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

1. Decision-making in a health care crisis: Men under 60 diagnosed with prostate cancer Tawna Skousen Supervisory Committee Members: Lynne Durrant, PhD Chair (HPE) Barbara J. Richards, PhD (HPE) Susan L. Morrow, PhD (Educ Psychology) Teresa M. Pavia, PhD (Marketing) Saundra S. Buys, MD (Oncology)

2. Outline • Background & Introduction • Literature Review • Research Questions How I did it • Methods What I found out • Results What I thought about what I found out • Discussion

3. Background & Introduction

4. Prostate cancer is an “old man’s” diseaseAnnual age-specific incidence rates, 1973-2000

5. Literature Review • The Big “C” • Prostate cancer

10. Literature Review • The Big “D” • Decision making • When Big “C” meets Big “D” • Decision making & prostate cancer

11. Research questions

12. Research question #1 • What are the decisions being made by men diagnosed with prostate cancer under age 60?

13. 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?

14. Methods

15. Qualitative focus • Designed to explore human aspects and life’s circumstances • Seeks to understand what the situation/phenomenon/experience means

16. 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

17. Grounded theory, cont. Data CollectionData Analysis First Interview Preliminary Categories Second Interview Refined Categories Third Interview More Refined Categories Close to Saturated Categories Saturation

18. Participants • Recruitment • Sampling

19. Interviews Demographic questionnaire Field observation Archival materials Memos Data collection

20. Data analysis • Concept formation & development • Coding: open, axial, selective • Core category • Concept modification & integration

21. Results

22. -Phone: said biopsy was “positive” for cancer – “so, come in soon, okay?” -Phone: nurse said “you have a little bit of cancer” Medical communication CRISIS of DIAGNOSIS -“Sheer panic”. Wanted cancer out ASAP. -Not overwhelmed or shocked Emotional impact Personality -Even-tempered, handles stuff well Initial management -Job, family responsibilities Developmental stage -”Biggest support is family” Support system

23. Domain I: Health Care Orientation • Family experience • Health care experience • Health care beliefs

24. Domain II: Crisis of Diagnosis • Medical communication • Emotional impact • Initial management • 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.’”

25. Domain III: Investigating Prospects • Information acquisition “I wasn’t hearing anything I wanted to hear.” “I wanted good honesty, not bad 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 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.”

26. Synthesizing data Expert opinions Domain IV: Determining Choice

27. Domain V: Reflections • Treatment experience • Precipitating event • Education and knowledge wished for • Lifestyle change • Meanings of and reasons for cancer

28. Core Category • Main theme, pulling all other categories together • Reflects actions/decisions of participants Expectation

29. Health Care Orientation Crisis of Diagnosis Determining Choice Investigating Prospects Time crunch Reflections Expectation Treatment experience

30. Health Care Orientation Crisis of Diagnosis Investigating Prospects Determining Choice Time crunch Reflections Expectation

31. Discussion

32. 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)

33. 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 shortlong

34. My domains (categories) Health Care Orientation Health Care Beliefs Crisis of Diagnosis Investigating Prospects Determining Choice Treatment Experience Reflections Expectation Decision theory stages Environmental, Internal Factors Biases, Heuristics Diagnostic, Identification of the Problem Actions, Obtaining Necessary Information, Production of Possible Solutions or Alternatives Evaluation of Solutions, Selection of Alternative or Strategy Implementation of Selection Evaluation of Selection, Probabilities for Recurrence, Regret Theory Utilities, Rewards, Satisficing Decision-making

35. Limitations • Sample size • Demographics • Education, ethnicity, SES – insurance

36. 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 decisions • Facilitates decision making (understanding of components and personal values)