Don rubin icch ppt

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

Center for Health & Risk Communication

The University of Georgia

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

Center for Health & Risk Communication

The University of Georgia

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

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

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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

Center for Health & Risk Communication

The University of Georgia

Quantitative Narrative Coding

Patient behaviors

• Agency

• Passivity

• Resistance

• Info seeking

• Info provision

• Info verification

Outcomes

• Provider TX/DX responsiveness

• Provider positive socioemotional

• Pt knows follow-up

• +/- Pt satisfaction

Unit of analysis = entire story

0=no mention; 1=brief mention; 2=elaborated mention

Center for Health & Risk Communication

The University of Georgia

Satisfaction narratives exceeded dissatisfaction narratives

26

7

0

5

10

15

20

25

30

Narrative Code Category

% satisfaction narrative

% dissatisfaction narrative

Center for Health & Risk Communication

The University of Georgia

Info provision and info seeking common in narratives; info verification rare

28

30

4

0

5

10

15

20

25

30

35

Narrative Code Category

% info provision

% info seeking

% info verification

Center for Health & Risk Communication

The University of Georgia

Narratives reporting next steps common; resistance to provider’s plan rare

55

15

5

0

10

20

30

40

50

60

Narrative Code Category

% knows follow-up

% agency

% resistance

Center for Health & Risk Communication

The University of Georgia

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)

Qualitative Narrative Analysis

1. Frank, Su, & Knott, 2003 2. Aujoulat, Luminet, & Deccache, 2007 3. Shapiro, Prislin, Shapiro, & Lie, 2000; Young &

Rodriguez, 2006

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The University of Georgia

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)

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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

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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

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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

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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

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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

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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).

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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

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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

Supported by National Institute on Aging, grant

1R01AG034073-01, Vicki Freimuth, PI. Opinions

expressed are solely those of the authors