Decision-making in Decision-making in a health care crisis: a health care crisis: Men under 60 diagnosed Men under 60 diagnosed
with prostate cancerwith prostate cancer
Tawna SkousenTawna Skousen
Supervisory Committee Members:Supervisory Committee Members:
Lynne Durrant, PhD Chair (HPE)Lynne Durrant, PhD Chair (HPE)Barbara J. Richards, PhD (HPE)Barbara J. Richards, PhD (HPE)
Susan L. Morrow, PhD (Educ Psychology)Susan L. Morrow, PhD (Educ Psychology)Teresa M. Pavia, PhD (Marketing)Teresa M. Pavia, PhD (Marketing)Saundra S. Buys, MD (Oncology)Saundra S. Buys, MD (Oncology)
OutlineOutline
Background & IntroductionBackground & Introduction Literature ReviewLiterature Review
Research QuestionsResearch Questions
How I did itHow I did it MethodsMethods
What I found outWhat I found out ResultsResults
What I thought about what I found What I thought about what I found outout
DiscussionDiscussion
Background & Introduction
Prostate cancer is an “old man’s” diseaseAnnual age-specific incidence rates, 1973-2000Annual age-specific incidence rates, 1973-2000
1
10
100
1000
10000
1973
1975
1977
1979
1981
1983
1985
1987
1989
1991
1993
1995
1997
1999
Diagnosis Year
Rate
per 1
00,0
00
50-59
60-69
70-79
40-49
80+
Literature Review
• The Big “C”– Prostate cancer
Literature Review
• The Big “D”– Decision making
• When Big “C” meets Big “D”– Decision making & prostate cancer
Research questionsResearch questionsResearch questionsResearch questions
Research question #1
• What are the decisions being made by men diagnosed with prostate cancer under age 60?
Research question #2• What are the data elements associated with
these decisions? How do they reach a treatment decision? (Are there particular steps?)– Subsumed under this question: To what extent are
health care decisions based on past experiences of decision-making? To what extent are they dependent on doctor recommendation or support systems and other feedback? To what extent are these treatment decisions based on fear of death – or fear of impotence or incontinence? Are their decisional processes the same as when making any other major decision?
Methods
Qualitative focus
• Designed to explore human aspects and life’s circumstances
• Seeks to understand what the situation/phenomenon/experience means
Grounded theory
• Is used to generate a middle-range theory that explains basic social processes• Rationale: a theory formed during data
collection will be more applicable than one developed before a study begins
• Symbolic interactionism• meaning, language, thought
Grounded theory, cont.
Data Collection Data Analysis
First Interview Preliminary Categories
Second Interview Refined Categories
Third Interview More Refined Categories
Close to SaturatedCategories
Saturation
Participants
• Recruitment• Sampling
Data collection
• Interviews• Demographic
questionnaire• Field
observation• Archival
materials• Memos
Data analysis
• Concept formation & development• Coding: open, axial, selective• Core category
• Concept modification & integration
Results
-Phone: said biopsy was “positive” for cancer – “so, come in soon, okay?”-Phone: nurse said “you have a little bit of cancer”
-“Sheer panic”. Wanted cancer out ASAP. -Not overwhelmed or shocked
-Even-tempered,
handles stuff well
-Job, family responsibilities
-”Biggest support is family”
Personality
Developmental stage
Support system
Medical communication
Emotional impact
Initial management
CRISIS
of
DIAG
NOSIS
Domain I: Health Care Domain I: Health Care OrientationOrientation
• Family experienceFamily experience
• Health care experienceHealth care experience
• Health care beliefsHealth care beliefs
Domain II: Crisis of DiagnosisDomain II: Crisis of Diagnosis
• Medical communicationMedical communication
• Emotional impactEmotional impact
• Initial managementInitial management– Support Support [wife] “From the beginning, the cancer had become ‘ours,’ not
just his. I became involved in his treatment decisions and went with him to his doctor’s visits, asking many questions. Later, I would find myself saying things like, ‘We’re going to have surgery.’”
Domain III: Investigating Domain III: Investigating ProspectsProspects
• Information acquisitionInformation acquisition““I wasn’t hearing anything I wanted I wasn’t hearing anything I wanted to hear.”to hear.”
““I wanted I wanted goodgood honesty, not honesty, not bad bad honesty.”honesty.”
“…proceeded to get drunk and started searching the Internet - which was probably a huge mistake, but in some ways, it is good that I educated myself. Um.. I mean a lot of it just flat scared me to death and made me depressed beyond words.”
• Issues exploredIssues explored
The emotions I was feeling were shock, depression; the worst pain of all was having my son, my little 7 year old son, see me whither away and not be the strong thing that he had come to know. And that was making me feel the worst. Um.. I want to be, I want him to be proud of me.”
Domain IV: Determining ChoiceDomain IV: Determining Choice
• Synthesizing dataSynthesizing data– Expert opinionsExpert opinions
Domain V: ReflectionsDomain V: Reflections
• Treatment experienceTreatment experience
• Precipitating eventPrecipitating event
• Education and knowledge wished forEducation and knowledge wished for
• Lifestyle changeLifestyle change
• Meanings of and reasons for cancerMeanings of and reasons for cancer
Core CategoryCore Category
• Main theme, pulling all other categories Main theme, pulling all other categories togethertogether
• Reflects actions/decisions of Reflects actions/decisions of participantsparticipants
ExpectationExpectation
Health Care
Orientation
Crisis of Diagnosis
Determining ChoiceInvestigating
Prospects
Time crunch
Reflections
Treatment experience
Health Care Orientation
Crisis of Diagnosis
Investigating Prospects
Determining Choice
Time crunch
Reflections
Discussion
Symbolic Interactionism
Meaning– Fear, dread, belief of imminent death if cancer not
removed– Unpleasant, unwelcome disease that could be treated
and eliminated
Language– “Get it out!” “Cut it out!”
• Surgery (excise cancer)
– “Get rid of it.” “Deal with it.”• Pursued other options (eliminate cancer)
Symbolic Interactionism
Thought (mental conversation)– Hope versus harsh reality
• HOPE: doctor assurances, others’ positive experiences, religion, philosophy, spiritual beliefs
• HARSH REALITY: others’ negative experiences, recurrence
short long
Decision-making
My domains (categories)Health Care OrientationHealth Care BeliefsCrisis of Diagnosis
Investigating Prospects
Determining Choice
Treatment ExperienceReflections
Expectation
Decision theory stagesEnvironmental, Internal FactorsBiases, HeuristicsDiagnostic, Identification of the ProblemActions, Obtaining Necessary Information, Production of Possible Solutions or AlternativesEvaluation of Solutions, Selection of Alternative or StrategyImplementation of SelectionEvaluation of Selection, Probabilities for Recurrence, Regret Theory
Utilities, Rewards, Satisficing
Limitations
Sample size
Demographics– Education, ethnicity, SES – insurance
Implications
Provides a research-based framework to explain decisions made in the context of a health crisis.Provides insight to educators, health care providers, and researchers about influences involved in making treatment decisionsFacilitates decision making (understanding of components and personal values)