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Hope & Fear: Consumers,
Psychiatric Medications
and the Therapeutic Relationship
Consumers for Knowledge
Exchange and Research (ConKER)
Primary author:
Ruth Gumpp, M.A.
Background
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CONKER was established to engage
psychiatric consumers as partners in the
research enterprise, to investigate questions of
interest and relevance to persons receiving
psychiatric services.
CONKER aspires to a participatory action
research model.
CONKER is currently made up of three
consumers, two practitioners and a UBC
professor.
This project
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This study explores the role psychiatric
medication plays in the lives of mental health
consumers, and, in particular, how this experience
of taking medication is affected by the relationship
with the prescribing physician. Rather than
concentrating exclusively on issues of
adherence/non-adherence to medication regimens,
as other studies have done, our goal was to unveil
the complex lived experiences of consumers, their
attitudes, beliefs, and behaviour as they pertain to
medications and the therapeutic relationship.
Methodology
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Study conducted with UBC ethics approval.
Purposive sampling and recruitment of 15
adults who had been prescribed psychiatric
medications for at least six months.
One-on-one semi-structured interviews.
Following this, two focus groups to clarify and
elaborate preliminary findings.
Transcription of tapes (about 400 pages) and
thematic analysis.
Limitations
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Only English-speakers.
Hospitalized persons excluded.
“Demand characteristics,” i.e. study held under
VCH auspices and interviews conducted at a
VCMHS team.
Sample more “middle-aged,” less “young
adult,” and the majority in treatment > 10
years.
Volunteer bias?
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Participants may have experimented with
medication at earlier points in their lives, but
none were currently non-adherent, according
to their own report. (Note by contrast that
74% of subjects in the CATIE study
discontinued medication before study
completion at 18 mos.)
Participants appeared to be resigned, for better
or worse, to being on psychiatric medication,
and no one was unequivocally anti-medication.
Results: 1) Participants
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Ten women, five men, ages ranging from mid20s to early 60s.
Eleven were either current or previous clients
of VCMHS.
Thirteen were presently taking psychiatric
medication.
Diagnoses, volunteered by the participants,
included schizophrenia, depression, bipolar,
OCD, GAD, PTSD and borderline PD.
2) Accessing care
Delays encountered:
 In accessing mental health teams;
 In GP referrals to specialists;
 In getting a diagnosis;
 Waiting for entry to outpatient programs.
“I have wasted a lot of years”
Respondents said that by the time they reached
out for support, clinicians should be aware that
this meant they really needed help, right now.
3) Continuity
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Continuity among care providers was seen as
crucial, and may even compensate for other
deficiencies in the relationship.
Problems with continuity: high staff turnover,
telling the same story over and over, starting
from square one. Starting with a new caregiver
could be seen as daunting even when the
relationship with the current physician was
experienced as dissatisfying.
4) Transitions
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Issue of being “cut loose” if you become “too well.”
Since it takes time to tell your story and build trust, a
change of doctors – either because the physician left
the program, or by moving into a new catchment area
– was seen as intimidating.
Even when consumers were unhappy with the current
physician, contemplating a change was an anxietyproducing challenge.
“I don’t want to do that [change doctors], no, I would
have to start all over again and I don’t think I’m
well enough to do that. It’s harsh to come into a new
team….”
5) Elements of the relationship
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Many participants were positive about their
physician/psychiatrist. However….
Some expressed that there was an overemphasis on medication, that other existential
problems were being ignored.
Not enough counseling/psychotherapy.
Some found the meetings too businesslike,
with “a formula of questions.”
“I was looking for more comfort,
maybe….whereas it was all business and all
medication.”
6) Too little time?
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Doctor sessions at the MH teams were usually
of short duration, 15 – 30 minutes, especially if
the client was seen as “doing well.”
Satisfaction with the visit did not necessarily
depend on the length of time spent together,
but on how the client valued the quality of the
encounter and whether needs were addressed.
“If you have questions they’ll answer
them….but they don’t really go out of their
way to see how you’re doing….trying to get at
the bottom [of things].”
7) Side-effects
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Side-effects identified as “most frustrating” aspect of
treatment, however a “necessary evil.”
“…the side effects are huge – but if I don’t take
[medication] – then I get into hearing voices,
so you know what’s the best of two evils.”
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Seven of 15 attributed weight gain to meds, some
gaining as much as 50 pounds.
“Dulling,” “flattening” effect also reported.
When reporting unusual adverse effects consumers
were not always believed.
Ambivalence about hearing the whole list of possible
side-effects.
8) Stability/Stagnation
Reports of being “stuck,” achieving some
degree of relief but not really feeling well.
 Emphasizing “stability” had a flipside as it did
not necessarily mean that the best health
outcomes had been attained.
 Physicians staying with “tried and true”
treatment.
“They’re more interested in keeping you calm,
and keeping you level, and keeping you out of
hospital….they want to stabilize you, they
don’t want to improve your situation really.”
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9) Motivations to take medication: fear,
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Participants spoke about fear as a motivating
force in staying on medication:
- Fear of losing program eligibility;
- Fear of withdrawal effects;
- Fear of recurrence and relapse;
- Fear of hospitalization and “going back to
that dark place,” “losing my furniture,”
“getting shock treatment,” “losing a lot of
your skills,” “going back to square one.”
….Hope….
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Of finding the “right” medication: “That’s the
key.”
Of being able to live without medication one
day.
Of becoming “normal” again.
Of not being “down forever.”
“I’m hoping that I’m getting recovered. It
should be like before I was sick.”
….and (finally) lack of options.
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Going “cold turkey”: “Not nice”;
“Dangerous.”
“I don’t want to make a mistake.”
“Hell if I do, hell if don’t” [take medications].
“It’s a life/death matter for me.”
“There’s no other choice for me.”
10) Non-adherence
A number of different reasons were given for
unilaterally deciding to take less/more than
prescribed:
 Rejecting the diagnosis and need for treatment;
 Concern about side effects
 Feeling good/bad
 Not wanting to become addicted
 Experimenting
 Seeking more control
“I wanted to try life without medication….I
would see how it would feel.”
11) Equal partners?
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Participants spoke about feeling involved at times in
the treatment process, being able to negotiate and
discuss pros and cons of medication, “like partners.”
This was not consistent, however, with respondents
saying they were excluded at times.
“He’s up there and I’m down here.”
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A potential flipside to greater involvement could be
that the consumer might feel that they are expected to
take responsibility for decisions for which they which
they have not been sufficiently prepared.
“It would be easier if they decided for you,
[provided that they] gave you a guarantee.”
12) Taking charge
The idea of confronting the physician with
concerns about treatment could be
overwhelming.
“It’s hard when you’re not well to be your own
advocate.”
 The majority believed that the doctor had to
take charge in times of crisis.
 Participants spoke about a need to balance
their own interests with trust in the clinician,
and being loyal as a patient.
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13) Trust
“Trust is huge. Trusting someone makes you
far more likely to listen to their suggestions
and try their ideas.”
 Trust could take time to develop.
 There was respect for the doctor’s expertise
among participants, who recognized an
asymmetry of education and knowledge.
 Trust is necessary when treatment seems like
trial and error.
Continued….
According to participants trust was enhanced:
 by taking enough time and addressing all the
issues raised;
 by the belief that the doctor was acting in your
best interest, and
 by the belief that the doctor also trusted you;
Trust was diminished :
 by not “getting better,” too many side effects,
or the doctor not seeming to tell the truth.
Some final words….
“The relationship isn’t so different than any
other type of professional relationship….you
expect someone to be forthright and to be
honest and to be sincere and to be nurturing
and to be caring.”
Policy Suggestions
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With continuity of care so important, consider ways
to minimize staff changes. For example, make the
“catchment area” rule flexible, or client-driven: if
he/she prefers to stay at the old team, support that
choice.
Re. discharge from the team, support client choice in
this area. Clients appearing “stable” or “high
functioning” may still need the support of a team.
Make the “exiting” client-driven or at least a shared
decision. Ensure follow-up is in place.
Team eligibility not be contingent on being on
medication.