1. Older Adults' Narratives About
Participation in Medical Encounters
Don Rubin, Vicki Freimuth, John Parmer,
Mumbi Okundaye, Terry Kaley, Sarah Comer
–The University of Georgia, Athens, GA, USA
International Conference
on Communication in
Healthcare, Chicago 2011
The University of Georgia
Center for Health & Risk Communication

2. Windows onto the Medical
Encounter
1. Observation—e.g., RIAS
2. Questionnaire—e.g., CAHPS,
Service Satisfaction Scale for Cancer
Care
3. Patient narratives- focus on
the patients‘ ―naïve‖ construction
The University of Georgia
Center for Health & Risk Communication

3. Research on Patient
Narratives
• Narrative medicine (Charon, 2001)
• Patient history-giving (Smith, 1996)
• Story-telling as therapy (J. Pennebaker)
• Illness Narratives (Bury, 2001)
• Contingent—unfolding chronicle of
disease, symptomology, treatment
• Moral—culpability, coping, merit
• Core—genre and archetype
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Center for Health & Risk Communication

4. Patient Narratives of
Clinical Encounters
• Accounts of patient-provider
communication deliberately elicited
(e.g., McCabe, 2004; Walker, 2001)
• Unstructured accounts of clinical
encounters in which detail about
patient-provider communication
spontaneously emerges
– Spontaneous mentions signal salience
The University of Georgia
Center for Health & Risk Communication

5. Interactive Health Literacy is the
process by which patient/consumers,
providers, and other members of
social and service networks mutually
exchange and appraise health
information.
• Focus is primarily on oral communication (or
other interactive media).
• Patient/Consumer participativeness indexes
interactive health literacy.
•The outcome of interactive health literacy is
patient/consumer decision-making.
The University of Georgia
Center for Health & Risk Communication

6. Why is Interactive Health
Literacy so Important?
• Participation in medical encounters
– Higher satisfaction
– Higher compliance
– Better health outcomes
• Disease management
• Reducing health disparities
• Patient/Hospital safety
The University of Georgia
Center for Health & Risk Communication

7. Health Literacy on Wheels
Print Months 7-9
Materials #1
PATI
Coaching
Video 1
Coaching Coaching
Coaching
about next Video 2
medical visit
Months 1-3 Months 4-6 Months 7-9 Months 10-12
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Center for Health & Risk Communication

8. Eliciting the narrative
First, I’d like you to tell me what all
happened when you saw your doctor last
week. You can tell it like a story with a
beginning, a middle and an end. Maybe
you want to start the story of your visit to
the doctor with the phone call you made to
set up the appointment. Or maybe start
your story with what happened when you
spoke to the receptionist at the front desk.
Go ahead and tell the story.
The University of Georgia
Center for Health & Risk Communication

9. Sample
• Community-dwelling recipients of Meals on
Wheels or congregate dining services
• N=104 for quantitative description
• N=25 for qualitative analysis
•Mean age = 74.58 (s.d.=9.3) ;
•85% female
•72% African American
•42% rural
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Center for Health & Risk Communication

10. Objectives for Patient/Consumer
training in interactive health literacy
Health literate patients-
•Have agency
–Can articulate own health goals
–Persistent in pursuing those goals
•Prepare ahead for challenging situation
–Emotionally charged
–Extreme time pressure
–Power and knowledge differential
•Are verbally resourceful
•Know scripts for interacting (e.g., to request
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teach-back) Center for Health & Risk Communication
•Ask key questions

11. Quantitative Narrative Coding
Unit of analysis = entire story
0=no mention; 1=brief mention; 2=elaborated mention
Patient behaviors Outcomes
• Agency • Provider TX/DX
• Passivity responsiveness
• Resistance • Provider positive
• Info seeking socioemotional
• Info provision • Pt knows follow-up
• Info verification • +/- Pt satisfaction
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Center for Health & Risk Communication

12. 30
26
25
20
15
% satisfaction
narrative
10
7
% dissatisfaction
narrative
5
0
Narrative Code Category
Satisfaction narratives
exceeded dissatisfaction
narratives The University of Georgia
Center for Health & Risk Communication

13. 35
30
30
28
25
20
% info provision
15
% info seeking
10
% info verification
5 4
0 Narrative Code Category
Info provision and info seeking
common in narratives; info
verification rare The University of Georgia
Center for Health & Risk Communication

14. 60
55
50
40
30
% knows follow-up
20 % agency
15
% resistance
10
5
0
Narrative Code Category
Narratives reporting next steps
common; resistance to
provider’s plan rare
The University of Georgia
Center for Health & Risk Communication

15. Qualitative Narrative
Analysis
The following themes were identified:
I. Salience of provider personal traits1
II. Perception of power within the
appointment2
III. Perceptions of control regarding illness3
– Locus of control (internal vs. external)
1. Frank, Su, & Knott, 2003
2. Aujoulat, Luminet, & Deccache, 2007
3. Shapiro, Prislin, Shapiro, & Lie, 2000; Young &
Rodriguez, 2006 The University of Georgia
Center for Health & Risk Communication

16. Significance of narrated
characteristics of provider
(Theme I)
When patient recounts provider‘s positive
traits….
…narrative expresses satisfaction with the
encounter
 Provider‘s personality trait is often
recounted as functionally equivalent to
expertise/medical ability
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Center for Health & Risk Communication

17. Provider character equated with
expertise
• ―The physician‘s assistant I saw, I felt I needed to be
seen by someone in the pulmonary field soon where
I could only get in in August and this is June so I
didn‘t accept seeing the actual MD, I saw the PA,
let‘s straighten out who I saw, who was an
absolute charming lady, who was so
knowledgeable, extremely knowledgeable,
explained everything, she diagnosed me as my
problem being asthma…So I was just so satisfied, I
went out of there on cloud 9…She explained
everything, [I was] quite satisfied, whatever the best
is.‖ The University of Georgia
Center for Health & Risk Communication

18. Satisfaction with provider based on
personal traits
• ―This is the same place I had been going for
like 15 years and I found out my doctor, my
regular doctor was not in that office anymore
and I had been transferred over to a new
doctor which sort of upset me a little bit
because I had a good working relationship
with my first doctor…and for a new doctor I
found him to be really nice, I think I can
handle him.‖
The University of Georgia
Center for Health & Risk Communication

19. Unequal Power in Medical
Encounters (Theme II)
pt agency pt resistance pt passivity
Pt narrates unequal power distribution in
encounter
Patients often narrate unequal power by
telling about when their voices were
silenced by the physician
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Center for Health & Risk Communication

20. Unequal power distribution
translates to less agency
• ―How important it is, he said it‘s very
important for me to do what the doctor
said [to] do…then he dismissed me and
gave me an appointment…I was somewhat
satisfied‖
(enabling passivity/less resistance)
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Center for Health & Risk Communication

21. Unequal power expressed
through disempowerment
• ―I had questions about my gall stone and um,
asked him why did he have to take the whole
gall bladder and not just remove the stone. He
said it would be best to remove the whole gall
bladder and that I wouldn‘t have any problems
but I don‘t, I didn‘t agree with that, but that‘s it.
That‘s as far as they go. He still couldn‘t give me
a direct answer on why the whole gall bladder
instead of just doing something so we left it
there…So I said ok, and we left it just like that.‖
The University of Georgia
Center for Health & Risk Communication

22. Control over illness (Theme III)
Narrated locus of control for disease
condition
Attributed responsibility for next steps in
TX/DX
 Loss-of control-narratives often associate
agency with fear motives
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Center for Health & Risk Communication

23. Locus of control over illness
defines responsibility for next
steps1
External locus of control:
• ―I can‘t get rid of this weight it don‘t
look like, it stays about the same…‖
Internal locus of control:
• ―When I make up my mind I want to have
the surgery, just call him-other than that,
there is nothing he can do.‖
The University of Georgia
1. Young, A. J. & Rodriguez, K. L.
(2006). Center for Health & Risk Communication

24. Fear sometimes motivates
internal control/resistance
―I'm scared to have it did
again…because the first two time
didn‘t do no good…but I'm not goin‘
to let them operate anymore. I'm 82
years old and I don't think I need to
be having too much done to my
bones, and legs, and things.‖
The University of Georgia
Center for Health & Risk Communication

25. Fear sometimes motivates
internal locus/agency
• ―I'd had an episode of very, definitely, a
shortness of breath that scared the
‗waddens‘ out of me…it scared me so I
made an appointment real quickly. [The
doctor told me] if you don't do certain
things about asthma, it can get worse all
the time…I could hardly speak I had no
voice of my own anymore [due to the
asthma] and I said I objected to that."
The University of Georgia
Center for Health & Risk Communication

26. Conclusions - 1
• When given an open prompt to recount
a health encounter, older adults spend
most of their time constructing a
contingent illness narrative.
– Accounts of patients‘ own interaction
behaviors appear to be of relatively low
salience
The University of Georgia
Center for Health & Risk Communication

27. Conclusions - 2
• Of patient behaviors that are recounted
in patient narratives, information
provision and information seeking are
most salient
– Fewer references to pt behaviors relating
to agenda-setting (e.g., agency,
resistance, or passivity)
The University of Georgia
Center for Health & Risk Communication

28. Conclusions - 3
Patient stories suggest that next-step
are very salient outcomes from
medical encounters
- But no way of verifying accuracy of these
accounts, nor compliance
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Center for Health & Risk Communication

29. Conclusions - 4
Patient narratives of medical
encounters are fraught with socio-
emotional meaning
 Providers‘ personal characteristics salient
 Powerlessness often felt acutely
 Accounts of personal control (or lack) and
responsibility intertwined with fear and
agency
The University of Georgia
Center for Health & Risk Communication

30. Future Research
• What are characteristics of providers who
engender pt narratives of one kind or
another?
• How do observations of encounters
compare with pt narratives?
• How do patient narratives
change as a result of training in
interactive health literacy?
The University of Georgia
Center for Health & Risk Communication

31. For more information…
Health Literacy on Wheels
http://chrc.uga.edu/research/healthliteracy.html
Supported by National Institute on Aging, grant
1R01AG034073-01, Vicki Freimuth, PI. Opinions
The University of Georgia
expressed are solely those of the authors
Center for Health & Risk Communication