recovery and find hope in the use of the term.  The stigma surrounding mental health has distinct cultural differences and language and terms associated with these perspectives. The CMHA-VF must recognize and be open to the fluidity of terms and their usage, must strive to ask people what they mean, and allow them to describe the process with the language that makes each individual feel comfortable.Participant and Family Member Led Participant and Family Involvement at CMHA-VFTo promote and support participant and family member involvement, stigma must be addressed by the Agency. Five key themes were identified to alleviate sigma. These are education, connection, skills and assets, family, and diversity of roles. The PFVC prioritized education, connection, and diversity of roles as areas of focus.Focus on EducationParticipants are the best educators for teaching other participants, family members, staff, employers, and the medical community.Participants want to be involved in the process of education, both in the learning opportunities that are given to staff for professional development and in the delivery of training to staff and family members. As experts through experience, participants feel that program delivery and the opportunity for understanding could be improved if participant, people with lived experience, and family members could contribute, in order to validate their individual experiences, instead of relying on the evidence informed materials. By working collaboratively, staff, participants, and family members, could create the ideal stigma-reducing environment. For example, participants and family members would like the opportunity to receive Mental Health First Aid (MHFA) and would appreciate the opportunity to work alongside facilitators in the delivery of MHFA.   Focus on ConnectionParticipants want to come together to build relationships, to work with the CMHA, to have a voice, and to play an active role in change. Stigma affects self-confidence and makes participants and family members feel reluctant to engage in many aspects of their lives, including building and forming new relationships. Participants speak of the need for people to feel comfortable and familiar, and to have some understanding of the unique roles that both 45staff and peers play. Participants want to come together and connect by sharing meals, ideas, and common interests. The process provided opportunities in each session for people to share experiences, values, ideas, and processes of recovery. People enjoyed having the opportunity to share personal information and ideas that would help improve the Agency. During the process, activities were facilitated that allowed for deeper connection such as requesting people to share more about their backgrounds and experiences so as to purposefully create opportunities for deeper connection and relationship building. Participants spoke openly of how this positively influenced their comfort level and ability to contribute. During the World Café Feedback, the warm up activity was a name game, which asked participants and staff to share the story of their name. People went around the circle and soon realized that they had more in common than they suspected. These activities changed the interaction between staff, participants and family members. In the context of participant involvement, the purpose is not just to come together, but to find people who can create strong working relationships to pursue common goals. Connection and relationship building opportunities should have a clearly defined purpose and facilitation so that participants, family members, and staff can engage in meaningful involvement. In the past, activities designed to encourage relationships have not been successful. People came to enjoy free food and may not have connected to each other. People really enjoyed the process of meeting in the World Café format because it allowed individuals to contribute, to listen, and to reflect on a clearly defined purpose, while building a stronger and more functional community. The various groups also felt a silo effect within the Agency, working at the same table, allowed individuals to get a better idea of the breadth of work and resources of the CMHA-VF. Focus on a Diversity of RolesParticipants want to play different roles within the Agency and with different levels, that respect people at various places in their path of recovery. Participants, family, staff, and Board members are in agreement regarding the importance of the diversity of roles. Through all sessions, this theme was reinforced. Participants want an agency where people from all backgrounds are recognized and given opportunities to become involved.  Their contributions need to be respected, regardless of how they chose to contribute, how much they contribute, or for how long they are involved.  There needs to be a collective agreement that a number of low barrier involvement opportunities are always available. Some participants and family members have become engaged as members of the PFVC, or by speaking as educators at the National PSR Conference. Others have made coffee at meetings or put up posters. A participant described a “blossom of involvement” identifying there is no hierarchy; different petals of the flower create the blossom (Figure 10). In meetings, at workshops, and during the community engagement sessions, both participants and staff should be encouraged to play different roles to build understanding of new perspectives.Participant and family involvement must be a supported process that enhances a sense of well-being for all involved. Participants and staff agreed that there must be opportunities for regular check-ins and potential for training to ensure that the process is not tokenistic. Participants, family, and staff also recognize the importance of respecting fluctuating mental health that may require people to be flexible in their involvement. 46Focus on Skills and AssetsParticipants want to be recognized for their skills and assets.  This recognition can be healing and empowering. Focusing on skills and assets creates empowered participants, family members, and staff.  Participants want to be recognized for their abilities and knowledge.  They also want opportunities to continue skill and asset development through agency involvement. For many, the reality of a mental health diagnosis is an extraordinarily disempowering experience. Participants and staff recognize that it would be useful to incorporate multiple opportunities within the agency for people to recognize and demonstrate skills and assets. Participants and staff identified a few questions regarding these strengths: How can the PFVC work to help people identify skills and assets? How is feedback obtained from people that will make them feel comfortable to express their contributions? How can multiple opportunities be created for people to identify possible areas of expertise as they move through their own unique process of recovery? For example, at “intake,” people could be given a skill and asset form where strengths could be identified. People could Figure 10: CMHA-VF Blossom of involvement: Each petal of the plant is equally important and contributes to the blossoming of the flower of involvement. make coee at an event    sit on a CMHA-VF committee     co-facilitate sta trainingattend a PVC World Cafe         invite family members      speak at a  public event share  your skills and assetspromote eventsCMHA-VF Participant and Family VoiceDiversity of Roles:  A Blossom of Involvement 47inform the Agency about the skills they possess such as word processing, data entry, teaching, graphic design, event planning, fundraising, facilitation, public speaking, or first aid. This would help both participants and staff by giving recognition to those who possess talents that could help to build self-esteem, support recovery, and benefit the Agency.  Most of the ideas brought forward by the PFVC and PFVC-WC were already occurring somewhere in the Agency. By focusing on the skills and assets of people involved in the CMHA-VF, workloads could be reduced and successes could be broadened. Focusing on the assets of both the Agency and the individuals involved helps participants and family members identify and recognize their own skills and assets.Focus on Family Families need more opportunities to connect to the CMHA-VF, to support participants, and to be supported in the process of recovery. Family members do not currently have opportunities to engage with the CMHA-VF and although friends and family members play a significant role in the recovery of many people, they are not directly engaged. The participants, staff, and a few family members who contributed to the World Café process reported that families do not feel supported. Participants spoke openly of how stigma affected their families. Participants also spoke of their wish to be supported in educating families on mental health issues; families need to increase their understanding of what is possible in recovery. They could also benefit from receiving the same type of information given to the participants on mental health and recovery.  This would enable families to become more supportive and better able to maintain their own mental health. Participant and Family Voice Committee ConsiderationsFundingThe PFVC had access to Agency funding through the Program Manager Community and Employment Integration, but funding has been limited. It was used to cover food, drink, supplies and bookings for events, conference registrations, and honorariums for participants and family members. As the project progressed, it became apparent that the PFVC would need to propose a request for additional funding to ensure the capacity and support to move forward with recommendations. Given that participant and family involvement is an Agency priority, a proposal for funding needs to be produced because the project is bigger than anticipated and requires on-going work. Funding needs to be secured for PFVC member honorariums, honorariums for new positions, for events, for training and recognition, and for promotional and educational meetings. In the recommendation section, the planning consultant and the PFVC identify places where funding is needed to bring recommendations to fruition. Facilitation by individuals who are not connected to the CMHA-VF was essential in the initial stage of the project. Participants were openly skeptical of working with staff, and staff had not worked with participants in a decision-making role. The planning consultant provided a neutral perspective during meetings and SCARP students provided this function during World Café sessions. The SCARP students who worked as table hosts/facilitators all had experience working with community dialogues occurring in places of conflict and that might require mediation. The participant who worked as a table host/facilitator, also brought this 48professional expertise. In the future, if the PFVC plans to host more of these events, it would be advantageous to consider paying for outside facilitation, consultation, or recruiting similar student groups. The student planning consultant will remain engaged with the CMHA-VF for an additional year in a volunteer capacity. The CMHA-VF will need to consider assigning staff members more responsibility for carrying out the PFVC initiatives, or alternatively, consider creating more opportunities for capable participants to do more work and determine how to compensate them for their time. The question of compensation has remained unresolved throughout this project. The planning consultant is earning a Masters Degree, the Board Member is an academic interested in participant and family member involvement, and the staff members are being paid. Participants and family members of the PFVC were paid $30 honorariums for each meeting or event that they attended, and participants and family members who attended the PFV-WC were verbally thanked for their contribution. Involved participants and family members had different perspectives that were correlated to their financial situation: many participants were genuinely interested in supporting the Agency as volunteers, but some were appreciative of the honorarium and recognized its value in keeping them engaged. Going forward, it will be important to continue to explore the issue of compensation and recognition for participants and family members as they become more involved. Honorariums, payment, scholarship, bursaries, awards, and paid positions should all be considered as an important part of recognition for contribution to the Agency. Mental Health The mental health of participants was an important consideration in each of the events and the PVFC meetings. Participants, family members, and staff were encouraged in informal check-ins and people were regularly given opportunities to ask for support. This created a comfortable and easy environment where people were able to contribute. The committee members have spent over a year at the same table sharing personal, health, professional, and educational successes and challenges which has allowed for deeper connections and relationships between staff and Board, staff and participants, participants and participants, and participants and family members. Initially, participants were quiet, observant, and reserved. Later, they were outspoken, passionate, critical, reflective, competent, gracious, and deeply personal in their ability to share experiences and offer insights and suggestions for improvements and guidance concerning the Agency. The process has worked to reduce stigma by changing the way staff views participants and the way participants view staff. There must be a paradigm shift in communities, starting with mental health, where space is created for the contribution of people experiencing mental illness. The spectrum of mental disorder is broad, and regardless of the diagnosis, individuals navigating recovery must be respected and supported in their contributions to communities. Time It takes time for new processes to change and evolve. The committee worked to engage participants and family members from the onset, so that the process was not already designed before people were involved. Allowing time for the process provided participants sufficient 49opportunities to build trust and confidence; this , in turn facilitated richer and more genuine contributions. Initially, participants were invited for a three-month engagement. The process has continued but participants are given opportunities to do more, to withdraw, or to continue with the project. It was proposed that August/September 2015 would complete the process. It is true that recommendations could have been made at the end of September, but these would have been the result of the planning consultant’s review of the PFV-WC instead of the participant led and collaboratively formed recommendations presented by this report. July and August are not good months to hold meetings, solicit support, or engage people and the PFVC should allow extra time for projects spanning summer months. The time taken to carefully consider the recommendations, and the level of participant input into their development, will improve commitment and Agency buy-in. Presentation of Materials and Mentorship Participants and family members have spoken of the importance of access to mental health resources, of opportunities to participate in research, and to contributing to CMHA-VF publications and promotions. Participants and family want to ensure that materials and documents produced from the project are accessible, and that the ideas are communicated on multiple formats, including reports, graphic representations, emails, letters, posters and presentations.Participants and family members involved in the Agency, are interested in mentorship and the opportunity to support other participants who are becoming involved. Highlights Participants and family members of the PFVC have become highly involved in the Agency.  Through their work on the PFVC, they demonstrated the type of empowerment that occurs when participants are meaningfully involved. Since their initial involvement with the PFVC in April/May 2015, the PFVC participants have become involved in the Agency in the following ways:• Members of the PFVC • Involved in decision-making • Involved in planning for PFVC and PFV-WC• Developed National PSR Conference workshop• Involved in policy development • Presented at the National PSR Conference on behalf of the CMHA-VF PFVC• Table Host/Facilitator at PFV-WC• Invited peers to become involved in the Agency• Presented at the CMHA-VF Annual General Meeting• Put up World Café posters and promoted events • Worked on promotional material design • Created participant role descriptions The PFVC has experienced consistent staff, leadership and Board of Directors support, the invitation to present at the National PSR Conference, and the Keynote Address at the CMHA-VF Annual General Meeting has ensured that there is Agency wide awareness and support of participant and family member involvement. 5051Section 5: RecommendationsParticipant and Family Member Voice Committee Recommendations The recommendations of this report are numerous to reflect the input of ideas of participants, family members and staff, and the long-term nature of the process. The PFVC and the Agency recognize that four recommendations should be prioritized as a place to begin. The Participants want to come together to build relationships, to work with the CMHA, to have a voice and to play an active role in change. ConnectionNEXT STEPSSHORT  TERMLONG  TERMMaintenance and security of contact information • Engage family members • Use graphic facilitation and posters to promote involvement • Events accessible by transit• Create materials in additional languages• (Punjabi, Cantonese, and Mandarin)  • T-shirts and Ask Me buttons• Funding• Engage CMHA-VF program sites in New West and Delta, as well as, Vancouver and Burnaby.• Events accessible by transit.• Funding .Collect and maintain contact list • PFVC members are present at CMHA-VF connection events and speak about involvement VS participation • T-shirts and Ask Me buttons.• PFVC helps to identify event, in partnership with engagement committee • Invite family members• Plan activity to deepen connection at events• PFVC plans World Café Event .• Invite family members.Collect contact information from family members, participants and staff that attend PFVC events.Plan additional Annual events like the CMHA-VF Summer BBQ, these events provide opportunity for low barrier involvement.Host annual World Café event to address stigma, and participant and family involvement.Recommendation Action ConsiderationsTable 1. Focus on connection: Recommendations to reduce stigma and promote participant and family involvement.recommendations of priority are in the next steps identified under the first three themes connection, education, and diversity of roles.  The planning consultant used the key themes as guidelines to identify recommendations from the ideas, thoughts and suggestions of the PFV-WC and the ideas of the PFVC. The planning consultant presented the recommendations to the PFVC and members voted to prioritize recommendations as a next step; short-term and long-term. 52Participants are the best educators for teaching other participants, family members, staff, employers and the medical community.Recommendation Action Considerations• Identify interested participants and family members• Funding• Consider showcasing personal recovery definitions to show that recovery means different thing to different people, graphic Facilitation • Draw or lottery for feedback• Explore engagement of the medical community• Psychiatric Grand Rounds• Division of Family Practice • Logistical considerations, staff meetings attended by 50-60 staff.• Funding, honorariums for participants • Identify interested participants and family members• FundingParticipants receive formal and informal educational opportunities offered to staff.Prepare “What Recovery means To Me” and distribute Agency wide, make available at events and “intake”• PFVC work to identify health partners to cohost the event• Schizophrenia Society Mood AssociationPFVC review CMHA-VF satisfaction surveys, and make program recommendations Participants and family members on the Staff Education & Professional Development Committee.• Plan Stigma World Café • Recruit facilitators • Schedule upcoming staff meeting• PFVC work to identify potential program for initial involvement.• Wellness Recovery Action Plan, WRAPEnsure that new and on-going staff training and educational events can be open to participants and family membersClarify the language of recovery for participants by creating a participant input opportunity PFVC led World Café, to educate doctors, nurses, and mental health professionals about stigma through storytellingParticipants, family members and people with lived experience review feedback and provide input about programsParticipants and family members, collect feedback and provide input about training materials for staff.PFVC hosts a World Café event to explore stigma at a CMHA-VF Agency wide staff meetingDelivery of new and on-going training and educational opportunities incorporate participants and family members as trainers or co-facilitatorsTable 2. Focus on education:  Recommendations to reduce stigma and promote participant and family involvement EducationNEXT STEPSSHORT  TERMLONG  TERM53Participants want to play different roles within the Agency and with different levels, that respect people at various places in their path of recovery. Diversity of RolesRecommendation Action ConsiderationsEngage CMHA-VF branches outside of Vancouver or BurnabyPairing participants or family members will foster peer support and diminish tokenism• To provide low barrier access point to involvement.• Provides a way for a diversity of people to become involved .Identify CMHA-VF participants who are doing this work elsewhere to investigate mentorship opportunitiesCreate and post participant/family member positions for the following CMHA-VF committees; hiring, seniors, health and safety, fundraising, volunteering and PFVCLiaise with the Board to support recruitment of CMHA-VF participants and family members.Create a inventory of skills or roles needed for eventsCreate and post participant/family member positions for public relations and storytelling .Create roles for participants and family members on new andexisting CMHA-VF committeesParticipants or family members identified to take roles on the Board of Directors .Send Agency wide invites to participants and family members to contribute to PFVC eventsRecruit participants for CMHA-VF communication and public relations opportunities.Table 3.Focus on Diverstiy of Roles:  Recommendations to reduce stigma and promote partipciant and family involvement NEXT STEPSSHORT  TERMLONG  TERM54Participants want to be recognized for their skills and assets.  This recognition can be healing and empowering. • Give recognition often and consistently to participants, family members and staff for their contributions• Awards, or scholarships for involvement (MHFA)Promotes Agency wide uptake of participant and family involvement • Consider before and after for PFVC participants, family members and staff• Provides recognition for involvement • Provides opportunity to see which skills can be contributed and which skills can be developed through involvement• Consider management of skills bank data or of forms• Changing mental health will change peoples perception of their skills and assets Recognize participant and family member involvement in CMHA-VF newsletter, publications and annual report.PFVC works with program mangers to have participant and family member skills development added to existing logic models PFVC creates participant and family member biographies, to demonstrate skills and assets• Create CMHF-VF form that lists skills and assets for participants and family members to complete• Provide at numerous access points to the AgencyAppreciate and recognize participant skills, assets and contributions to the organizationAdd development of participant and family member skills and assets to program logic models where appropriateRecognize a variety of roles where skills and assets are expressed; GSC peer led groups, ECHO leadership ambassadors and volunteersCreate a participant and family member inventory of skills and assetsTable 4. Focus on Skills & Assets:  Recommendations to reduce stigma and promote participant and family involvement Recommendation Action ConsiderationsNEXT STEPSSHORT  TERMLONG  TERMSkills and Assets55Families need more opportunities to connect to the CMHA-VF, to support participants and to be supported in the process of recovery.Family members need a neutral opportunity to learn about program services and to develop mental health literacy Similar resources to those provided to participants, with family specific supportsAre there existing programs where it makes sense for families to participate Plan CMHA-VF family open housePFVC works to create a family welcome package • Invite family members to WRAP training • Alternatively, develop WRAP for families Host an annual open house and educational event for families to welcome them to CMHA-VF. Develop agency materials for familyAt the program level, encourage family involvement Table 5. Focus on Family:  Recommendations to reduce stigma and promote participant and family involvement  Recommendation Action ConsiderationsNEXT STEPSSHORT  TERMLONG  TERMFamily56ReferencesAgerbeck, B. (2012). The graphic facilitator’s guide: How to use your listening skills to make meaning. Chicago, Illinois:, T. (2009). Mental health: a friend, a home, a job. Ottawalife, February,  31-33. Brown, B. (2011). Participant involvement in CMHA Vancouver/Burnaby Branch:  Models and practices, 1-33. Vancouver, British Columbia: Canadian Mental Health Association Vancouver Burnaby. Canadian Mental Health Association. (2012). Strengthening our collective impact: CMHA Strategic Plan 2012-2017. Ottawa, Ontario: Canadian Mental Health  Association. Canadian Mental Health Association. (2014). Canadian Mental Health Association Vancouver-Burnaby strategic plan. Vancouver, British Columbia: Canadian Mental Health Association Vancouver Burnaby.Canadian Mental Health Association. (2015). About CMHA. Retrieved from Mental Health Association. (2015). Mental health promotion. Retrieved from Canadian Mental Health Association Ontario (2015). Recovery. Retrieved from Canadian Mental Health Association Vancouver Fraser. (2015, April 1). Amalgamation Announcement. Retrieved from Corrigan, P. W. (2004, Autumn). Enhancing personal empowerment of people with psychiatric disabilities. American Rehabilitation, 28(1), 10. Retrieved from, A. H. Gelder, M. G., Rix, S., Meltzer, H. I., & Rowlands, O. J. (200) Stigmatisation of people with mental illnesses. British Journal of Psychiatry 177, 4-7.Forester, J. (1999). The deliberative practitioner: Encouraging participatory planning processes. Cambridge, Massachusetts: The Massachusetts Institute of Technology Press.Kritek, P. B. (1994). Negotiating at an uneven table: Developing moral courage in resolving conflicts. San Francisco, California: Jossy-Bass. Mental Health Commission of Canada. (2012). Changing directions changing lives: The mental health strategy for Canada (ISBN: 978-0-9813795-2-4). Calgary, Alberta: Mental Health Commission of Canada. O’Haggan, M. (2009). Recovery Article for Mental Health Today. Retrieved From’Haggan, M. (2014). Our lives in 2014: A recovery vision from people with experience of mental illness for the second mental health plan and the development of the health and social sectors (ISBN: 0-478-11394-3).Thorndon Wellington, New Zealand:Mental Health Commission of New Zealand.Orloff, A. (2007). [Graphic Illustration of World Café Guidelines] Retrieved from Public Health Agency of Canada. (2014). Mental Health Promotion. Retrieved from Psychosocial Rehabilitation. (PSR) Réadaptation Psychosociale (RPS) Canada (2014). Principles of Psychosocial Rehabilitation. Retrieved from Sesula, D. (2014). Engage people with lived experience of mental health conditions and addictive behaviors workbook. Vancouver, British Columbia: Canadian Mental Health Association BC Division. Trainor, J., Pomeroy, E., & Pape, B. (2004). Framework for support: Third edition.  Canadian Mental Health Association. (ISBN 1-894886-12-7 )Toronto, Ontario: Canadian Mental Health Association. Retrieved from, E.E., Brown J., & Isaacs, D., (2003). The art of powerful questions: catalyzing insight, innovation, and action. Mill Valley, California: Whole Systems Associates.The World Café. (2015). The World Café Method. Retrieved from World Café. (2008). The World Café Presents…Café to Go! A quick reference guide for putting conversations to work. Retrieved from http://www.theworldcafe.com58Appendix A     — CMHA Vancouver Burnaby Strategic Plan 2014-2017CMHA Vancouver Burnaby Strategic Plan 2014 -2017Strategic GoalsImprove organizational health to ensure stable services that support innovation… building stronger relationships between key groups within the organization, particularly the Staff and Board, to better understand the role each group plays within the focusing our communications activities in ways that result in more engagedstakeholders.…by enhancing and supporting strong collaborations within our CMHA family.Build a diverse and stable funding base that supports collaboration, innovation and service… establishing one self-sustaining social enterprise that will provide employment, training, and focusing strategic fund development efforts on our major gift donors, monthly donors, and planned giving program. Live out our commitment to service, respect and attracting, embracing, and integrating a diverse group of seniors into all aspects of our fully integrating clients and their families in decision-making in organization policy, program, research and evaluation.Continue to build innovation, collaboration and working with consumers and stakeholders to identify gaps in services for underserved mobilizing our strengths to develop strategic partnerships, enhance current programming and create new programs for underserved communities. establishing an evaluation system that is consistent and integrated into all programs, a system that ensures staff, consumer, and stakeholder feedback is represented.The Values that drive our work at CMHA –Vancouver-Burnaby are:1.Accountability–This means that we are transparent and accountable to our clients, their families, each other, the CMHA family, our community, and our financial supporters.2.Service–This means we empower people by providing compassionate and caring service that is relevant, respectful, and responsive to change.3.Respect–This means we treat all people with dignity, we meet them where they are, and we empower them to achieve their goal, whether that person is a client, staff member, donor or volunteer.4.Innovation–This means we take measured steps that let us step outside the box, that lets us be leaders.5.Collaboration–This means we act in ways that are sharing, consultative and in partnership whenever possible.By March 2017 CMHA Vancouver-Burnaby will:CMHA Vancouver-Burnaby 201459Appendix B — Participant and Family Voice : Committee Member Invite  The Canadian Mental Health Association (CMHA) Participant and Family Voice Committee is a new committee exploring an evidence informed model of consumer and family participation with the intention of engaging CMHA participants and family in meaningful ways in the agency. In order to achieve this goal, the Participant and Family Voice Committee requires input from past and present CMHA participants and their family members, working in partnership with CMHA program leaders, staff, and board members.   The primary goal of the committee is to advise and plan the implementation of an evidence informed model of participant and family involvement in all aspects of the agency and programs. We are looking for two CMHA Participants, two CMHA past program participants, and two family members, to fill the consumer/participant volunteer positions. This is a time-limited project and is expected to be complete by the end of June 2015.  Expectations of the volunteer role:  • Attend monthly committee meetings, and other meetings as required; • Represent the agency in a professional manner; • Read committee related material, papers, minutes, agenda, program outlines in preparation for monthly meetings;  • Articulate interests, concerns, and perspectives on the issues being addressed; • Participate collaboratively in group decision making;  • Participate in working groups established to respond to the CMHA Participant and Family Voice mandate;  • Maintain an open mind, and work as a team member;  Compensation:  This volunteer position will run from April to June, meetings are held on the first Tuesday of the month 5:00 to 7:00 pm. An honorarium of $30 per meeting will be provided. There will be options for additional involvement in various chosen working groups.   Application Process: To be considered for these positions, provide a letter to Ruth MacLennan regarding your interest in the committee and the experience that you will bring by Friday March 27th. The first meeting will be Tuesday April 7th.  Ruth MacLennan Rehabilitation and Recovery Program Manager	  CMHA Vancouver-Burnaby Branch	  Tel: 604-872-4902 ext. 226 / Fax: 604-872-5934	  “The	  key	  to	  fulfillment	  is	  to	  work	  from	  your	  greatest	  strengths,	  with	  passion,	  in	  the	  service	  of	  purpose.”	  60Appendix C— Participant and Family Voice: World Café Vancouver RolesRole At event Shareen Holger Jody Brenda Gavein Paul Karen Christine Janessa Katy Regina Ryanne Ruth Justin Spencer Maery AaronFood checkers  y + + + +Greeters  y + + +Food prep n + + + + +Room setup y + + + + + + + +Printing n +Decorations  y + + + + +Thank you card n +Post‐event docs n + + + +Theme listeners  yTable facilitators y + + + + +Visual recorders y +Digital recorders yCaretaker y +Overseer  y & n +Host/MC y +Signage  n +Promo poster n +Clean‐up crew y + + + + + + + + + + + + + + + + +Social media  ny & n61Role At event Shareen Holger Jody Brenda Gavein Paul Karen Christine Janessa Katy Regina Ryanne Ruth Justin Spencer Maery AaronFood checkers  y + + + +Greeters  y + + +Food prep n + + + + +Room setup y + + + + + + + +Printing n +Decorations  y + + + + +Thank you card n +Post‐event docs n + + + +Theme listeners  yTable facilitators y + + + + +Visual recorders y +Digital recorders yCaretaker y +Overseer  y & n +Host/MC y +Signage  n +Promo poster n +Clean‐up crew y + + + + + + + + + + + + + + + + +Social media  ny & nAppendix C— Participant and Family Voice: World Café Vancouver Roles62Appendix D—Participant and Family Voice: World Café Agenda		Participant	and	Family	Involvement:		World	Café	Agenda																				Doors	Open	(15	minutes)		 Participants,	family	members,	and	staff	arrive	and	are	given	time	to	mingle,	get	food,	and	find	a	seat.	PFCV	committee	members	and	SCARP	student	table	facilitators	encourage	people	to	sit	at	mixed	tables.		Welcome	and	Introductions	(10	minutes)	 Host	introduces	the	concept	of	participant	and	family	member	involvement	and	the	Mental	Health	Strategy	for	Canada	and	introduces	the	CMHA‐VF	and	talks	about	the	amalgamation	of	lower	mainland	CMHA	branches.		Why	now	is	also	explained?		Introduction	to	the	Conversation	(5	minutes)		 Reminds	people	of	the	World	Café	guidelines	and	that	we	want	to	hear	from	everyone.	 Vision	for	CMHA‐VF	in	that	participants	and	family	members	play	a	decision‐making	role	in	guiding	the	agency,	through	planning,	program	development,	and	policy	development.		Table	One	Small	Group	Dialogue	(25	minutes)	 Introduction	of	individuals	at	the	table	(5minutes).	o Name	o Staff/Participant/Family	and	CMHA‐VF	program	association		o Why	did	you	come	today?	 Facilitators	at	tables,	lead	dialogue	and	pose	questions	to	encourage	the	sharing	of	ideas,	wisdom	and	listening.	Note	takers	record	conversation.		Table	One	Recap:	Harvest	of	Ideas	(15	minutes)	 Host	asks	each	table	to	contribute	ideas.	 Graphic	facilitation	active.	 Host	asks	people	to	move	to	new	table	and	sit	with	people	that	they	do	not	know.			Table	Two	Small	Group	Dialogue	(25	minutes)	 Introduction	of	individuals	at	the	table	(5minutes).	o Name	o Staff/Participant/Family	and	CMHA‐VF	program	association		o Why	did	you	come	today?	 Facilitators	at	the	tables,	lead	dialogue	and	pose	questions	to	encourage	the	sharing	of	ideas,	wisdom	and	listening.	Note	takers	record	conversations.		Knowledge	Harvest	(20	minutes)	 Host	asks	each	table	to	contribute	ideas	and	encourages	new	people	to	speak.	 Graphic	facilitation	is	active	and	people	are	asked	if	their	ideas	are	reflected	in	the	posters.	 Guests	are	asked	to	reflect	on	the	process	and	open	room	dialogue,	writing	and	note	taking	are	all	encouraged.			Next	Steps	and	Invitation	to	Continued	Involvement	(15	minutes)	 Point	out	ideas	for	next	steps.	 Promote	next	event.		 Thank	you	and	recognition	of	all	involved.			63Appendix E—Participant and Family Involvement:  Things to Consider• Create a charter with other participants—stating your promise to offer opportunities of how to be involved—then display this across programs • Conduct regular participant meetings across all program and service levels • Conduct ‘meet-the-manger’ sessions • Involve participants in the audit, both internal and external sources • Use regular participant satisfaction questionnaires—get participants involved in the design and delivery • Use questionnaires about up and coming changes and new project ideas • Use a 360 degree appraisal approach • Ensure there is a complaints procedure which is active, up to date and transparent • Involve participants on a regular basis, in policy review   • Get participants to run their own meetings—training can be offered on how to do this. • Recruit participants for the Board of Directors  • Involve participants in the recruitment of new staff  • Encourage participants to access training alongside staff • Use group peer support—do participants want to set up a self-help group? • Explore volunteer opportunities available to participants—how can participants become volunteers either within your organization or externally? • Involve participants in the delivery of training • Get participants involved in delivering conferences and presentations—could get a participant to talk at an AGM or present to the Board of Directors • Involve participants in leaflet design and branding of the organization—remember to be aware of whom to appeal   • Get participants to help with fundraising • Introduce peer research—are you conducting research to help develop your services? Could you train participants to become peer researchers?  • Involve participants in creative groups—newsletters, interactive websites, forums, video, drama, arts • Take the message into the community—if you deliver education in the community, would a participant like to be a part of organized sessions?   From CMHA The 2014 Engage People with Lived Experience of Mental Health Conditions and Addictive Behaviors Workbook, Adapted from  	  64  CMHA-VF Participant: Hiring Committee    The Canadian Mental Health Association Vancouver Fraser (CMHA-VF) is looking for a Participant to play a role in hiring of new staff. The CMHA-VF is working to ensure that participants and family have meaningful involvement with the agency. In order to achieve this goal, the Participant and Family Voice Committee has recommended that the hiring process for new staff involve participants working in partnership with program staff to interview and identify appropriate candidates. The participant will be involved in the interviewing process to advise, recommend, and review resumes and attend the interviews of the candidates who have been selected for the interview process.   The successful applicant for the contract will: • Attend hiring committee meetings, and the interviews of identified candidates. • Read job descriptions, interview questions, and resumes for selected candidates.  • Represent the agency in a professional manner. • Participate collaboratively in-group decision-making. • Articulate interests, concerns, and perspectives on the candidates being considered for review. • Maintain confidentiality and complete a confidentially agreement.  • Maintain an open mind, and work as a team member.  Compensation:  This position will run Day/Month to Day/Month. Ideally, the participant chosen should be available for the full interview process. An honorarium of $30 per recruitment session attended will be provided.    Application Process: To be considered for this position, provide a letter to the Participant and Family Voice Committee, Attention: Ruth MacLennan, explaining your interest. The interviewing process will begin Day/Month.  Ruth MacLennan Rehabilitation and Recovery Program Manager	  CMHA Vancouver-Burnaby Branch	  Tel: 604-872-4902 ext 226 / Fax: 604-872-5934 “The	  key	  to	  fulfillment	  is	  to	  work	  from	  your	  greatest	  strengths,	  with	  passion,	  in	  the	  service	  of	  purpose.”	  	  Appendix F—Participant and Family Voice: Hiring Committee Panel65Appendix G—Participant and Family Voice: 2016 Terms of ReferenceParticipant and Family Voice Committee Terms of ReferencePurpose/GoalsGuiding PrinciplesReporting Relationships and AccountabilityParticipant and Family Member Involvement Steering and Advisory Committee• Support the Canadian Mental Health Association Vancouver Fraser to foster the engagement of participants and family members in planning, decision-making and program development, evaluation and research in order to contribute to our healthy and inclusive community.• The committee will provide consistent participant and family member input on CMHA VF Quality Improvement Outcomes.Committee members will:• Build relationships by working together to act as a bridge for participants and family members by communicating information to the larger community. • Participate in collaborative decision-making by sharing their knowledge, insights, skills and experience with each other, Agency leadership and the Board of Directors.• Be reflective, by interpreting process in a way that honors lived experience as well as learning from each other’s different points of view.• Be committed to open dialogue and collaborate with each other, and the Agency in order to provide feedback and recommendations that best meet the needs of CMHA-VF.• Take action to ensure that stigma is addressed by focusing on the key themes to address stigma including education, connection, diversity of roles, skills and assets and family.• Committee membership will reflect inclusivity and equality of the broad community to include diversity in gender, language, religious/spiritual, ethno-cultural, and rural-urban communities and bring both personal and professional experience. The Participant & Family Voice Committee is accountable to Agency leadership and the Board of Directors. ResponsibilitiesReduce stigma through:• Education: ensure that staff training and educational opportunities are open to participant and family members, clarify Agency language, and host educational events and World Cafés• Connection: collect contact information for participants and family who are involved or are interested in involvement, host open houses, world cafés, and social events to foster connection.66Meeting Frequency: Monthly• Diversity of roles: create roles for participants and family members on all Agency committees and Board of Directors, create and maintain low barrier opportunities for involvement, recruit and support participants in communication and public relations • Skills and assets: recognize participant contributions to the Agency, appreciate skills and assets and encourage skill development through involvement and in programs.• Family inclusion: Invite and welcome family into the Agency, host an Annual family open house, and develop Agency material for family.• Collaborate with other advisory and governance committees within the Agency (ECHO & Peer Navigator)• Disseminate information to stakeholders: Maintain a shared folder that incudes meeting minutes and agenda, mental health literature, reports and promotional materials produced. Give quarterly feedback in regards to the status of participant and family involvement to the Agency.MembershipCommittee Chair—Ruth MacLennan, Co-Chair—participant Composition—5 participants, 2 family members, 3 (1 alternate) staff, 2 board members and 1 Agency volunteer/studentTerm—1 year with 1 year renewal Location—Rotation at CMHA-VF sites Vancouver, Burnaby, and New Westminster Date April 12, 2016Appendix G—Participant and Family Voice: 2016 Terms of Reference6768Appendix H—Logic Model: Theory of ChangePURPOSE• The Agency wishes to foster the engagement of participants and family members in planning, decision-making and program development in order to contribute to a healthy and inclusive communityCONTEXTSTarget (Group/Service) Implementation/Activities ReachAgencyParticipants,Family membersStaffLeadershipBoard of Directors TrainersEducatorsCommunity MembersFundersPromoteAwareness and knowledge of participant and family member involvement including the PFVC, PFVC events, and resources.MembersParticipantsFamily members & AdvocatesAdministratorsStaffEducatorsVolunteersConsultants StudentsLocalMental Health Agencies, Mental Health Service Providers,Medical Community,Community Planners Universities Province of BCDevelopGuiding principles and framework for implementation and evaluation of participant and family member involvement.ResourcesExpertise of participantsExpertise of family membersExpertise of staffExpertise of Board MembersExpertise of people with lived experienceFunding, internal Funding externalEvidence based practiceEvidence based literatureCMHA facilities Community facilitiesNationalCMHA NationalMental HealthCommission of CanadaPublic Health CanadaCommunicateAcross the mental health system to facilitate collaboration on events, projects, planning efforts and the resources of different agencies69• The committee will provide consistent participant and family member input on CMHA-VF Quality Improvement Outcomes (Strategic  Plan Goal #2 - Ensuring Quality Services) what does this say?—Not really what this goal says it says “we will take our best programs and roll them out in other parts of the country” what does this mean for this programIMPACTSInputs (Lead)PFVC Participant MembersPFVC Report PFVC Guiding PrinciplesPFVC Recommendations $2800 honorarium budgetTBD education budgetTBD activities budget  Participant and family member contact listParticipant and family member role descriptions Outputs (Tasks)Monthly committee meetingParticipants and family members on staff hiring panelsParticipants and family m e m b e r s  o n  a g e n c y committeesParticipants and family members on the Board of Directors PFVC Education eventsPFVC Connection eventsPFVC World CafésParticipants and family members take part in CMHA-VF professional development Participants review feedback and provide input on program outcomes, strategic planning and program development OutcomesShort-TermStigma is reduced by having participants, family members and staff work collaboratively Participants and family m e m b e r s  s e e k i n g involvement will know about opportunities Participant and family member contacts will connect people to the processParticipants will receive trainingIncrease number of participants taking part in the AgencyFamily members involvedCollaboration with other advisory and governance committees within the CMHA-VF and mental health community Policies are created to ensue that information is shared across the AgencyProvide feedback to the organizat ion ab out program outcomes Long-TermE du c at i on a l  e v e nt s and opportunities for part icipants,  family members, staff and the CMHA-VF community a t  l a r g e  p r o m o t e understanding of mental health issues and reduce stigmaActivities, initiatives and events that create and support community connections, facilitate participant and family involvement in the branch Participants and family members feel confident to contribute and paly a leaderships role in p l an n i ng ,  d e c i s i on making and program development Evaluation system in place to ensure meaningful involvement Appendix H—Logic Model: Theory of Change70


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