Title: The Meaningful Participation of Consumers on Mental Health Agency Boards Experiential Power and Mode
1The Meaningful Participationof Consumers on
Mental Health Agency BoardsExperiential Power
and Models of Governance
D. Jason Newberry May 2004
jason_at_communitybasedresearch.ca
2A paradigm shift in the mental health system
- A shift away from traditional illness-based
treatment toward social and community integration
and natural community supports
3Expectations of Mental Health Reform
- Policy development and program delivery that is
influenced by consumers - More consumer choice and participation in
decision making
4A Basic Question
- Given that consumer participation on governing
boards has increased during mental health
reform. - is consumer participation on these boards
meaningful?
5General 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?
6The Meaningful Participation of consumer members
7What 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
8Representative Participation (RP)
- Representative participation involves the
gathering, distillation, and communication of
diverse ideas that exist within the consumer
community.
9Participatory Competence (PC)
- Participatory competence involves contribution at
board meetings that is timely, relevant,
persuasive, balanced, well-articulated, informed,
etc
10Personal 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
11Perceived 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.
12The interrelationship of the four major
components of meaningful participation
Representative Participation
13From 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.
155 Main Power Resources
- Knowledge information
- Skills
- Representation
- Social support
- Material resources
16a
- Possession of relevant skills sets will be
related to perceptions of participatory competence
17Internal factors impacting power participation
- Practical accommodations
- Board education, training, information
- Proportion of consumer members
- Communication dynamics
18External factors impacting power participation
- Consumer-led training development
- Ongoing information sharing
- Leadership role
- Social support of group members
19Sample 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
20Interviews
- 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
21Study 1 Results Highlights
22Characterizing 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
23Meaningful 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.
24Meaningful 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)
25Representative 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.
27Representative Participation Highlights
- Formalized RP could be challenged by other board
members. - Personal experiences that are generalized to an
issue can also be challenged.
28I'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
29The 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
30Participatory 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.
31Participatory 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.
32Negative 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?
34Positive 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.
36Perceived 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.
37Building 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.
38General 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?
39Board 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
40Board 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
41Theoretical 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
42Theoretical 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
43Study 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.
44Study 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
45Study 2 Results Highlights
46Consumers role fulfillment
- Generally, central role was to provide
experiential insights regarding mental health,
the agency, and services in order to represent
other consumers.
47Policy
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
48Policy
- 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
49Management
- ...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
50Policy
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.
51Policy
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.
534 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
54Limitations
- Low proportions of total board complement
- Professionals perceptions of consumers in
general - Mono-method
- The missing sample
55Implications 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
56Citizen group membership, linkages
Service Agency Board Membership
Resources from constituency
Personal resources experiences
Representative Participation
57The 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
59MP 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.
60Theoretical impact of governance models
Policy Governance
Role Clarity
61Theoretical impact of governance models
Management Governance
Role Ambiguity