Decision-making in a health care crisis: Men under 60 diagnosed with prostate cancer Tawna Skousen...

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)