Peer Support: What Makes It Unique?
Citation:
Mead S., & MacNeil C,.
(2006). Peer Support: What Makes It Unique?
International Journal
of Psychosocial
Rehabilitation. 10 (2), 29-37.
Abstract
Peer support in mental
health
has recently gained significant attention. There is increasing talk
about
funding and credentialing, standards and outcomes. But what is peer
support and
how is it different than services, even services delivered by people
who
identify themselves as peers? In this paper we would like to present a
perspective on peer support that defines its difference and also
maintains its
integrity to the movement from which it came. We will offer some
thinking about
practice and evaluation standards that may help different types of peer
initiatives sustain real peer support values in action.
Introduction
Peer support for
people with similar life experiences (e.g., people who’ve lost
children, people
with alcohol and substance abuse problems, etc.) has proven to be
tremendously
important towards helping many move through difficult situations
(Reissman,
1989; Roberts & Rappaport, 1989). In
general, peer support has been defined by the fact that people who have
like
experiences can better relate and can consequently offer more authentic
empathy
and validation. It is also not uncommon for people with similar lived
experiences to offer each other practical advice and suggestions for
strategies
that professionals may not offer or even know about. Maintaining its
non-professional vantage point is crucial in helping people rebuild
their sense
of community when they’ve had a disconnecting kind of experience.
Peer support in
mental health however has a more political frame of reference. Whereas
some
support group’s form around the shared experience of illness, peer
support in
mental health grew out of a civil/human rights movement in which people
affiliated around the experience of negative mental health treatment.
(e.g.
coercion, over-medication, rights violations, as well as an
over-medicalized
version of their “story”). In other words, the shared experience has
had more
to do with responses to treatment than the shared experience of mental
illness.
The Independent Living Movement has been the quintessential guide to
this way
of thinking.
The Independent
Living Movement grew out of a reaction to social, physical, and
treatment
barriers for people primarily with physical disabilities. It arose at a
time
when other movements were gaining headway in establishing rights for
oppressed
groups of all kinds. Through a strategic advocacy initiative, the
Independent
Living Movement focused on three general areas: The first, to enforce
the civil
and benefit rights for people with disabilities; second, to develop a
way of
thinking created by people with disabilities; and third, to create
alternative
services and advocacy centers (Deegan, 1992; DeJong, 1979).
Dejong (1979)
writes:
According
to the IL paradigm, the problem does not reside in the individual but
often in
the solution offered by the rehabilitation paradigm- the
dependency-inducing
features of the …professional-client relationship…The locus of the
problem is
not the individual but the environment that includes not only
rehabilitation
process but also the physical environment and the social control
mechanism in
society-at large (pg 443).
In identifying
the critical elements of peer support Solomon (2004) reminds us,
“Consumer
provided services need to remain true to themselves and not take on the
characteristics of traditional mental health services (pg 8).” Campbell
(2004)
also notes that “consumer operated programs should present an
alternative
worldview (pg 32).” So what does it mean to stay true to itself, to
provide a
different worldview? Identifying skills and ingredients that support
this
difference will help in determining what constitutes “good outcomes”
for peer
programs. It will help us to become more self-evaluative and therefore
continuously build on emerging knowledge, and it will help us simply to
challenge, “how we’ve come to know what we know.”
Critical
Ingredients literature
There
have been many recent studies exploring the ‘critical ingredients’ of
peer
support. Findings are congruent with the IL framework and offer both
structure
and process standards (Holter et al., 2004; Solomon, 2004; Hardiman,
2004).
Structural standards are elements of peer initiatives that define the
basic
rules and how the group is constructed. They include being free from
coercion
(e.g. voluntary), consumer run and directed (both governmentally and
programmatically), an informal setting with flexibility,
non-hierarchical, and
non-medical approach (e.g. not diagnosing, etc) (Solomon, 2004; Salzer,
2002;
Holter et al., 2004; Clay, 2004; Campbell, 2004; Hardiman, 2004). Process standards are more like beliefs,
styles and values. They include:
- The peer principle
(finding affiliation with someone with similar life experience and
having an equal relationship)
- The helper principle
(the notion that being helpful to someone else is also self healing)
- Empowerment (finding
hope and believing that recovery is possible; taking personal
responsibility for making it happen)
- Advocacy
(self and system advocacy skills), choice and decision making
opportunities, skill development, positive risk taking, reciprocity,
support, sense of community, self help, and developing awareness
(Campbell, 2004; Clay, 2004).
While
these ingredients are clearly essential for maintaining a
non-professional
relationship, they also may fall short of describing how to provide a
true
alternative. This is where it becomes crucial that we begin to define
those
practice elements that really lead to different assumptions about our
relationships and ourselves, different ways of thinking about our
experience,
and ultimately define our unique and valuable role in the larger ‘help’
arena. We must ask ourselves:
·
What
is it that we need to offer in order
to help people begin to see things in a new way?
·
What
kinds of relationships really build
community?
·
How
can we construct reciprocal help so that it is not attached to any
particular
role or interpretation of the problem (e.g. a non-medical
interpretation of the
experience)?
Without thinking carefully about these
questions it is likely that peer support will be defined and judged
within the
context of the dominant paradigm. Further, if we can establish some
common
parameters for all of peer support, it will support peers working in
the
service delivery system with a unique and fully distinguishable
framework for
thinking. If this framework becomes more widely known and considered,
there
should be less likelihood of cooptation. In order to create this
identity and
way of thinking it may be useful for us to consider some of the skills
in peer
support that build different kinds of help and ultimately a different
recovery
outcome.
Achieving
difference
Recovery in
mental health has most often been defined as a process by which people
labeled
with mental illness regain a sense of hope and move towards a life of
their own
choosing (President’s New Freedom Commission Report, 2003). While this
definition on the surface seems obvious, what remains hidden is the
extent to
which people have gotten stuck in a medical interpretation of their
experiences. With this stuckness comes a worldview in which one is
constantly
trying to deal with their perception of what’s wrong with them instead
of
what’s wrong with the situation. In other words, even if I have hope of
moving
into a better life, I have been taught to pay a lot of attention to my
symptoms. This interpretation of my experiences leaves me constantly on
guard
for what might happen to me should I start to get ‘sick.’ Even with
recovery
skills (learning to monitor my own symptoms), I find myself creating a
life
that is ultimately guided by something inherently wrong with me. With
this
understanding, I may continue to see myself as more fragile than most,
and
different than ‘normal’ people. I then continue to live in community as
an
outsider, no matter what goals I have achieved.
Critical
learning
As we’ve
noted before, peer support in mental health grew out of an affiliation
based on
the shared experience of negative treatment.
Yet it is the medical model that has given us language,
self-definition,
an interpretive framework, and a notion of what it means to ‘help.’ In peer support we may pursue different kinds of
conversations in
which we start by thinking about “how we’ve come to know what we know.”
This
means actively examining how we have learned to name our experience,
what
utility the naming has now and create the ability to step back and
think about
how that naming may be keeping us stuck.
Following is a
typical example of interactions where peer roles often fall short in
opening up
this new conversation
Helpee: My depression is really acting up lately and
my doctor says
I need to increase my medication but I don’t really want to.
Peer Helper 1: Boy, when my depression starts, I
have to take a bit
more medication or I get in trouble.
Peer Helper 2: Don’t you remember the last time you
didn’t do what
the Doctor said and you ended up in the hospital?
Peer Helper 3 What do you need to say to the Doctor
so that he
doesn’t increase them?
Peer 1 is
clearly operating on learned assumptions about help and borders on
coercion.
Although the second helper’s role is more of an advocacy role, it is
still
presumed that the depression and the medication are the issue rather
than what
may have happened situationally. We don’t learn what constitutes
depression vs.
sadness or grief, what the medication does and doesn’t do, what
depression
means for that person, or about what is it that’s being medicated.
In a different
kind of conversation, new ways of thinking about the experience may
emerge. For
example:
Helpee; My depression is really acting up lately and
my doctor says
I need to increase my medication but I
don’t really want to.
Helper: What does it mean for you when you say that
your depression
is acting up?
Helpee: Well, I’m sleeping more and don’t really
feel like eating.
Helper: Boy I can remember a time when it seemed
like every time I
didn’t feel too great I would interpret it as depression. I saw it as
an
illness that I had which meant, at best, that I could only learn to
cope with
it.. I had learned to think about many
of my experiences and feelings through the lens of illness andI started
getting
kind of afraid of my own reactions. I’ve
had to work at thinking differently so now when I have some of those
reactions
I simply wonder if it’s just my body’s way of saying I’m exhausted or
frustrated.
Helpee: But the last time I felt like this I
ended up in the
hospital.
Helper: Was that helpful?
Helpee: Well they changed my medications around
and gave me shock
treatments…at least I wasn’t so depressed anymore.
Helper: I wonder if there are other ways you
could think about what
you might need when you’re feeling tired a lot and not wanting to eat…
Helpee: Like what?
Helper: Well sometimes when I’m doing something
new or uncomfortable
I don’t feel very confident. In the past being uncomfortable led to
going to
bed and not wanting to eat. Then I’d just call the Doctor and they’d
adjust my
medication. Now I try to simply let it be ok to be uncomfortable.
Instead of
going to bed I go to the gym, or I ask myself how others might react if
they
were feeling uncomfortable about doing something new.
Critical learning
doesn’t assume a medical definition of the problem and opens us to
exploring
other ways of thinking about the experience rather than trying to deal
with the
‘it.’ Asking about the phenomena of eating and sleeping vs. calling it
depression, we change the direction and consequently the outcome of the
conversation. By sharing our own process with this shift we aren’t
telling the
other person what to do but offering our own critical learning
experience. In
this sharing we are exposing the other person to a potentially larger
story,
which may help them consider other ways of thinking about what’s
happening and
therefore options that were not previously available.
Mutuality:
Redefining help
Everything we
have learned about help in the mental health system pushes us to think
of it as
a one-way process. Even when we refer to the helper’s principle we are
only
talking about role reversal and we simply mean that now that we are in
the
helper role, we feel better just by providing help. This kind of help
continues
to maintain static roles of helper and helpee.
Further, as Friere (1995) points out it is not uncommon for
someone who
moves from helpee into helper role to build a sense of confidence and
even to
abuse power in much the same ways as was done to them. One starts to
identify
as the more ‘recovered’ person and begins to see the relationship with
his or
her peer as one of service. Unfortunately, this dynamic will never
really lead
to meaningful community integration. Mutual help in peer support (and
obviously
in community) implies both people taking on both roles with each other.
It
means sharing our vulnerabilities and our strengths and finding value
in each
other’s help. If we continue with the example above, the conversation
might
have led to
Helper: I was just on my way to the gym, would you
like to come with
me? I’ve actually had some difficulty going alone, I always feel so
overly
conscious about my body. I feel like everyone’s staring.
Helpee turned helper: Wow I used to feel that way
and it kept me from
even wanting to use the locker room. Finally I just asked myself if I
worried
about what anyone else looked like. I
realized that we all kind of think about ourselves and decided that
probably no
one really was paying attention. That thinking took practice, but now I
feel
pretty comfortable at the gym. I’d be happy to go with you if you think
it
might help.
The reciprocal
nature of this interaction helps both people see themselves in multiple
roles
throughout the conversation. It is this level of mutuality that most
resembles
community type relationships and allows us to move towards full
citizenship
rather than feeling simply integrated in the community.
It is crucial that even with paid peers we
must figure out how the relationship can be more mutual and reciprocal. Perhaps we can consider it our job to model
peer support rather than to be a
provider of service.
Language
Using language
that helps explore each individual’s subjective experience is important
in
beginning to redefine recovery. The new use of language, however,
becomes
especially difficult when we are doing peer support in a traditional
setting.
When we are working with a team of traditional providers it becomes a
much more
simple and quick communication to talk about symptoms, illness, coping
etc. As
peers we find that we are misunderstood if we use other language and in
order
to feel part of the team, we begin to talk about people in medical
terms
(sometimes even without the presence of the peer). For example: Dr. A
runs into
a peer specialist in the hall one day and asks him how Peer One is
managing his
symptoms. The Peer Specialist says: “gee Dr. A, Peer B seems really
symptomatic
today.” Aside from the fact that this conversation should not be
happening
without the presence of Peer B the symptom language has generated a set
of
assumptions that have major implications, and secondly, what are both
of their
assumptions about symptoms and what constitutes them. Unfortunately,
this
simple conversation may result in the team deciding to increase peer
B’s
medication.
Different
language supports a different conversation as we saw previously. If we
avoid
the code language of mental health we find that we are having very
different
conversations, which then require a different type of response. One
example of
this shift in language might include talking about experiences instead
of
symptoms, The language of experiences allows not only for unique
description of
that particular event, it also presumes only one person’s
interpretation. With
this starting point we can explore other ways of knowing as well as
reflecting
on how the use of medical language keeps us stuck.
As long as we
continue to adopt the language of mental health, we are stuck in power
structures that impose a narrow meaning on our words and conversations.
We then
assume a lot about our experiences as they’ve been interpreted by the
traditional system. It becomes easy to talk about “my depression,”
rather than
I’m feeling pretty down and out today. This leaves us with a
“thingness” that
is intrinsic to us, generalizable to others, and occurs because we have
“it.”
The language and constructs of mental illness begin to limit our much
more
subjective experience. If we can struggle with the language of the
phenomenal,
play with metaphor, take the time to really explain to each other, we
begin a
conversation that is rich with possibility rather than limited by what
we know
about the illness.
Mutual
responsibility
We have talked
about the need for mutuality in the peer support relationship but what
do we
mean by mutuality?
- It
is assumed that both people learn from each other
- Both
people figure out the rules of the relationship
- Power
structures are always on the table and negotiated
In traditional
helping relationships, it is assumed that it is primarily up to the
helper to
take responsibility for making the relationship work. When things are
not
working so well this kind of dynamic has led helpers to feel like
they’re
‘doing something wrong,’ or to blame the
other person for not trying. We stop saying what we see, what we need
and we
begin to disconnect, falling into an assessment and evaluation role
rather than
working on it together. On the other hand, as patients we have been
implicitly
taught that we cannot or don’t have to take responsibility in a helping
relationship. We fall into believing that we are victim to our own
reactions
and then wonder why people disconnect or take over when we say things
like “I’m
suicidal.”
In peer support
relationships it is important to remember that it is not our task to
assess or
evaluate each other but rather to say what we see (our perspective),
what we
feel, and what we need to build connection. For example,
Peer 1 : I can’t go with you today, I’m really
suicidal
Peer 2: When you talk in the language of suicide
I feel kind of
scared and a little bit frustrated. If you’re feeling lousy and don’t
want to
go out with me, I need for us to figure out a way to talk about it
differently.
In this scenario
rather than starting a suicide risk assessment, we are once again
exploring the
use of language without presuming it means imminent action. We bring
the
relationship back to negotiating what will work for both of us and we
remember
that both our needs are important.
Redefining
safety: Sharing Risk
We cannot talk
about doing something fundamentally different until we address the
topic of
safety and the fact that it’s simply come to mean risk assessment in
the field
of mental health. We’ve been asked, “Are you safe, will you be safe,
will you
sign a safety contract? As recipients this has left many of us feeling
quite
fragile, out of control, and has left us thinking of safety as simply
soothing
someone else’s discomfort. If we don’t begin to address issues of risk
and
power, we cannot help but replicate many of these dynamics in peer
support.
For most people
a sense of safety happens in the context of mutually responsible,
trusting
relationships. It happens when we don’t judge or make assumptions about
each
other. It happens when someone trusts/believes in us (even when they’re
uncomfortable), and it happens when we are honest with each other and
own our
own discomfort. It is with this interpretation of safety that we can
begin to
take risks and practice alternative ways of responding. We can choose
who to be
with, when we can be there, and we can begin to talk about shared risk.
Sharing
risk in peer support tackles the issue of power, what it’s like to lose
it,
abuse it, or balance it. We talk about how we each are likely to react
when we
feel untrusting or disconnected. We begin to pave the way for
negotiating the
relationship during potentially difficult situations. This level of
honesty
works well in trusting relationships but is critical to the health of a
peer
support group or program.
Staying on
track
When we think
about how to stay on track, how to not drift back to old ways of doing
and
being, one helpful process can be to formulate standards specific to
peer
support. The standards would represent statements about the alternative
worldview that peer support tries to create - the ideal, or ‘what ought
to be’
in the helping relationships. While we have addressed some of the
current
efforts in exploring ‘critical ingredients’ earlier in this paper, here
we
would like to offer further thinking about developing standards
specific to
peer support.
First, the kind
of knowledge peers bring into the support relationship can be best
characterized as practical knowledge, or a lived knowledge from which
learning
and understanding are embedded in contextualized lived experiences
(Schwandt,
2002). When persons operate from this kind of lived knowledge,
sometimes what
is known is not necessarily evident, but rather is expressed through
common
values and stories that have been formulated through participation in a
shared
historical community – in this case that of being persons who have
received
mental health services.
So when peer
support communities explore how they are different and what they know,
the
sophistication of the knowledge they posses is often not easily brought
to the
surface. The challenge presented in developing standards for peer
support is in
finding ways to translate practical knowledge into clear accounts of
“what is
the ideal” and why this is so. This ‘realizing process’ goes beyond
soliciting information
from peers related to how they act - to digging deep to discover what
each and
all peer supporters know.
Second, peer
support knowledge is passed on through an oral culture and storied ways
of
meaning. This means that being attuned to the practical knowledge of
peer
support will require adopting a narrative framework for articulating
peer
support standards (MacNeil & Mead, 2004). It is a good method of
fit. This
can get very tricky when peer support practices are under the umbrella
of traditional
service organizations or when peer organizations are providing
traditional
services. Sometimes it can be difficult to tease out whose narratives
are
really being represented.
As one example,
an organization can be viewed as a collection of people who interact
with one
and other primarily through dialogue (Cambell, 2000). In this dialogue
they
have the opportunity to constrain or influence each other’s way of
thinking and
acting – and it is inevitable that this collection of people creates
the
organizational belief system. And within the organizational belief
system there
are more influential or dominant narratives that steer the activities
of the
organizational culture. In this regard, narratives are both structures
of power
and meaning (Bruner, 1984).
In initiating
the development of standards in peer services or support communities,
it can be
very helpful to discuss within an organization the kinds of discourse
that
guide their activities. With that, we can then reflect upon whether
these
organizational narratives more so represent the attributes of peer
support or
if (consciously or unconsciously) they reflect a drift towards more
traditional
service practices. This process of examination also can create and
reinforce a
platform for mutually responsible dialogue.
Our third
thought about standards development takes a transformative stance
(Mertens,
2005). We assume it is possible to transcend thinking and practices
that have
been shaped by the lens of dominant narratives or power structures
through the
process of developing standards for peer support. Elevating different
or
historically marginalized narratives can help us to redefine the
problem, seek
new solutions and step outside of the box in our thinking about program
standards. Likewise, creating processes of deliberation among
organizational
participants who hold different viewpoints about ‘what ought to be,’
and whose
viewpoints are situated from different positions of power, can have
positive
influences on shaping shared understandings about standards, and can
serve to
better represent traditionally disenfranchised narratives (House &
Howe,
1999; MacNeil 2002).
The possibility
also exists to broaden the scope of evidence-based practices.
Evidence-based
practices have mostly been described by
their program structures (staffing, case load size, etc.) and have
overlooked
the ingredients of the helping processes that occur within each
practice and
which research has shown to be related to how people change and grow
(Anthony,
2003). Thinking further about standards
of peer support guided by the constructs offered in this paper (Achieving Difference, Critical learning,
Mutuality: Redefining help, Language Use, Redefining safety: Sharing
risk) will help us to push our thinking around the
parameters of evidence-based practices and to frame how peer
support is
different from other services – whether professionals or peers provide
them.
Last of all, we
have given some forethought to next steps beyond developing standards,
those
involved in creating ‘measurement’ strategies that are coherent with
the values
and standards of peer support. We must remember that the history of
peer
support shows us a culture that emerged as a response to doing things
differently. Peer support programs are not intended to be routine
mental health
practices. It seems to us then, that the measurement of peer support
standards
should also look and feel very different. The fidelity of peer support
is
embedded in its storied culture and consideration should be given to
developing
narrative measurement strategies that can be acculturated into peer
practices –
the method of fit will also help to sustain the evaluative practices
overtime.
This is a future challenge for the field of evaluation and peer support
programs.
.
Peers
working in services: Can we do peer support?
There is
currently a national trend towards integrating peer services within the
traditional delivery system. Certified
peer specialists are funded through various Medicaid and VR waivers and
recipients are finding meaningful support with their paid peers.
Clearly this
role has been beneficial in acknowledging the expertise of lived
experience. It
has also offered recipients a forum to speak about their experience
differently, be exposed to strong role models, and develop new skills
and
strategies to help them heal and recover.
Peer services,
if done well, can provide hope, role modeling and simple safe
strategies for
recovery.
While the task
of the peer provider may coincide with the task of peer support, (e.g.
working
on recovery strategies, or sharing like experiences), there may also be
times
where the peer provider simply is not allowed to challenge the medical
description of the client’s experience. While empowerment and
self-advocacy are
important tools one can learn from a peer provider, it is not likely
that a
conversation may entail the “deconstruction” of the client’s
experience. One
can’t both work for the medical system and refute its very foundation.
<>
>
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With the
development of this practice of doing peer support we can begin to help
peer
providers create a platform from which to offer their unique
perspective.
Perhaps it is here, with this new influence, that other providers may
also
begin to question the over-medicalization of people’s experience.
Either way,
it is important that we don’t lose sight of true peer support in our
efforts to
‘legitimize it.’
>
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