Center for Health & Risk Communication The University of Georgia 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
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• Contingent—unfolding chronicle of disease, symptomology, treatment
• Moral—culpability, coping, merit
• Core—genre and archetype
Center for Health & Risk Communication
The University of Georgia
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
Center for Health & Risk Communication
The University of Georgia
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.
Center for Health & Risk Communication
The University of Georgia
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
Center for Health & Risk Communication
The University of Georgia
Print Materials
Video 1
Coaching about next
medical visit
Video 2
Health Literacy on Wheels
Months 7-9
Months 1-3 Months 4-6 Months 7-9 Months 10-12
Coaching
Coaching
Coaching
PATI #1
Center for Health & Risk Communication
The University of Georgia
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.
Center for Health & Risk Communication
The University of Georgia
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
Center for Health & Risk Communication
The University of Georgia
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 teach-back) •Ask key questions
Objectives for Patient/Consumer training in interactive health literacy
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
Significance of narrated characteristics of provider
(Theme I)
Center for Health & Risk Communication
The University of Georgia
• ―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.‖
Provider character equated with expertise
Center for Health & Risk Communication
The University of Georgia
• ―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.‖
Satisfaction with provider based on personal traits
Center for Health & Risk Communication
The University of Georgia
Patients often narrate unequal power by telling about when their voices were silenced by the physician
Unequal Power in Medical Encounters (Theme II)
pt agency pt resistance pt passivity
Pt narrates unequal power distribution in
encounter
Center for Health & Risk Communication
The University of Georgia
• ―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)
Unequal power distribution translates to less agency
Center for Health & Risk Communication
The University of Georgia
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.‖
Center for Health & Risk Communication
The University of Georgia
Loss-of control-narratives often associate
agency with fear motives
Control over illness (Theme III)
Narrated locus of control for disease
condition
Attributed responsibility for next steps in
TX/DX
Center for Health & Risk Communication
The University of Georgia
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.‖
Locus of control over illness defines responsibility for next
steps1
1. Young, A. J. & Rodriguez, K. L. (2006).
Center for Health & Risk Communication
The University of Georgia
―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.‖
Fear sometimes motivates internal control/resistance
Center for Health & Risk Communication
The University of Georgia
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."
Center for Health & Risk Communication
The University of Georgia
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
Center for Health & Risk Communication
The University of Georgia
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)
Center for Health & Risk Communication
The University of Georgia
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
Center for Health & Risk Communication
The University of Georgia
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
Center for Health & Risk Communication
The University of Georgia
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?
Center for Health & Risk Communication
The University of Georgia
For more information…
Health Literacy on Wheels http://chrc.uga.edu/research/healthliteracy.html