is patient centered medication adherence an oxymoron? self-management of medications in the lived...
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Is Patient Centered Medication Adherence an Oxymoron? Self-Management of
Medications in the Lived Experience of Chronic Illness
Bruce L. Lambert, Ph.D.Professor
Department of Pharmacy AdministrationUniversity of Illinois at Chicago
lambertb@uic.edu
This project was supported in part by grant 1U19HS021093-01 from AHRQ. The content is solely the responsibility of the authors and does not necessarily represent the official views of the AHRQ.
September 10, 2012 AHRQ Annual Meeting 1
Overview• What is Patient-Centered?• The Trajectory Model of Chronic Illness• Body-Biography-Conceptions of Self• The Meaning of Medication• Keeping the Balance and Monitoring the Self
System
September 10, 2012 AHRQ Annual Meeting 2
AHRQ Annual Meeting
“Adherence” is often abysmal.
September 10, 2012 3
We’re not really sure why.
(in spite of > 74K articles in PubMed)
September 10, 2012 AHRQ Annual Meeting 4
It makes us (health professionals) look bad and feel foolish
and ineffective.September 10, 2012 AHRQ Annual Meeting 5
We think patients would be much
better off if they’d do as they’re told.
September 10, 2012 AHRQ Annual Meeting 6
Maybe being “patient-centered” will help? But what
does that mean?September 10, 2012 AHRQ Annual Meeting 7
NOT“patient-in-the-center”
us looking at them.
September 10, 2012 AHRQ Annual Meeting 8
September 10, 2012 AHRQ Annual Meeting 9
September 10, 2012 AHRQ Annual Meeting 10
Through the patient’s own eyes. In their
own words.
September 10, 2012 AHRQ Annual Meeting 11
September 10, 2012 AHRQ Annual Meeting 12
EthnographyGrounded Theory
QualitativeInterview-BasedAutobiographical
September 10, 2012 AHRQ Annual Meeting 13
The Trajectory ModelSeptember 10, 2012 AHRQ Annual Meeting 14
September 10, 2012 AHRQ Annual Meeting 15
Lynn J, Adamson DM. Living well at the end of life. Adapting health care to serious chronic illness in old age. Washington: Rand Health, 2003.
September 10, 2012 AHRQ Annual Meeting 16
Lynn J, Adamson DM. Living well at the end of life. Adapting health care to serious chronic illness in old age. Washington: Rand Health, 2003.
September 10, 2012 AHRQ Annual Meeting 17
Lynn J, Adamson DM. Living well at the end of life. Adapting health care to serious chronic illness in old age. Washington: Rand Health, 2003.
Defining Characteristics of Chronic Illness (Corbin & Strauss)
1. Home2. Quality of life3. Lifelong Work4. Phases5. Variability of work by
phase6. Illness, household and
biographical work7. Arrangements8. Variability of
arrangements
9. Continuous rearrangement
10. Work of health professionals only part of overall work
11. Articulation of lay and professional work
12. Concept of trajectory
September 10, 2012 AHRQ Annual Meeting 18
Illness WorkHousehold Work
Biographical Work
September 10, 2012 AHRQ Annual Meeting 19
The BBC Chain
September 10, 2012 AHRQ Annual Meeting 20
Body
Biography Conceptions of Self
Health =Stable Alignment of Body, Biography and
IdentitySeptember 10, 2012 AHRQ Annual Meeting 21
Primary motivation of chronically ill person is
to restore/maintain stable alignment of
BBC Chain.September 10, 2012 AHRQ Annual Meeting 22
By any means necessary.
September 10, 2012 AHRQ Annual Meeting 23
If regimen helps achieve primary goal,
then person will follow, if not then
not.September 10, 2012 AHRQ Annual Meeting 24
Body Failuree.g., paralysis, tremors, limps, memory
loss, incontinence, fatigue, constipation, shortness of breath, impotence,
dizziness, weakness, pain, blindness, deafness, slurred speech, scars, sores,
deformities, amputations, etc.
September 10, 2012 AHRQ Annual Meeting 25
Body failures destabilize the BBC
Chain.
September 10, 2012 AHRQ Annual Meeting 26
Body Failure ->Failed Performance->
Loss of Self
September 10, 2012 AHRQ Annual Meeting 27
Regimens both cause and cure body
failures.
September 10, 2012 AHRQ Annual Meeting 28
Identity-Relevant Performances
September 10, 2012 AHRQ Annual Meeting 29
Body failure only has biographical
significance if it impedes identity-
relevant performance.September 10, 2012 AHRQ Annual Meeting 30
Loss of self is fundamental form of suffering in chronic
illness.September 10, 2012 AHRQ Annual Meeting 31
September 10, 2012 AHRQ Annual Meeting 32
www.postsecret.com
Meaning of Medication
(esp. in relation to identity and biography)
September 10, 2012 AHRQ Annual Meeting 33
To take or not to take=
To be or not to be
September 10, 2012 AHRQ Annual Meeting 34
Challenge is to build and test
interventions based on trajectory model
September 10, 2012 AHRQ Annual Meeting 35
Merge Qualitative with Quantitative
September 10, 2012 AHRQ Annual Meeting 36
Caveats:Health Literacy
AccessAcute vs. chronic
Intentional/Unintentional
September 10, 2012 AHRQ Annual Meeting 37
September 10, 2012 AHRQ Annual Meeting 38
Summary• Ethnographic, qualitative accounts, e.g., The Trajectory
Model, offer the most authentically patient-centered descriptions of the experience of chronic illness.
• Restoring/maintaining stability of BBC Chain is main motivator for chronically ill people
• Decisions about medication are decisions about identity and biography
• Hypothesis: Regimens that stabilize BBC chain, that facilitate biographical work, that produce positive identity transformations, will be adhered to. Others will not.
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