Anca qual meth using drawings to understand lived experience of illness

Anca Elena Toma Presents:

To understand individual lived experience

with HIV/AIDS , perception of anti-viral medication

and Doctor-patient relationships

Research Posture
Open-Mindedness and Curiosity  Qualitative Methods

Building Networks and Utilization  Collaborative Methods

Values and Power  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 perception of
Primary
illness; doctors have been an historical instrument of disease
Care
Physicians construction; medicalization of female sexuality

Highly stigmatized in past and in present day, population was
often used asFemale
source of „free‟ medical knowledge about
Sex Trade
sexually transmitted infection yet rarely given a voice.
Workers

ART MEDICINE

DRAWINGS to Illness
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

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

Figure 7 Helen drew herself with her hair standing up on end.
Although this drawing may not at first glance have any obvious
connection with heart disease, it very powerfully embodied Helen’s
feeling of intense frustration of being misdiagnosed when she was
in fact having a heart attack.
Guillemin 2004

A participant’s drawing of post-natal depression.
“I’m in a box, and I’m alone.”

Guillemin & Dawn 2010

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
HIV/AIDS

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-positive 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 patient experience
with HIV/AIDS.”
“What was it like when you diagnosed someone for the
first time?”
“What do you think life is like for a patient 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”

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. (Guillemin &
Drew 2010)

“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)

Thank you

A Participant‟s drawing of menopause,
depicting a tree.

Anca qual meth using drawings to understand lived experience of illness

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