The Meaningful Participation of Consumers on Mental Health Agency Boards Experiential Power and Models of Governance D. Jason Newberry May 2004

A paradigm shift in the mental health system A shift away from traditional illness- based treatment toward social and community integration and natural community supports

Expectations of Mental Health Reform Policy development and program delivery that is influenced by consumers More consumer choice and participation in decision making

A Basic Question Given that consumer participation on governing boards has increased during mental health reform…. “…is consumer participation on these boards meaningful?”

What is meaningful participation? What resources, i.e., forms of power, are available to consumers that serve to enhance different aspects of meaningful participation? What factors serve to enhance or inhibit the acquisition and/or expression of these resources? General research questions – Study 1

The Meaningful Participation of consumer members Key factors: Organizational, interpersonal, personal Power resources available to consumer members Propositions: Key factors affect the “use” of power resources – their “acquisition” and “expression” Propositions: Acquisition and expression of resources affects the meaningful participation of consumer members

What is Meaningful Participation? The literature on psychological, collective, and organizational empowerment The literature on citizen participation and consumer participation specifically. A working definition of Meaningful Participation (MP) was developed from: Four components of Meaningful Participation were proposed

Representative Participation (RP) Representative participation involves the gathering, distillation, and communication of diverse ideas that exist within the consumer community.

Participatory Competence (PC) Participatory competence involves contribution at board meetings that is timely, relevant, persuasive, balanced, well-articulated, informed, etc

Personal Validation (PV) Personal Validation of consumers involves a sense of worth to board, feelings of being listened to, and accepted as a full and equal member

Perceived Influence (PI) Perceived influence is considered present when there is evidence that a consumer has been heard, where other members sit up and listen, where debate and dialogue is informed and stimulated by the individual, focus of discussion changes, etc.

Representative Participation Participatory Competence Personal Validation Perceived Influence The interrelationship of the four major components of meaningful participation

From power to participation Understanding meaningful participation – what may hinder it and how it may be optimized – requires understanding power relations. In the context of board participation, professional members have had more power than consumers….

Expert power – power gained from professional expertise, training, status Legitimate power– power granted by being in an “accepted position” of authority Informational power - power from having access to information valued by others. (French & Raven, 1959; Raven, 1993) Bases of power can be thought of as “resources” E.g., Gruber & Trickett (1985) found that parents on a school board lacked power despite attempts to establish an egalitarian atmosphere.

5 Main Power Resources Knowledge & information Skills Representation Social support Material resources

a Representative Participation Participatory Competence Personal Validation Perceived Influence To the extent that consumers report having access to and opportunity to express knowledge and information, perceptions of participatory competence will be enhanced. Possession of relevant skills sets will be related to perceptions of participatory competence When there is knowledge of, and an association with, a larger constituency, consumers will report engaging in representative participation; RP will be observed by professionals To the extent that consumer board members feel socially supported on the board, feelings of personal validation will be reported Power Resources: Knowledge & information Skills Representation Social Support Material Propositions: Power resources & MP

Internal factors impacting power & participation Practical accommodations Board education, training, & information Proportion of consumer members Communication dynamics

External factors impacting power & participation Consumer-led training & development Ongoing information sharing Leadership role Social support of group members

Sample – Study 1 Boards of Governors from 5 Ontario CMHA branches In total, 13 consumers, 5 professionals & 4 Executive Directors (ED) At least 2 consumers,1 professional & the ED from each board participated Consumers were board members who disclosed to their board as users of mental health services & who served as “consumer representatives” Professionals had training/background relevant to agency and/or board operations

Interviews Semi-structured, following the features of the conceptual model. Focused on : – the goals of consumer participation and how attain them – each of the elements in the conceptual model

Study 1 Results: Highlights

Characterizing Meaningful Participation Participants endorsed the four components of meaningful participation as important The goals of consumer participation were associated with consumer influence and representation Emphasis on the importance of providing the “consumer experience”

Meaningful Participation as Representing & Influencing “I think the primary function is to serve as a feedback mechanism for consumers in the organization to the board about what the actual state of affairs is. But the second is a safeguard to ensure that anti-consumer policies and regulations are not enacted by the organization.”

Meaningful Participation as Competence & Validation To participate meaningfully involved a willingness/ability to be outspoken, stay on track, provide relevant input, communicate clearly, and remain up-to-date on board matters (participatory competence) Meaningful participation also appeared to require a supportive board atmosphere (personal validation)

Representative Participation: Highlights Most important factor affecting RP was an ongoing link to the consumer community in some way Formalized representation was uncommon – more common to “speak for others” by drawing on personal experiences combined with informal contact with other consumers

(re: RP)…“not necessarily actively, just from what you hear from your friends, what you see around you. I've been in the hospital maybe fifteen times so I've seen a lot, I know. I know what happens, where the problems are.”

Representative Participation: Highlights Formalized RP could be challenged by other board members. Personal experiences that are generalized to an issue can also be challenged.

“I'll challenge from the consumer/survivor perspective something that they want….and I'll be told “well its not really you, its these other people over here who have a serious mental health issue.” That's a lovely little game where you get to decide right on the spot whether or not you're willing to prove that you are seriously mentally ill and discredit yourself accordingly…”

The impact of RP When consumers engaged in RP, perceived influence was enhanced: “ …that’s what you do, you sort of diversify it and also like it's the old thing about safety in numbers. You can say there's a number of consumers that are experiencing this. That's more power.... I think it does influence more, just by the fact of numbers. Participatory competence appeared to help consumers engage in representative participation

Consumers’ felt competent when they were able to draw on their own experiential knowledge “And someone says “well why don't they stay on their medication?” Someone who has absolutely no experience with these kinds of pharmaceuticals. I can stand up and say because they feel bloody awful.” Participatory Competence: Experiential vs. Expert Knowledge

Consumers’ did not feel competent when discussions oriented around expert knowledge “There were times where, on the administrative level particularly that I wouldn't be very knowledgeable about what was being discussed…those kinds of things you felt like you were sort of rubber stamping and you didn't really know the ins and outs…it's around subject matter.”

Negative Communication Dynamics: Lowered validation and PC When occurring, professional intimidation, dismissiveness, and a “professionalized discourse” lowered feelings of validation and levels of contribution

“…there's been many times where - not just myself, but other consumers - where we've tried to speak up and we've sort of been overridden which gives you a real...we're no value here. Why are we here anyways?”

Positive Communication Dynamics: Heightened validation and PC When negative communication dynamics were less frequent, positive leadership qualities of the board were given as a reason. Sensitivity and acceptance was personally validating and enhanced PC Positive feedback was particularly important for meaningful participation

“…obviously there's a sense of confidence if you're knowledgeable about something...as long as you feel safe enough to express your opinions you'll do that. And so it's not so much really the participation related to the knowledge you have, but rather the participation related to the support that you get when you voice your opinions.”

Perceived influence Perceived influence co-occurred with participatory competence “Verbal passion” emerged as another way consumers appear to influence the board: “Well I don't mean angry in terms of rude and obnoxious. But angry in terms of remembering how hard it was to get from one minute to the next when you are in a serious depression and have people talk about long- term goals with people with depression.”

Building Study 2 Experiential knowledge and knowledge of the consumer community were crucial to MP. Together, I called this “Experiential Power” An unanswered question: “what affects the opportunity of consumers to express experiential power” There was evidence that models of board governance played a role.

Building on the results of Study 1: How do models of board governance impact the expression of consumers’ experiential power and therefore the meaningful participation of consumers on mental health agency boards? General research questions – Study 2

Policy governance boards: – do not become involved in operational, managerial tasks; observe a division between staff and the board – have one employee – the ED, who oversees staff – focus on philosophical values and vision of the organization, and policy development – Are concerned with “ends”, not means to those ends – are typically smaller in size, with few committees – focus on consensus building, “one voice” Board governance models

Management governance boards: – focus on day-to-day operations and management (reviews & approves) – concerned with “means” – board employs all staff – committee driven – reactive focus on current issues – majority decision focus – usually large boards Board governance models

Theoretical impact of governance models Policy Governance Experiential knowledge privileged, relevant Expert knowledge less relevant Consensus building, discussion Smaller board size; few committees Greater opportunity to express experiential power Role Clarity “Yes, I think that when you talk about practical, philosophical things…survivors can identify how it affected their lives and relay that information to the board and that was a conversation....they could begin to engage....when the board governance changed there was "this is my world". Because you brought everything to a higher level of a value base, they could engage…”

Theoretical impact of governance models Management Governance Experiential knowledge less relevant Expert knowledge privileged, relevant Professional discourse common Larger board size; committees Less opportunity to express experiential power Role Ambiguity “...less interest in participating in administrative trivial things that board members usually deal with. And often they felt that their experiences didn't validate their need to make a decision. So there was often a sense of conferring to the authorities, which would be the non-survivor members. The more administratively responsible, the less participation I think you get.”

Study 2 propositions: Boards would be distinguishable by the functional characteristics of the two board models There would be more opportunity for consumers to express experiential knowledge on policy boards vs. management boards Experiential knowledge would be associated with contribution to board discussions, confidence, and greater perceived influence Greater representative participation when engaged in policy level issues versus management level issues.

Study 2 description Follow up interviews with participants from Study 1 New interviews with members of two new boards ( 3 consumers, 4 professionals, 2 EDs ) Study 2 interviews focused on board structure/process/content, consumer roles, experiential knowledge, and meaningful participation

Study 2 Results: Highlights

Consumers’ role fulfillment Generally, central role was to provide experiential insights regarding mental health, the agency, and services in order to represent other consumers.

Policy Consumers on policy boards felt best able draw on experiential knowledge when policy issues were being discussed.Management Consumers on management boards felt least able to draw on experiential knowledge when management issues were being discussed Role Clarity Role Ambiguity

Policy Consumers on policy boards felt best able draw on express experiential knowledge when policy issues were being discussed. Role Clarity “…when policy is being discussed, when it relates to the policy about the delivery of service, then I would say that's where it would be more relevant for the other board members to kind of listen to what the consumer has to say”

Management Consumers on management boards felt least able to draw on experiential knowledge when management issues were being discussed Role Ambiguity “...often the work of the board is much more routine and boring to a lot of people, but its work that has to be done. I'm talking about, financial statements, review of certain things…so sometimes its not what they want to talk about.”

Policy Higher opportunity to draw on experiential knowledge:Management Lower opportunity to draw on experiential knowledge: Most competent when drawing on their experiential knowledge Most influential when drawing on their experiential knowledge Influence varied; less opportunity, so diminished influence. Most competent when drawing on experiential knowledge but more narrowly in reference to agency services

Policy Best able to represent the interests of other consumers when discussing policy, values, community issues, and/or personal experiencesManagement Best able to represent the interests of other consumers in relation to direct service issues. General difficulty in representing others apparent.

Management “Most people join the board because of some sense of cause or mission. Now when what you’re doing at board meetings is approving budgets or resolutions and making appointments and so on, you’re not soaring very high. And so I think some people may in time be disillusioned by it because it's not really inspiring”

4 findings I did not expect… Formalized representation is impractical and a double-standard Direct service representation is role- limiting, and may engender conflict of interest and perceptions of self-interest Board training may not enhance power because it does not enhance role clarity Sensitivity and openness are important, but ineffective in addressing structural barriers to participation

Limitations Low proportions of total board complement Professionals’ perceptions of consumers “in general” Mono-method “The missing sample”

Implications for Practice Policy governance: Provides benefits to governance independent of benefits to participation Facilitates role clarity – increases relevance of experiential knowledge & knowledge of the community that is consistent with expectations Diminishes expert power, negative communication dynamics Facilitates Meaningful Participation – participatory competence, representative participation, personal validation, and perceived influence Do you do anything, or have you done anything in the past to try and gain the knowledge and information you feel is necessary to participate on the board?” “As many hospitalizations as possible.” - Consumer board member

Citizen group membership, linkages a Power Resources: Knowledge & information Skills Representation Social Support Material Service Agency Board Membership Practical accom- dations Board education, training Proportion of consumer members Communi- cation dynamics Key factors impacting power & participation Recruitment practices Representative Participation Participatory Competence Personal Validation Perceived Influence Resources from constituency Personal resources & experiences Consumer- led training & skill development Ongoing information sharing Leadership role Social support of members Key factors impacting power & participation

The Community Resource Base Generic community services & groups Family & friends Consumer groups & organizations Mental health services Person Income Housing Work Education

Intimidation: We've had some of these people on the board, they're very well educated, they're very enunciated in vocabulary and I'm not. And I feel that it's intimidating and that I can't, I can't keep up to them… Dismissiveness/Domination: “…there's been many times where not just myself but other consumers, where we've tried to speak up and we've sort of been overridden which gives you a real...we're no value here. Why are we here anyways?” Professional discourse “Because of certain issues and not being a professional and maybe the way they're talking about the issue in professional terms, I may have a point that I want to come up with but I don't feel as qualified to say something”

MP as Representing & Influencing “There's nothing better than going right to the source. You know, we know what it's like to be in hospital, we know what it's like to be given medication, we know the side effects, we know how to navigate through the system, we know what the problems are, what the benefits are, we know the pros and the cons, the good and the bad.” “I think the primary function is to serve as a feedback mechanism for consumers in the organization, so they have feedback to the board about what's going on, what the actual state of affairs is. But the second is a safeguard to ensure that anti-consumer policies and regulations are not enacted by the organization.”

Theoretical impact of governance models Policy Governance Experiential knowledge privileged, relevant Expert knowledge less relevant Consensus building, discussion Smaller board size; few committees Greater opportunity to express experiential power Role Clarity

Theoretical impact of governance models Management Governance Experiential knowledge less relevant Expert knowledge privileged, relevant Professional discourse common Larger board size; committees Less opportunity to express experiential power Role Ambiguity