1. Centre for Research and Education in Human Services The Meaningful Participation of Consumers on Mental Health Agency Boards Experiential Power and Models of Governance Jason Newberry, Ph.D. The Centre for Research & Education in Human Services 73 King St. W., Suite 202 Kitchener, ON N2G 1A7 p 519 741 1318 f 519-741-8262 jason@crehs.on.ca www.crehs.on.cawww.crehs.on.ca © Presentation not to be used without permission of author

2. Centre for Research and Education in Human Services 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

3. Centre for Research and Education in Human Services Expectations of Mental Health Reform Policy development and program delivery that is influenced by consumers More consumer choice and participation in decision making

4. Centre for Research and Education in Human Services A Basic Question Given that consumer participation on governing boards has increased during mental health reform…. “…is consumer participation on these boards meaningful?”

5. Centre for Research and Education in Human Services 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 helps consumers to access and use these resources? What factors hinder accessing and using these resources? General research questions – Study 1

6. Centre for Research and Education in Human Services 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 use Propositions: Acquiring and using power resources affects the meaningful participation of consumer members

7. Centre for Research and Education in Human Services 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

8. Centre for Research and Education in Human Services Representative Participation (RP) Representative participation involves the gathering, distillation, and communication of diverse ideas that exist within the consumer community.

9. Centre for Research and Education in Human Services Participatory Competence (PC) Participatory competence involves contribution at board meetings that is timely, relevant, persuasive, balanced, well-articulated, informed, etc

10. Centre for Research and Education in Human Services 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

11. Centre for Research and Education in Human Services 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.

12. Centre for Research and Education in Human Services Representative Participation Participatory Competence Personal Validation Perceived Influence The interrelationship of the four major components of meaningful participation

13. Centre for Research and Education in Human Services 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….

14. Centre for Research and Education in Human Services 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.

15. Centre for Research and Education in Human Services 5 Main Power Resources Knowledge & information Skills Representation Social support Material resources

16. Centre for Research and Education in Human Services a Representative Participation Participatory Competence Personal Validation Perceived Influence To the extent that consumers report having knowledge & information, and an opportunity to use it, perceptions of participatory competence would 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

17. Centre for Research and Education in Human Services Key factors impacting power & participation Practical accommodations Board education, training, & information Proportion of consumer members Communication dynamics Consumer-led training & development Ongoing information sharing Leadership role Social support of group members Internal contextExternal context

18. Centre for Research and Education in Human Services Sample – Study 1 In total, 13 consumers, 5 professionals & 4 Executive Directors (ED) from boards of 5 Ontario CMHA branches.

19. Centre for Research and Education in Human ServicesInterviews Semi-structured, following the features of the conceptual model. Focused on : – the goals of consumer participation and how to attain them – each of the elements in the conceptual model

20. Centre for Research and Education in Human Services Study 1 Results: Highlights

21. Centre for Research and Education in Human Services 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”

22. Centre for Research and Education in Human Services 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.”

23. Centre for Research and Education in Human Services 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)

24. Centre for Research and Education in Human Services 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

25. Centre for Research and Education in Human Services (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.”

26. Centre for Research and Education in Human Services Representative Participation: Highlights Formalized RP could be challenged by other board members. Personal experiences that are generalized to an issue can also be challenged.

27. Centre for Research and Education in Human Services “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…”

28. Centre for Research and Education in Human Services 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.”

29. Centre for Research and Education in Human Services 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

30. Centre for Research and Education in Human Services 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.”

31. Centre for Research and Education in Human Services Negative Communication Dynamics: Lowered validation and PC When occurring, professional intimidation, dismissiveness, and a “professionalized discourse” lowered feelings of validation and levels of contribution

32. Centre for Research and Education in Human Services “…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?”

33. Centre for Research and Education in Human Services 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

34. Centre for Research and Education in Human Services “…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 to the support that you get when you voice your opinions.”

35. Centre for Research and Education in Human Services 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.”

36. Centre for Research and Education in Human Services 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 use experiential power” There was evidence that models of board governance played a role.

37. Centre for Research and Education in Human Services 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

38. Centre for Research and Education in Human Services 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

39. Centre for Research and Education in Human Services 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

40. Centre for Research and Education in Human Services 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

41. Centre for Research and Education in Human Services “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…”

42. Centre for Research and Education in Human Services 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

43. Centre for Research and Education in Human Services “...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.”

44. Centre for Research and Education in Human Services Study 2 propositions: 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.

45. Centre for Research and Education in Human Services 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 models, consumer roles, experiential power, and meaningful participation

46. Centre for Research and Education in Human Services Study 2 Results: Highlights

47. Centre for Research and Education in Human Services Consumers’ role fulfillment Generally, central role was to provide experiential insights regarding mental health, the agency, and services in order to represent other consumers.

48. Centre for Research and Education in Human ServicesPolicy 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

49. Centre for Research and Education in Human ServicesPolicy Consumers on policy boards felt best able draw on express experiential knowledge when policy issues were being discussed. Role Clarity “…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”

50. Centre for Research and Education in Human ServicesManagement 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.”

51. Centre for Research and Education in Human Services 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

52. Centre for Research and Education in Human ServicesPolicy Best able to represent the interests of other consumers when discussing policy, 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.

53. Centre for Research and Education in Human ServicesManagement Best able to represent the interests of other consumers in relation to direct service issues. General difficulty in representing others apparent. “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”

54. Centre for Research and Education in Human Services 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

55. Centre for Research and Education in Human Services Limitations Low proportions of total board complement Professionals’ perceptions of consumers “in general” Mono-method “The missing sample”

56. Centre for Research and Education in Human Services 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

57. Centre for Research and Education in Human Services 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

58. Centre for Research and Education in Human Services 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

59. Centre for Research and Education in Human Services Service Agency Board Membership a Power Resources: Knowledge & information Skills Representation Social Support Material Practical accom- dations Board education, training Proportion of consumer members Communi- cation dynamics Key factors impacting power & participation Representative Participation Participatory Competence Personal Validation Perceived Influence Personal resources & experiences

60. Centre for Research and Education in Human Services Service Agency Board Membership a Power Resources: Knowledge & information Skills Representation Social Support Material Practical accom- dations Board education, training Proportion of consumer members Communi- cation dynamics Key factors impacting power & participation Representative Participation Participatory Competence Personal Validation Perceived Influence Personal resources & experiences

61. Centre for Research and Education in Human Services Service Agency Board Membership a Power Resources: Knowledge & information Skills Representation Social Support Material Practical accom- dations Board education, training Proportion of consumer members Communi- cation dynamics Key factors impacting power & participation Representative Participation Participatory Competence Personal Validation Perceived Influence Personal resources & experiences

62. Centre for Research and Education in Human Services Service Agency Board Membership a Power Resources: Knowledge & information Skills Representation Social Support Material Practical accom- dations Board education, training Proportion of consumer members Communi- cation dynamics Key factors impacting power & participation Representative Participation Participatory Competence Personal Validation Perceived Influence Personal resources & experiences

63. Centre for Research and Education in Human Services Service Agency Board Membership a Power Resources: Knowledge & information Skills Representation Social Support Material Practical accom- dations Board education, training Proportion of consumer members Communi- cation dynamics Key factors impacting power & participation Representative Participation Participatory Competence Personal Validation Perceived Influence Personal resources & experiences

64. Centre for Research and Education in Human Services Citizen group membership, linkages a Power Resources: Knowledge & information Skills Representation Social Support Material Consumer- led training & skill development Ongoing information sharing Leadership role Social support of members Key factors impacting power & participation Representative Participation Participatory Competence Personal Validation Perceived Influence Resources from constituency Personal resources & experiences

65. Centre for Research and Education in Human Services The Community Resource Base Generic community services & groups Family & friends Consumer groups & organizations Mental health services Person Income Housing Work Education

66. Centre for Research and Education in Human Services 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”

67. Centre for Research and Education in Human Services Board Governance Models There were functional differences between boards that were consistent with the defining characteristics of management & policy boards: 2 boards had a management focus 3 boards had a policy focus 1 board was hybrid, but was more policy focused 1 board used to be management focused, but recently moved to a policy focus

68. Centre for Research and Education in Human Services Interview data analyses Three levels of data analysis: Descriptive coding Interpretive coding Pattern coding