Older Adults Narratives AboutParticipation in Medical EncountersDon Rubin, Vicki Freimuth, John Parmer,Mumbi Okundaye, Ter...
Windows onto the Medical      Encounter1. Observation—e.g., RIAS2. Questionnaire—e.g., CAHPS,  Service Satisfaction Scale ...
Research on Patient       Narratives• Narrative medicine (Charon, 2001)• Patient history-giving (Smith, 1996)• Story-telli...
Patient Narratives of     Clinical Encounters• Accounts of patient-provider  communication deliberately elicited (e.g., Mc...
Interactive Health Literacy is theprocess by which patient/consumers,providers, and other members ofsocial and service net...
Why is Interactive Health     Literacy so Important?• Participation in medical encounters   – Higher satisfaction   – High...
Health Literacy on Wheels    Print                                   Months 7-9   Materials #1       PATI                 ...
Eliciting the narrativeFirst, I’d like you to tell me what all  happened when you saw your doctor last  week. You can tell...
Sample• Community-dwelling recipients of Meals onWheels or congregate dining services• N=104 for quantitative description•...
Objectives for Patient/Consumertraining in interactive health literacyHealth literate patients-•Have agency   –Can articul...
Quantitative Narrative Coding Unit of analysis = entire story 0=no mention; 1=brief mention; 2=elaborated mentionPatient b...
30     26252015                                        % satisfaction                                        narrative10  ...
35            30  30       28  25  20                                          % info provision  15                       ...
60     55504030                                         % knows follow-up20                                       % agency...
Qualitative Narrative               Analysis The following themes were identified: I. Salience of provider personal traits...
Significance of narrated   characteristics of provider                  (Theme I)When patient recounts provider‘s positive...
Provider character equated with           expertise• ―The physician‘s assistant I saw, I felt I needed to be  seen by some...
Satisfaction with provider based on           personal traits• ―This is the same place I had been going for  like 15 years...
Unequal Power in Medical      Encounters (Theme II)   pt agency    pt resistance                      pt passivity  Pt nar...
Unequal power distribution    translates to less agency• ―How important it is, he said it‘s very  important for me to do w...
Unequal power expressed      through disempowerment• ―I had questions about my gall stone and um,  asked him why did he ha...
Control over illness (Theme III) Narrated locus of control for disease condition  Attributed responsibility for next steps...
Locus of control over illness  defines responsibility for next              steps1 External locus of control: • ―I can‘t g...
Fear sometimes motivatesinternal control/resistance―Im scared to have it didagain…because the first two timedidn‘t do no g...
Fear sometimes motivates   internal locus/agency• ―Id had an episode of very, definitely, a  shortness of breath that scar...
Conclusions - 1• When given an open prompt to recount  a health encounter, older adults spend  most of their time construc...
Conclusions - 2• Of patient behaviors that are recounted  in patient narratives, information  provision and information se...
Conclusions - 3Patient stories suggest that next-step are very salient outcomes from medical encounters - But no way of ve...
Conclusions - 4Patient narratives of medical encounters are fraught with socio- emotional meaning Providers‘ personal cha...
Future Research• What are characteristics of providers who  engender pt narratives of one kind or  another?• How do observ...
For more information… Health Literacy on Wheels http://chrc.uga.edu/research/healthliteracy.htmlSupported by National Inst...
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Don rubin icch ppt

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Don rubin icch ppt

  1. 1. Older Adults Narratives AboutParticipation in Medical EncountersDon 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. 2. Windows onto the Medical Encounter1. Observation—e.g., RIAS2. Questionnaire—e.g., CAHPS, Service Satisfaction Scale for Cancer Care3. Patient narratives- focus on the patients‘ ―naïve‖ construction The University of Georgia Center for Health & Risk Communication
  3. 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 The University of Georgia Center for Health & Risk Communication
  4. 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. 5. Interactive Health Literacy is theprocess by which patient/consumers,providers, and other members ofsocial and service networks mutuallyexchange and appraise healthinformation.• Focus is primarily on oral communication (orother interactive media).• Patient/Consumer participativeness indexesinteractive health literacy.•The outcome of interactive health literacy ispatient/consumer decision-making. The University of Georgia Center for Health & Risk Communication
  6. 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. 7. Health Literacy on Wheels Print Months 7-9 Materials #1 PATI Coaching Video 1 Coaching Coaching Coaching about next Video 2 medical visitMonths 1-3 Months 4-6 Months 7-9 Months 10-12 The University of Georgia Center for Health & Risk Communication
  8. 8. Eliciting the narrativeFirst, 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. 9. Sample• Community-dwelling recipients of Meals onWheels 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 The University of Georgia Center for Health & Risk Communication
  10. 10. Objectives for Patient/Consumertraining in interactive health literacyHealth 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 The University of Georgia teach-back) Center for Health & Risk Communication •Ask key questions
  11. 11. Quantitative Narrative Coding Unit of analysis = entire story 0=no mention; 1=brief mention; 2=elaborated mentionPatient behaviors Outcomes• Agency • Provider TX/DX• Passivity responsiveness• Resistance • Provider positive• Info seeking socioemotional• Info provision • Pt knows follow-up• Info verification • +/- Pt satisfaction The University of Georgia Center for Health & Risk Communication
  12. 12. 30 26252015 % satisfaction narrative10 7 % dissatisfaction narrative 50 Narrative Code CategorySatisfaction narrativesexceeded dissatisfactionnarratives The University of Georgia Center for Health & Risk Communication
  13. 13. 35 30 30 28 25 20 % info provision 15 % info seeking 10 % info verification 5 4 0 Narrative Code CategoryInfo provision and info seekingcommon in narratives; infoverification rare The University of Georgia Center for Health & Risk Communication
  14. 14. 60 55504030 % knows follow-up20 % agency 15 % resistance10 50 Narrative Code CategoryNarratives reporting next stepscommon; resistance toprovider’s plan rare The University of Georgia Center for Health & Risk Communication
  15. 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, 20032. Aujoulat, Luminet, & Deccache, 20073. Shapiro, Prislin, Shapiro, & Lie, 2000; Young & Rodriguez, 2006 The University of Georgia Center for Health & Risk Communication
  16. 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 The University of Georgia Center for Health & Risk Communication
  17. 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. 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. 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 The University of Georgia Center for Health & Risk Communication
  20. 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) The University of Georgia Center for Health & Risk Communication
  21. 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. 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 The University of Georgia Center for Health & Risk Communication
  23. 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 Georgia1. Young, A. J. & Rodriguez, K. L.(2006). Center for Health & Risk Communication
  24. 24. Fear sometimes motivatesinternal control/resistance―Im scared to have it didagain…because the first two timedidn‘t do no good…but Im not goin‘to let them operate anymore. Im 82years old and I dont think I need tobe having too much done to mybones, and legs, and things.‖ The University of Georgia Center for Health & Risk Communication
  25. 25. Fear sometimes motivates internal locus/agency• ―Id 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 dont 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. 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. 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. 28. Conclusions - 3Patient stories suggest that next-step are very salient outcomes from medical encounters - But no way of verifying accuracy of these accounts, nor compliance The University of Georgia Center for Health & Risk Communication
  29. 29. Conclusions - 4Patient 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. 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. 31. For more information… Health Literacy on Wheels http://chrc.uga.edu/research/healthliteracy.htmlSupported by National Institute on Aging, grant1R01AG034073-01, Vicki Freimuth, PI. Opinions The University of Georgiaexpressed are solely those of the authors Center for Health & Risk Communication

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