Anca qual methods using drawings to understand lived experience of illness

Anca Elena Toma Presents:

Using

D RAWING

To understand
individual lived experience

with HIV/AIDS
, perception of
anti-viral medication

and
Doctor-patient relationships

Research Posture
Open-Mindedness and Curiosity
à Qualitative Methods

Building Networks and Utilization
à Collaborative Methods

Values and Power

à Critiquing Methods

ART
MEDICINE

Participant-Generated
DRAWINGS to Illness
Disease
Drawing
understand lived
experience of illness
HIV/AIDS

Drawing
+
STORY to generate
discussion about Vaginal
Narrative
Microbicide
medication

MEDICATION

Primary Compliance
Care
Physicians

Female
DOCTOR PATIENT Sex Trade
RELATIONSHIPS
Workers

Rarely used research method yet powerful method of
conveying, discussing and understanding our world.

HIV/AIDS
One of the most prevalent, highly discussed and
controversial sexually transmitted infections of our time.
Drawing
Vaginal
Microbicide
Need of female-controlled HIV prevention methods. Clinical
trials promising though patient voices seldom heard

Often patient’s ﬁrst and only connection to medical care;
relationship may be imperative to forming patient
Primary
Care
perception of illness; doctors have been an historical
Physicians
instrument of disease construction; medicalization of

female sexuality

Highly stigmatized in past and in present day, population
was often usedFemale
as source of ‘free’ medical knowledge about
Sex Trade
sexually transmitted infection yet rarely given a voice.
Workers

ART
MEDICINE

DRAWINGS to Illness
Drawing
understand lived
HIV/AIDS

Embodying heart disease
through drawings
•  Marilys Guillemin – University of Melbourne

•  Interviewed 49-54 yr old women with heart disease

•  Participants were asked to draw how they understood
heart disease, using colored pencils

•  Paper focused on drawing analysis

•  Drawings are visual products of women’s knowledge
about heart disease and a process of embodied
knowledge production

ings
Dr aw Product & Process
•  “The drawings are depictions of how women
understand heart disease; however, only
thinking of the drawings as depictions
removes any sense of the process and the work
of drawing.”

•  “Drawing is both a noun and a verb; both a
product and process.”

•  “…the drawing is a historical record of the
interactions, processes and experiences of
their heart disease.”
Guillemin 2004

the blood flowing through (see Figure 1).

I’m going to do a
haven’t damaged it
damaged it, but the
flow into my heart,
Wendy suffered f
when investigated
90 per cent blocka
vessels. She drew
blood flowing thro
(see Figure 2), wh
Figure 1 Susan’s ‘common Just worms, yes, wo
little heart’.
of, just little worm
Guillemin 2004
heart . . . like little
bodies that if one o
find another or try and create another river

heart . . . like little rivers of blood going through our
bodies that if one of them blocks up, somehow they
reate another river

heart, that’s the
, the strongest part.

regular heartbeat
ttempts to surgi-
m resulted in long-
at emphasized the
er drawing of her
wing: Figure 2 Wendy’s drawing
showed her damaged blood
se it’s the strongest vessels drawn in black feeding
ongest thing in your blood into her red heart.
an have limbs taken,
, breasts, bowel, but
Guillemin 2004
eart; no second chance. Black was just strength. That’s
at’s the favourite part of my body, the strongest part.

as a record of her personal emotional history – her anger at
d up in cotton wool’ as a child, and now her ability to deal
mage (see

what I’ll
my heart
K, that’s
coming in.
it comes
hat’s the
alve and
than the
therefore
s through, Figure 4 Stella’s two hearts depicted, on the left, her past
ough but childhood damage from rheumatic fever and, on the right,
ming back her current healing heart.
at valve is
close to
regurgitation. OK, this side it should be 2004
down, down and
Guillemin simple

igure 7).
nd figuratively drawn
e drawings are more
breath after climbing
r standing on end.
e difficulties of living
ficulties of pain and
he visibility of these
nt, the frustration at
images are figurative
to health promotion
of contestations Helen drew herself with her hair standing up on end.

Figure 7
with
y point here is that to Figure at first glance have any obvious

Although this drawing may not 7 Helen
connection with heart disease, it very powerfully embodied Helen’s

es of heart disease wefrustration ofherself
feeling of intense drew being misdiagnosed when she was

d historicalinmeanings attack.

her hair
fact having a heart with
standing up on
Guillemin 2004
ess of drawing these
end. Although

atal depression: ‘no light, it’s an

A participant’s drawing of post-natal depression.

“I’m in a box, and I’m alone.”

enerated visual
wings. Much of the work
ogy has been limited to
An example is research Guillemin & Dawn 2010
ntations of themselves
98; Driessnack 2006;

Mission Statement

Using
Drawings

to understand

individual perception of, lived experience with
and diagnosis and treatment of
HIV/AIDS

With the hopes of someday discovering

how
Doctor-patient relationships
shape the attitudes,

thoughts, and feelings about
anti-viral medication

such as the HIV vaginal microbicide.

ART
MEDICINE

DRAWINGS to Illness
Drawing
understand lived
HIV/AIDS

Draw ing
Primary
Care Female
Physicians
Sex Trade

Workers

Individual Interviews
(ladies in the trade)

Discussion about experience (living) with HIV/
AIDS.

Sample Interview Questions:
“Tell
me
a
bit
about
your
experience
with
HIV/AIDS.”

“What
was
it
like
when
you
were
ﬁrst
diagnosed?”

“Do
you
feel
your
life
has
changed
since
the
diagnosis?”

“What
does
being
HIV-‐posiGve
mean
to
you?”

(primary care physicians)

Discussion about experience diagnosing and
treating patients with HIV/AIDS.

Sample Interview Questions:
“Tell
me
a
bit
about
your
medical
or
paGent
experience

with
HIV/AIDS.”

“What
was
it
like
when
you
diagnosed
someone
for
the

ﬁrst
Gme?”

“What
do
you
think
life
is
like
for
a
paGent
living
with

HIV/AIDS?”

(all participants)
•  Participant asked to draw their own
understanding of HIV infection and/or AIDS
–  “Ask participant to describe not just content, but also
reasons for their choice of colour, spatial organization and
composition of the drawing”
(Guillemin 2004)
•  Audiotape interview and discussion about
drawing
•  Images later analyzed together with
the participant’s descriptions

Data To Be Collected

Recorded Interviews
+
Drawings
+
Case Notes
+
Recordings of Visits

“Giving participants time to reﬂect was

important here; as was the researcher
remaining silent, or offering
encouragement. This serves to give
participants time and space to reﬂect…”
(Guillemin & Drew 2010)

Data Analysis

Narrative Analysis
+
Drawings interpreted together with
participant’s reﬂection of drawing
+
Narrative Analysis?
+
Conversational Analysis
“In the context of visual research … the

meaning of the images resides most

signiﬁcantly in the ways that participants
interpret those images, rather than as some
inherent property of the images
themselves.”

Ethical considerations

•  Participant conﬁdentiality
–  Case notes(doctor), drawings produced
•  Ownership of drawings
–  Permission to display or include in publications
•  chance of participant re-living traumatic
experience
–  Using photo-elicitation with youth & chronic illness:
“Contemplating and carrying out the photo-generation task
provided individuals with legitimized time and space to
seriously consider what it meant for them to be a young
person living with a chronic condition.
“None of the participants reported negative emotional
consequences of being asked to consider such a sensitive
issue” (Guillemin & Drew 2010)

Ethical considerations

•  Risks during process of drawing itself
–  “some participants were concerned about not
being sufﬁciently proﬁcient in producing images
that would portray what they wanted to convey”
–  Role of researcher to support & encourage
without being directive
–  Importance of discussing risks with participants
beforehand
•  Evidence of illegal activity from drawing
–  Is it researcher’s responsibility to notify legal
authorities in the case of serious violence, harm
to self or harm to others?
–  Notify participant of risks of disclosure

Implications

•  Has been called an ‘enabling and empowering’
methodology (Guillemin & Drew 2010)
•  “when the experiences we are investigating in
our research are difﬁcult and confronting, words
are sometimes unavailable for participants to
express the raw emotions and feelings
experienced. Visual methodologies provides an
avenue of to access these experiences and
understandings”
•  “…to explore beyond the dominant biomedical
paradigm”

“The way that people understand illness is a
messy assemblage of biomedical knowledge,
cultural metaphors and past and current lived
illness experience.” (Guillemin 2004)

“Clinical practice is characterized by complex
meanings, interactions and negotiations. The
drawings … offer a way of making sense of these
intertwined inﬂuences. … allows a means of
understanding the varied ways that different
people understand their illness conditions.

“This methodology is a powerful adjunct to word-
based accounts and offers a way of
understanding the various ways that illness is
embodied.”(Guillemin & Drew 2010)

al

to
This
to be

was

raphs,

cular,
nd of Thank you
ten
pants.
n task
space
young
e
n any
d that
rtant
ported

not all
A Participant’s drawing of menopause,
e or depicting a tree.
case

rience FIGURE 3. A participant’s drawing of menopause, depicting a tree.
eir

Anca qual methods using drawings to understand lived experience of illness

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