Centre for Research and Education in Human Services The Meaningful Participation of Consumers on Mental Health Agency Boards Experiential Power and Models

Centre for Research and Education in Human Services

The Meaningful ParticipationThe Meaningful Participationof Consumers on Mental of Consumers on Mental Health Agency BoardsHealth Agency Boards

Experiential Power and Models of Experiential Power and Models of GovernanceGovernance

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

[email protected] www.crehs.on.ca

© Presentation not to be used without permission of author


A paradigm shift in the mental health A paradigm shift in the mental health systemsystem

A shift away from traditional illness-based treatment toward social and community integration and natural community supports


Expectations of Mental Health ReformExpectations of Mental Health Reform

Policy development and program delivery that is influenced by consumers

More consumer choice and participation in decision making


A Basic QuestionA 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 helps consumers to access and use these resources? What factors hinder accessing and using these resources?

General research questions – Study 1General research questions – Study 1


The Meaningful Participationof 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


What is Meaningful Participation?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 (RP)

• Representative participation involves the gathering, distillation, and communication of diverse ideas that exist within the consumer community.


Participatory Competence (PC)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 (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 (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

ParticipatoryCompetence

PersonalValidation

Perceived Influence

The interrelationship of the four major components of meaningful participation


From power to participationFrom power to participationUnderstanding 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 Resources5 Main Power Resources

Knowledge & informationSkillsRepresentationSocial supportMaterial resources


a



PersonalValidation

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


Key factors impacting power & Key factors impacting power & participationparticipation

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 context External context


Sample – Study 1 Sample – Study 1

In total, 13 consumers, 5 professionals & 4 Executive Directors (ED) from boards of 5 Ontario CMHA branches.


InterviewsInterviews

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


Study 1 Results: HighlightsStudy 1 Results: Highlights


Characterizing Meaningful ParticipationCharacterizing 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 Meaningful Participation as Representing & InfluencingRepresenting & 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 Meaningful Participation as Competence & ValidationCompetence & 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: HighlightsRepresentative 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: HighlightsRepresentative 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 RPThe 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.”


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: Participatory Competence: Experiential vs. Expert Knowledge Experiential vs. Expert Knowledge


Participatory Competence: Participatory Competence: Experiential vs. Expert Knowledge 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: Negative Communication Dynamics: Lowered validation and PCLowered 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: Positive Communication Dynamics: Heightened validation and PCHeightened 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 to the support that you get when you voice your opinions.”


Perceived influencePerceived influencePerceived 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 2Building 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.


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 2General 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 modelsBoard 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 modelsBoard 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…”


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 Results: HighlightsStudy 2 Results: Highlights


Consumers’ role fulfillmentConsumers’ role fulfillment

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


PolicyPolicyConsumers on

policy boards felt best able draw on experiential knowledge when policy issues were being discussed.

ManagementManagementConsumers on

management boards felt least able to draw on experiential knowledge when management issues were being discussed

Role Clarity Role Ambiguity


PolicyPolicyConsumers 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”


ManagementManagementConsumers 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.”


PolicyPolicyHigher opportunity to

draw on experiential knowledge:

ManagementManagementLower 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


PolicyPolicy Best able to represent the

interests of other consumers when discussing policy, community issues and/or personal experiences

ManagementManagement Best able to

represent the interests of other consumers in relation to direct service issues. General difficulty in representing others apparent.


ManagementManagement 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”


4 findings I did not expect…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


Implications for PracticeImplications for PracticePolicy 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



• Material

Service Agency Board

Membership

Practical accom-dations

Board education,

training

Proportion of consumermembers

Communi-cation

dynamics

Key factors impacting power &

participation

Recruitment practices



PersonalValidation

Perceived Influence

Resources from constituency

Personal resources & experiences

Consumer-led training &

skill development

Ongoing information

sharing

Leadership role

Social support of members


participation



Membershipa



• Material


Board education,

training


Communi-cation

dynamics


participationRepresentative

Participation


PersonalValidation

Perceived Influence




Membershipa



• Material


Board education,

training


Communi-cation

dynamics



Participation


PersonalValidation

Perceived Influence




Membershipa



• Material


Board education,

training


Communi-cation

dynamics



Participation


PersonalValidation

Perceived Influence




Membershipa



• Material


Board education,

training


Communi-cation

dynamics



Participation


PersonalValidation

Perceived Influence




Membershipa



• Material


Board education,

training


Communi-cation

dynamics



Participation


PersonalValidation

Perceived Influence



Citizen group membership,

linkages a



• Material

Consumer-led training &

skill development

Ongoing information

sharing

Leadership role

Social support of members



Participation


PersonalValidation

Perceived Influence

Resources from constituency



The Community Resource BaseThe Community Resource Base

Generic community

services & groups

Family & friendsConsumer groups

& organizations

Mental health services

PersonIncome

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”


Board Governance ModelsBoard Governance ModelsThere 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


Interview data analysesInterview data analyses

Three levels of data analysis:Descriptive coding Interpretive codingPattern coding

Documents

Centre for Research and Education in Human Services The Meaningful Participation of Consumers on Mental Health Agency Boards Experiential Power and Models