Faculty of Nursing

1. Faculty of Nursing WOMEN’S EXPERIENCES OF SYMPTOMATIC HEART DISEASE Cheri Ann Hernandez, RN, PhD, CDE, Associate Professor Karen Williamson, RN, MScN, Assistant Professor Debbie Kane, RN, MScN, PhD(c), Associate Professor

2. Objective: It is known that women as well as men are candidates for myocardial infarction (MI) and that women’s symptoms of angina or MI may be different than those of men. However, a deep understanding of effective educational materials and programs. The purpose of this study was to explicate the experience of living with heart disease in women who have been diagnosed with either angina or MI. Design: Focus group methodology, a qualitative research method, was utilized. Population, Sample, Setting, Years: Women between the ages of 35 and 75 are being recruited to participate in one of four focus groups. Methods: The first focus group was held with 7 women, four of whom already had and MI. All focus groups will be moderated by an experienced focus group researcher, audiotaped, and transcribed verbatim. Members of the research team will analyze the data for themes separately, and then come together and agree on the analysis and questions for the next focus group. Results: The results of the first focus group session indicate that there are three major process, each containing several sub process, in the experience of heart disease: delaying, denying, and restricting. Contrary to transitional belief that delaying entry to the health care system is a passive process, participants described delaying as a very active, meaningful process. Conclusions: preliminary conclusions are that women very actively construct their knowledge and experience with heart disease and frequently do so without the help of nurses, physicians and other health care professionals, although this input is desired. Implications: The experiences of these seven women reflect the need for changes in the health care relationship, content and design of health care messages, and delivery of cardiac prevention and aftercare programs.

3. PURPOSE The purpose of this study was to explicate the experience for living with heart disease in women who have been diagnosed with either angina or myocardial infarction. The specific areas being explored are: 1) How did women perceive their symptoms prior to the diagnosis of angina? 2) How do women respond to the occurrence of angina and what factors influence their responses? 3) What other cues occur simultaneously with angina? 4) What current or future lifestyle changes or plans do women have?

4. LITERATURE REVIEW There is an increasing awareness that the risks for developing coronary artery disease (CAD) may be as prevalent for women as for men. CAD is most responsible for mortality and morbidity in women. Women do not identify heart disease as a female problem (Jensen & King, 1997). Women may report angina as a symptom of CAD but other symptoms have also been identified. These include back pain, paroxysmal nocturnal dyspnea, and tooth ache (DeVon & Zervie, 2002; Penque, Halm, Smith, Deutsche, Van Roekel, McLaughlin, Dzubay, Doll, & Beahrs, 1998). Psychological processes such as issues of control, perceived insignificance and perceptions of threat, coupled with role responsibilities appear to affect women’s decisions to seek care (Dempsey, Dracup, & Moser, 1995; Williamson, 2000).

5. METHODOLOGY: DESIGN Four focus groups of approximately 7 to 12 women in each group.

6. METHODOLOGY: SELECTION CRITERIAWomen between the ages of 35 and 75. Diagnosed with angina or myocardial infarction. SAMPLE Seven women: ages 48 - 70Five women had been diagnosed with MI; Two women had been diagnosed with angina only.

7. METHODOLOGY: PROCEDURE Each focus group will be approximately three hours in duration and will be audiotaped with a dual tape system to prevent data loss. All audiotaped transcripts will be transcribed verbatim to facilitate the subsequent analysis.

8. RESULTS The results of the first focus group of seven women indicate that there are three major processes in the experience of symptomatic heart disease: delaying, denying, and restricting.

9. RESULTS: DELAYING Living with symptomatic heart disease involves delaying, but delaying is not a passive process. The women have a lot of thinking and checking work to do. Some of the properties of delaying are: * Attributing cues/symptoms to alternative explanation * Watchful waiting * Self-comforting measures * Comparing * Permission-seeking * Persisting in spite of systems-entry problems

10. RESULTS: DELAYING Vanessa: I didn’t really know I had heart disease until I actually had a heart attack. I was four days into the heart attack before I even went into the hospital and it was just a really fluky thing. I wouldn’t have gone. I was having a little bit of shortness of breath and basically I’ve had asthma so I just attributed it to asthma.

11. RESULTS: DELAYING Julia: Actually, I was in the unemployment office when my symptoms started and I told her I wasn’t feeling well. And I left there and I thought, “Well, I’m going to go to lunch.” Uh, it was a Friday and they had bean soup at this one restaurant so I thought, “I”m going to go pick up some soup and go home because I’m coming down with something, you know?” And so that’s what I did. But I never ever got to eat it because I, I just, the symptoms got worse and that’s when I called my brother-in-law and he said about going to the hospital. So it must have been four or five hours before I went in [to the hospital].

12. RESULTS: DENYING Living with symptomatic heart disease involves denying. Denying comes in many forms, some subtle but others readily acknowledged. Denying can be verbal (attributing, acknowledging) or mental (bargaining, ignoring) action or inaction. Some aspects of denying included: * Denying any problems prior to hospitalization * Denying anything wrong in spite of symptoms that required an ER visit * Arguing with the doctor who diagnosed the heart problem * Not believing she had a heart attack * Denying she was a candidate for a heart attack in spite of family history

13. RESULTS: DENYING Val: I think I’m still living in denial. I don’t really thing there’s anything wrong with me. I just get short of breath, you know. I’ve got a bottle of nitro. I’ve never used it. I’ve used it a couple of times, gagged, and I thought, “This is crap, you know, I’m not going to have this stuff, a spray. But I don’t use it...A few times I’ve tried it. I thought, you know, my husband says, “Where’s your nitro”? And I’ll squirt it and it doesn’t really do anything for me. Amy: Well, I’d like to say there’s a lot of denial. I noticed with myself, where I say, “Okay now I’ll be good.” You know you do this stupid bargaining business....when I look back on it I did have a lot of those things [cues/symptoms of heart attack] where I...especially when I started reading and I said, “Gee, I’ve had all of those things.”

14. RESULTS: RESTRICTING Living with symptomatic heart disease is restricting. Women expressed their feelings of being restricted or limited in terms of spontaneity, duration or type of activities, including recreation. They discussed being limited in terms of potential locations for living or travel as a result of their desire to have ready and quick access to hospitals.

15. RESULTS: RESTRICTING Belinda: I don’t have time for it [heart disease]. It’s aggravating, it stops you from doing things that you want to do. You don’t want to go too far from home. You seem to have closed your world in a little closer because you don’t want to venture off too far from medication and from help… So now when the symptoms do get worse, it’s like, “Do I go to the hospital or don’t I? Is this part of it or isn’t it? Is it, you know?” And I find that I’ve closed my world a little bit tighter than what it used to be.

16. RESULTS: RESTRICTING Scarlet: So my life totally changed and this is what my husband misses. You know, he had an unpredictable wife, someone who pretty much came and went when she pleased but was always there for him, don’t get me wrong. And his life was always, I don’t know, what would you say? It’s boring now I think. And before it was kind of like [spontaneous]...And my children will tell you the same thing. I would pop in at my kids’ house and have a bit to eat, grab one of my grandchildren and take them home for a couple of days., or sometimes, well I had five boys for a couple of days or whatever. I can’t do that now.

17. CONCLUSIONS Preliminary conclusions are symptomatic heart disease involves delaying, denying and restricting. Women very actively construct their knowledge and experience with heart disease and frequently do so without the help of nurses, physicians and other health care professionals, although this input is desired.

18. IMPLICATIONS These results are preliminary. However, the experiences of these seven women reflect the need for changes in the health care relationship, content and design of health care messages, and delivery of cardiac prevention and aftercare programs. These strategies will promote awareness of women’s risk for heart disease and, hopefully, result in earlier treatment and better health outcomes.