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The Meaningful Participation of Consumers on Mental Health Agency Boards Experiential Power and Mode

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Title: The Meaningful Participation of Consumers on Mental Health Agency Boards Experiential Power and Mode


1
The Meaningful Participationof Consumers on
Mental Health Agency BoardsExperiential Power
and Models of Governance
D. Jason Newberry May 2004
jason_at_communitybasedresearch.ca
2
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
Expectations of Mental Health Reform
  • Policy development and program delivery that is
    influenced by consumers
  • More consumer choice and participation in
    decision making

4
A Basic Question
  • Given that consumer participation on governing
    boards has increased during mental health
    reform.
  • is consumer participation on these boards
    meaningful?

5
General research questions Study 1
  • 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?

6
The Meaningful Participation of consumer members
7
What is Meaningful Participation?
A working definition of Meaningful Participation
(MP) was developed from
  • The literature on psychological, collective, and
    organizational empowerment
  • The literature on citizen participation and
    consumer participation specifically.

Four components of Meaningful Participation were
proposed
8
Representative Participation (RP)
  • Representative participation involves the
    gathering, distillation, and communication of
    diverse ideas that exist within the consumer
    community.

9
Participatory Competence (PC)
  • Participatory competence involves contribution at
    board meetings that is timely, relevant,
    persuasive, balanced, well-articulated, informed,
    etc

10
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
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
The interrelationship of the four major
components of meaningful participation
Representative Participation
13
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
  • 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
5 Main Power Resources
  • Knowledge information
  • Skills
  • Representation
  • Social support
  • Material resources

16
a
  • Possession of relevant skills sets will be
    related to perceptions of participatory competence

17
Internal factors impacting power participation
  • Practical accommodations
  • Board education, training, information
  • Proportion of consumer members
  • Communication dynamics

18
External factors impacting power participation
  • Consumer-led training development
  • Ongoing information sharing
  • Leadership role
  • Social support of group members

19
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

20
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

21
Study 1 Results Highlights
22
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

23
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.

24
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)

25
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

26
  • (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.

27
Representative Participation Highlights
  • Formalized RP could be challenged by other board
    members.
  • Personal experiences that are generalized to an
    issue can also be challenged.

28
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
29
The impact of RP
  • When consumers engaged in RP, perceived influence
    was enhanced
  • thats 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

30
Participatory Competence Experiential vs.
Expert Knowledge
  • 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.

31
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
    discussedthose kinds of things you felt like you
    were sort of rubber stamping and you didn't
    really know the ins and outsit's around subject
    matter.

32
Negative Communication Dynamics Lowered
validation and PC
  • When occurring, professional intimidation,
    dismissiveness, and a professionalized
    discourse lowered feelings of validation and
    levels of contribution

33
  • 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?

34
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

35
  • 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.

36
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.

37
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.

38
General research questions Study 2
  •   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?

39
Board governance models
  • 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

40
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

41
Theoretical impact of governance models
Policy Governance
Yes, I think that when you talk about practical,
philosophical thingssurvivors 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
Role Clarity
42
Theoretical impact of governance models
Management Governance
...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.
Role Ambiguity
43
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.

44
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

45
Study 2 Results Highlights
46
Consumers role fulfillment
  • Generally, central role was to provide
    experiential insights regarding mental health,
    the agency, and services in order to represent
    other consumers.

47
Policy
Management
  • Consumers on policy boards felt best able draw on
    experiential knowledge when policy issues were
    being discussed.
  • Consumers on management boards felt least able to
    draw on experiential knowledge when management
    issues were being discussed

Role Clarity
Role Ambiguity
48
Policy
  • 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
  • Consumers on policy boards felt best able draw on
    express experiential knowledge when policy issues
    were being discussed.

Role Clarity
49
Management
  • ...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 thingsso
    sometimes its not what they want to talk about.
  • Consumers on management boards felt least able to
    draw on experiential knowledge when management
    issues were being discussed

Role Ambiguity
50
Policy
Management
  • Higher opportunity to draw on experiential
    knowledge
  • Lower opportunity to draw on experiential
    knowledge
  • Most competent when drawing on experiential
    knowledge but more narrowly in reference to
    agency services
  • Most competent when drawing on their experiential
    knowledge
  • Most influential when drawing on their
    experiential knowledge
  • Influence varied less opportunity, so diminished
    influence.

51
Policy
Management
  • Best able to represent the interests of other
    consumers when discussing policy, values,
    community issues, and/or personal experiences
  • Best able to represent the interests of other
    consumers in relation to direct service issues.
    General difficulty in representing others
    apparent.

52
  • Most people join the board because of some sense
    of cause or mission. Now when what youre doing
    at board meetings is approving budgets or
    resolutions and making appointments and so on,
    youre not soaring very high. And so I think some
    people may in time be disillusioned by it because
    it's not really inspiring

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

53
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

54
Limitations
  • Low proportions of total board complement
  • Professionals perceptions of consumers in
    general
  • Mono-method
  • The missing sample

55
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
56
Citizen group membership, linkages
Service Agency Board Membership
Resources from constituency
Personal resources experiences
Representative Participation
57
The Community Resource Base
58
  • 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

59
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.

60
Theoretical impact of governance models
Policy Governance
Role Clarity
61
Theoretical impact of governance models
Management Governance
Role Ambiguity
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