Copyright 2011, UCSF/Cindy Wojtecki

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LIVING IN PARTNERSHIP: A GROUNDED THEORY ANALYSIS OF HOW OLDER ADULTS ASSIGN MEANING TO THEIR IMPLANTED DEFIBRILLATOR Cindy Wojtecki, RN, MSN, PhD University of California San Francisco Hartford Center of Geriatric Excellence Cindy.Wojtecki@gmail.com Qualitative Research Methods Forum Denver, CO September 8, 2011

Goals of the Presentation UCSF 4 Describe implantable cardioverter defibrillator (ICD) Provide brief background of study question. Focus on grounded theory methodology, Underpinnings of Symbolic Interactionism (SI) Use of Positional Maps. Discuss model: Living in Partnership. Suggest implications of study findings.

5 Implantable Cardioverter 1. What does it look like? defibrillator 2. How does it work? 3. When is it indicated?

6

MAJOR Life Threat 7

Research Question UCSF 8 How does having an ICD affect the dayto-day life of patients and their families, from the perspective of the older adult?

9

Sudden Cardiac Death (SCD) UCSF 10 DEFINITION: Unexpected circulatory arrest, occurring within an hour of the onset of symptoms, usually due to a cardiac arrhythmia (Zipes, 2006).

Research Gap UCSF 11 Over 25 yrs of research has identified those at highest risk for SCD, amendable to ICD therapy. Less than 25% of participants in these studies were 65yrs. (Pellegrini, et.al, 2008)

Shifting emphasis?? UCSF 12 Securing life through technology acceptance (Burke, 1996) Dealing with technology through chronic disease acceptance?? (2009)

UCSF 13 Theoretical Framework Uncertainty in Illness (Mishel, 1981,1988, 1990)

UCSF 14 Study Aim To examine the impact of the ICD on daily living - as conveyed by study participants.

Recruitment UCSF School of 15 Eligibility Criteria: At least age 65 Currently have an ICD in place At least one year from the implantation date English speaking Able to be interviewed with the S.F. Bay area

Study Sample UCSF School of N = 24 (20 male; 4 female) Ages 65 91(mean 76 yrs) Post-implant 2-19 years (mean 6 yrs) Community-dwellers Majority married (13/24) 21 Retired (3 worked PT) 16

Interview Guide UCSF School of 17 Tell me about having an ICD What is it like for you? Are you aware of it being present? How do you experience that? How long has it been now that you ve had the ICD? Has your experience with it changed over time? Tell me about that.

Interview Guide UCSF School of 18 What has it been like for your family? Do you know anyone else who has an ICD? When and with whom do you talk about the device with? What kind of things do you talk about? Tell me about your future plans? Is there anything that I haven t touched on that you feel is important for me to know?

Grounded Theory Methodology UCSF 19 Glaser and Strauss (1967) Clark (2005) Charmaz (2006)

Symbolic Interactionism (SI) UCSF 20 1. Human beings act toward things on the basis of the meanings that the things have for them. 2. Meaning of such things is derived from, or arises out of, the social interaction that one has with others. 3. Meanings are handled in, and modified through interpretative processes used by the person dealing with the things that are encountered. (Herbert Blumer, 1969)

Data Collection and Analysis UCSF 21 Digitally recorded interviews, transcribed verbatim, reviewed for accuracy. Line by line coding naming each line; incident by incident; breaks up data Focused coding more directed, selective and conceptual Axial Coding answers when, where, why, who, how, and with what consequences.

22

23 Study Findings: Living in Partnership UCSF I m 71. I m at the age where friends and acquaintances have had open heart surgery and it s happening all the time. People come back from it, in some cases not so good, in other case, great. Its miracle stuff, and that s how I view this stuff. They put this little thing in and that s it, nothing, forget it. Do your stuff. Take your grandchildren to a movie. It s fabulous. I never cease to be amazed by what s happening in the life of sciences today. -Mr. Mercedes, 2009

Living in Partnership 24 I m 71. I m at the age where friends and acquaintances, Have had open heart surgery and it s happening all the time. People come back from it, in some cases not so good, in other case, great. Its miracle stuff, and that s how I view this stuff. And now they put this little thing in and that s it, nothing, forget it. Do your stuff. Take your grandchildren to a movie. It s fabulous. I never cease to be amazed by what s happening in the life of sciences today. -Mr. Mercedes, 2009

25 Living in Partnership Characterized by 3 Phases UCSF Entering into the partnership Managing the partnership Contemplating or not contemplating dissolving the partnership

Position Defining Characteristic Expectation for determinin determinate pattern ICD g decision ICD as Controlling timing Reactive and Life saving Only option of death Decisive ICD as Managing Expected and Life extending Next option symptoms routine 26

27

People construct their realities from the symbols around them through interaction UCSF 28 Mr. John James: One time that I know I passed out on the street. The thing revived me. And I wasn t even aware of what had gone on, except that I had fallen down and cut my nose. And so it was easy for me with that experience to think of the thing as definitely a boom.

People construct their realities from the symbols around them through interaction UCSF 29 Mr. John James: When it was first put in, it went off a few times; it hurt, and I did not pass out. When I came to the hospital and got checked outpatient style, the technicians looked at it and said, well, you know, this really shouldn t have gone off. It s not suppose to you know; it wasn t that big of a deal.

People construct their realities from the symbols around them through interaction UCSF 30 Mr. John James: I remember the thing going off every few minutes practically beating me to dead. So this is when it changed from a life saver to being a life threatener. In other words, I have this thing in my body, you know, that is my enemy.

31 Contemplating Dissolving the Partnership UCSF

Defining Characteristic Interpretation of determinate Assumption/Pattern Meaning of ICD Not Not my Decision To Doctor decides Death deferring Contemplating Make Family decides Dissolving God decides Living on borrowed Partnership Timing isn t right time Avoiding conversation Doctor unwilling Life isn t over Family unable lack of just slowing down knowledge, pain of loss Contemplating Quality of Life Expectations of Aging Prolonging Death Dissolving Life is no longer worth Outcome of Aging Partnership living Ultimate Control 32

Bridging the Gap- Implications of Study Findings UCSF 33

Future Qualitative Research UCSF 34 Explore the phenomenon of Identity Rupture that emerged as an interpretation of a public demonstration of a device shock.

Illustration of Identity Rupture UCSF 35 Ms. Jean: I had a brief 5-minute video clip to show in the middle of my lecture. I went and sat down in the front row of the audience to watch the video, and during that time I had another jolt and when you have these, your whole body jerks. I don t know if anyone noticed because people would think I just had a sneeze or something. And then, if you can believe it, I went back up and finished my lecture, and it was a great lecture and people really liked it. But I was a wreck.

36 This research was made possible by: UCSF Hubert Bell Allen Scholarship Century Club Hartford Center of Geriatric Excellence at UCSF Dissertation Committee: Dr. Meg Wallhagen, Dr Paul Varosy, Dr. Patrick Fox and Dr. Janet Shim The participants in the study from whom I have learned the most.

THANK YOU! Cindy Wojtecki, RN, MSN, PhD University of California San Francisco Cindy.Wojtecki@ucsf.edu