Hypertension (HTN) is often referred to as “the silent killer” because many affected individuals are unaware they have high blood pressure (BP) and because it is considered to be asymptomatic by many in the healthcare community.1,2 However, HTN may not be silent for 30% to 50% of persons who experience symptoms (eg, headaches, dizziness, palpitations,) they attribute to their BP.2–9 The symptoms of HTN have been described predominantly in terms of the symptom type and frequency of occurrence in 30 years of published research.2–9 Some of the studies also report that women report hypertensive symptoms than men do.3–5 Given that HTN affects more than 40 million American women,10 a potential 12 to 20 million women may experience symptoms they attribute to their HTN.
Symptoms are “subjective phenomena regarded by the individual as an indication or characteristic of a condition departing from normal function, sensation, or appearance.”11(p242) The definition infers that persons with symptoms perceptually connect the experienced symptom to an alteration in their bodies. The connection that persons with HTN make between their symptoms and a change in BP was characterized in 1 previous study of 48 veterans (44 men, 4 women) who believed their BP was elevated when they experienced headaches or dizziness.8 The perceptual connection that women with HTN make between experienced symptoms and changes in their BP has not been substantively described in existing research.
Persons who experience symptoms use self-management strategies to prevent, relieve, and/or terminate their symptoms.12 In existing research, participants with HTN took or skipped their prescribed antihypertensive medication in the presence or absence of experienced symptoms.13–16 There are 2 explanations for the participants’ behaviors in these studies. Participants may be taking their antihypertensive medication to directly relieve any bothersome symptoms or they could be taking their medication to relieve a BP change rather than to directly relieve a distressful symptom. These explanations are tentative as the participants in the existing studies were not directly queried about their reasons for adjusting their medication in response to their symptoms.
Given that women are more likely to report symptoms they attribute to their high BP, they may also be more likely to use the perceived BP changes to guide their symptom and/or BP management. However, the relationship between perceived BP changes and self-management has not been studied. Therefore, the aim of this qualitative research study is to describe the experiences of self-managing perceived BP changes in women with HTN.
The methodology used for this study was van Manen’s17 phenomenology, which aims to explore and describe the lived experiences of individuals. The desired outcome of van Manen’s17 phenomenology is to characterize the universal structures of the phenomenon. This structure is discovered by collecting individual accounts from holders of the experience and combining them in an aggregate form. The study protocol and recruitment materials were reviewed and approved by the university’s institutional review board before participant recruitment and data collection.
Purposive criterion sampling was used to form the study sample. Criteria for inclusion were that women had to be (a) able to tell their BP had changed based on what they felt and/or experienced symptoms they attributed to HTN, (b) white or black, between the ages of 18 and 65 years, able speak, read, and understand English, have HTN for at least 2 years, and (c) taking antihypertensive medication. Women were not eligible if they had any self-reported psychiatric illness or demonstrated any cognitive impairment through abnormal scores on the Mini-Cog cognitive screening measure (3-word recall and clock drawing).18
Flyers and Internet advertisements were used to recruit women from the university campus and other community settings. Interested individuals called the lead author and were screened by telephone for the inclusion and exclusion criteria. Women who met the inclusion criteria during the screening by telephone were invited to meet the principal investigator (PI) to complete the Mini-Cog screening measure in person and then participate in an interview. Participants were given an information sheet describing the study before starting the interview session. Participants were interviewed by the PI in a private location of their choice (eg, home, research site, community clinic). The average interview was 42.84 minutes in length (SD, 10.03 minutes; range, 27–63 minutes).
Two types of data were collected: demographic information to describe the sample and textual data from semistructured interviews. Participants selected a pseudonym that was the identifier for their information and responses in the study. No personal identifying information was collected. To obtain demographic data, women were queried about their age, ethnicity, years living with HTN, annual income, years of education, and comorbid illnesses. Textual data were collected using a semistructured interview guide to ensure consistency in interviewing participants. Three questions were included in the interview guide. The first question, “tell me what it is like living with high blood pressure,” was a broad inquiry intended to get the participants to talk about their experiences and set the direction of the interview. The other 2 questions, “tell me what’s happening to your blood pressure when you feel… (eg, headaches, dizziness)” and “what do you do when you feel (eg, headaches, dizziness), got the participants to discuss their experiences in detail. All interviews were digitally recorded and transcribed. At the end of each interview, the PI created field notes of the interaction. In addition, the PI kept a self-reflective journal to recognize and acknowledge her preconceptions and personal beliefs about the participants and their responses.
The textual data were analyzed using van Manen’s17 strategy to identify the essential themes that characterize the experience of self-managing perceived BP changes. The PI highlighted sentences and/or key words from an individual participant’s text and applied descriptive codes because they yielded meaning about the phenomenon. The descriptive codes from individual texts were next interpreted into higher-level themes that characterized the experience for the entire sample. The second author verified the initial data analysis from the principal investigator. The third author then independently verified the themes discovered by the first authors. Data collection and analysis were concurrent activities until redundancy of the themes was achieved.
Study rigor was ensured by using Lincoln and Guba’s19 trustworthiness criteria. Credibility (ie, the truthfulness of the findings) was established by prolonged engagement with the study.19 Several hours were spent in face-to-face contact with the participants and many more hours were spent analyzing their responses in the textual data. Dependability (ie, repeatability of the findings) was demonstrated by using a semistructured interview guide and digitally recording the interviews.19 Confirmability (ie, the findings are shaped by the participants’ experiences and not the researcher’s attributes) was demonstrated by confirmation of the themes by 2 independent investigators.19 An audit trail was established consisting of self-reflective journal entries, field notes, and memos of study-related decisions and procedures in NVivo 10. Transferability (ie, applicability of the findings to other contexts) was demonstrated by providing thick descriptions of the participants’ experiences.19
Thirteen women (6 white, 7 black) formed the sample for this study. They were middle aged (mean [SD], 50.53 [9.62] years; range, 26–59 years), experienced in living with HTN (mean [SD], 10.76 [9.50] years; range, 3–36 years), well educated (mean [SD], 14.00 [1.91] years; range, 12–18 years), and low income (93% reported an income of <$24 999 per year). Diabetes, asthma, chronic obstructive pulmonary disease, and stroke/transient ischemic attacks were comorbid illnesses reported by some of the participants (Table).
One central theme and 4 subthemes comprised the essential themes from the textual data that depicted the women’s experiences. The central theme, “getting to normal,” described the need of the women to get their BP to normal. The 4 subthemes characterized the self-management strategies the women used to get their BP to normal: (a) I can tell, (b) tending to it, (c) the wake-up call, and (d) doing it right. The central and subthemes are discussed individually with supporting examples from participants’ responses taken unedited from the texts.
Getting to Normal
The central theme of “getting to normal” emerged as the women described how they needed their BP to get to normal to live as normally as possible. This desire was captured by a participant who noted, “as long as my blood pressure’s doing fine, it’s not high or anything, it’s a normal level, it’s like living any other pattern, like before I had high blood pressure.”
Many participants reported that they did not feel well enough to do the things they needed to do on a daily basis when their BP was not normal. As 1 woman described, “I cannot do the things that I do because of the feeling I get from my blood pressure being too high, which is I be too tired to do anything.” Participants’ ability to live their lives normally and fulfill their responsibilities was impaired when their BP was not normal.
Many participants were fearful of negative health outcomes from having BP that was not normal. One concern was having catastrophic health problems such as strokes and kidney failure as a result of their BP. One woman stated, “I always think about, You know what? You’re going to end up having a stroke if you keep wearing your blood pressure system down.” Another concern voiced by many women was that they would not live as long as possible if their BP was too high. Many participants were mothers and grandmothers and wanted to be around to see their family grow up. One participant wished she had done things differently earlier in her life:
My goal is really to take care of myself, see my grandkids get older, because it was like, if I woulda took care of myself, like I said, like 10 years from now, I don’t think I woulda been in the predicament I’m in now.
For the participants, getting their BP to normal was necessary to allow them to feel normal and live their daily lives. Having a normal BP was also important to avoid catastrophic health problems and premature death.
I can tell. The subtheme of “I can tell” appeared from the women’s stories as they described how they could tell when their BP was not normal. The participants’ ability to tell that their BP was higher than normal was based on knowledge of their bodies, experienced symptoms, and exposure to triggers. Some participants described how knowing their bodies informed them about changes. One participant recalled:
I think it’s real important because you have to be able to know…to me you hafta be able to know your body and what’s causing what. If you’re gettin’ a pain somewhere, there’s a reason for it. This way I know.
All the participants experienced symptoms that indicated a change in their BP. The most frequently reported symptoms of high BP were headaches, vision changes, turning red, swelling, dizziness, feeling tired, feeling their heart beat, and hearing or feeling the blood rush to their head. Headaches were bothersome symptoms for many of the participants. For 1 participant, “when I get a headache, I know it’s [BP] up. Now, when I hear it, I know it’s a lot higher than up little bit.” Some participants experienced a progression and/or combination of symptoms that represented BP that got progressively higher. One woman described:
Your vision gets a little blurry. Sometimes you turn your head real fast and when your pressure’s up, it’s a delay in the head. After you turn your head, you’re still waiting on your vision to come with you. And that’s when it’s very high. In the back of my head, I can feel the pressure.
All the participants had at least 1 symptom that they believed indicated that their BP was higher than normal. Only 2 participants described BP changes they thought meant their BP was too low, specifically, when they became lightheaded.
Many women could tell that their BP was getting higher after exposure to or engaging with triggers. One participant characterized “triggers” as:
I know what could trigger my blood pressure. I know foods that trigger it. I know situations that can trigger it, and I’ve been working really hard trying to minimize some things and keep my stress level down so that my blood pressure won’t rocket sky high.
Their triggers were in the form of stressful or emotional situations and/or eating fatty or salty foods. One participant noted, “I can tell when I’m getting stressed to the point where it’s messing with my blood pressure.” For another participant, “A bag of chips will run my blood pressure up.” Many women were aware of their triggers that elicited an undesirable change in their BP.
Some participants believed that they were very sure they could tell that their BP was higher than normal. One participant noted, “Yeah, I’m like 99% sure, especially about the pressure part. I may toggle back and forth between my son stressing me out and a sinus headache, but when it’s in the back, I know what it is.”
Tending to It. The subtheme of “tending to it” emerged from the women’s’ stories as they acted immediately to “tend” to their elevated BP. One participant characterized this theme when she described, “If I don’t tend to it right away, then I get the tightness in my neck or the headache will follow and I‘m really tired.” Participants took different actions to tend to an acute change in their BP. One action some women took was to measure their BP at home, the drugstore, or the physician’s office to make sure that their BP was actually higher than normal. Other participants took analgesic, sinus, and/or antihypertensive medication when they got a headache. One participant described it this way: “I take Tylenol and stuff like that, it don’t work. That’s how I know I got it. That’s how I know a high blood pressure headache.” Other actions that participants took to tend to a BP change included calming down and being still, taking extra antihypertensive medication, and going to the physician. Participants were asked what they expected to happen to their BP and/or symptoms as a result of their “tending” actions. The women wanted to get their BP down as quickly as possible rather relieving any distressful symptom(s).
The Wake-up Call. The subtheme of the “wake-up call” emerged when some participants experienced a serious health threat or scare that made them decide it was time to take care of their BP. Two participants had a stroke or transient ischemic attack that scared them. One woman reported, “My blood pressure was up high, and I said ‘I’ve got to get serious about this.’ That’s what the doctor said, he said, ‘Because you didn’t realize you had a stroke,’ and which I didn’t.” A different participant talked about what happened when she did not take her antihypertensive medication consistently, “I start back after I leave, get out of the hospital, I’ll take it [medication]. Then I stop again and then it was so…like I said I was in the hospital almost half a year for the same thing.”
These women conveyed 2 messages in their stories about their wake-up calls. First, they acknowledged that they may not have been doing the things they should be doing to care for their BP. Second, a serious illness or hospitalization was an impetus for them to take their HTN seriously.
Doing It Right. “Doing it right” emerged as a subtheme as many women described that they knew, tried, and/or did the “right” things to get their BP to normal on a daily basis. One participant characterized doing it right as “making sure that I’m exercising frequently, making sure that I’m eating the appropriate food groups, and staying away from unhealthy things.” Many of their activities that they described in doing it right were actions that they performed themselves, such as reducing stress, watching their diet to eliminate salt and fat, losing weight, exercising, and stopping smoking and drinking. Taking antihypertensive medication was seen by many women as essential to keep their BP normal. One woman participant noted, “If I take the medication every day, I feel like I’m normal. I have normal blood pressure.”
Some women used home remedies such as garlic and vinegar to keep their BP down. They learned these remedies from their families and friends. One participant described, “I’ll take a teaspoon of apple cider vinegar that my aunt from down south told me will lower your pressure. Vinegar keeps your pressure down and I’d eat a lot of stuff with garlic.” They used these remedies when they saw their family members who used them live into old age without problems from HTN.
Some women needed help from physicians, friends, and family to keep their BP down. The women often liked their physicians but were frustrated when they got only prescriptions for medication and not actual time to discuss their concerns and questions about their BP and health. One participant described, “Usually, unless you’re getting a physical, you only have about 10 minutes with the doctor if that. They come in for a minute and they’re in a hurry, so sometimes you can’t go through everything with them.” Some women got praise from their physicians about their self-management when their BP was normal at visits. Other participants got more negative feedback and questions about what they were or were not doing when their BP was elevated at appointments.
Friends and family provided instrumental support to help some women to keep their BP down. One woman reported that when she was angry or upset, she would call a friend who she referred to as her “blood pressure sponsor.” Another participant went shopping with a friend who was a member of Weight Watchers and the friend taught her about making better food choices. These women acknowledged that their friends were instrumental in their efforts to keep their BP down.
Getting to normal, the central theme of the study, has not been studied in HTN but is consistent with research of women after myocardial infarction (MI) or coronary artery disease.20–22 For the participants in this study, having normal BP meant they would be able to live normally without interference from their HTN. Similarly, women with MI believed that their lives were or would return to normal while symptom-free or having their coronary artery disease treated with a procedure.20–22 The common link between the women in this study and participants with MI is being in a stable state from their cardiovascular disease. Clinicians and patients with HTN may share a mutual goal of achieving a stable BP to promote health and well-being. In turn, clinicians and patients can partner to develop individualized patient strategies to meet this desired goal.
Participants in the current study strongly believed that they could determine a change in their BP based on symptoms and/or other body sensations. This finding is consistent with previous studies of HTN and other cardiovascular diseases.2–9,23,24 In the current study, the women used their knowledge of their bodies and experienced symptoms to help them determine if their BP was elevated. In studies of MI or previous stroke, participants acquired knowledge from previous illness experiences that allowed them to connect their symptoms to what was perceived as abnormal in their bodies.23,24 The symptoms that the women in the current study attributed to their rising BP (eg, headaches, vision changes, flushing, dizziness, and palpitations) were consistent with the symptoms of HTN from existing research.2–9 Thus, current study findings provide additional information to the knowledge of how women with HTN detect changes in their BP.
The women’s “tending to it” actions were consistent with the limited knowledge of self-managing symptoms in persons with HTN.8,13–15 Participants in other studies took antihypertensive medication when they experienced their symptoms from high BP.8,13–15 However, participants in the other studies were not queried directly about why they took their medication and/or the expected outcomes of their actions. The 13 women in the present study were queried about why they took their medication and asked what other types of actions they took to get their BP down quickly to relieve their symptoms. Results provided are important information for providers to consider. For example, women reported using additional medications that might actually raise their BP higher (eg, over-the-counter sinus medications). In addition, our finding of a relationship between episodic BP self-management and symptom relief is new information that has not been described in any previous research study.
The BP wake-up calls reported by the participants in this study are consistent with the experiences of patients after MI.23 Some participants in the current study got a wake-up call after being hospitalized and/or after experiencing a stroke or transient ischemic attack as a result of their uncontrolled BP. The result of their experiences was a commitment to become more serious about caring for their HTN. This impetus to make changes was similar to that of participants in another study who were motivated to stop smoking and improve their diets after getting a wake-up call after their MI.23 The current study adds to a small body of research regarding wake-up calls as a possible stimulus for behavior change in persons with cardiovascular diseases. The concept of wake-up calls and ensuing self-management in patients with HTN and other chronic cardiovascular diseases merits further research attention.
In “doing it right,” the daily actions that participants performed to control their BP reflect the “right” or recommended lifestyle behaviors needed to control HTN.24 These recommended lifestyle behaviors include reducing stress; controlling weight; getting exercise; avoiding tobacco and alcohol; eating fruits, vegetables, and low-fat dairy products; avoiding dietary sodium and fat; and taking antihypertensive medication.24 The participants in this study held unique views about their BP as symptomatic while simultaneously endorsing the “right” or recommended actions for controlling BP. Clinicians and researchers need to carefully assess patients with HTN for their knowledge of and daily self-management routines used for BP control.
Potential limitations were identified in this study. The participants were a middle-aged, well-educated sample of black and white women. Their experiences may differ from those of women of different ages, educational levels, and ethnic backgrounds. The women’s experiences may also differ from those of men. Women who did not volunteer to participate may have different experiences than the recruited study sample.
Implications for Practice
The results of this study have 2 important implications for clinicians who manage persons with symptom from high BP. First, the women in this study could tell that their BP was high based on their experienced symptoms. The finding is not supported by recommendations in existing BP control guidelines advocating that patients cannot tell that their BP is elevated based on their feelings and/or symptoms.25 Providers need to be aware that patients may have strongly held beliefs about their BP and its management that may be inconsistent with provider beliefs. Second, the episodic BP self-management strategies that the participants used to relieve their symptoms have not been described in previous research studies. Clinicians need to assess what their patients with HTN are doing to acutely self-manage their BP elevations and any bothersome symptoms.
Hypertension was not silent for the women in this study, who could tell when their BP was not normal; they tended to it, but sometimes, it took a wake-up call to get them to do the right things, all in an effort to get to normal. This study contributes new knowledge about HTN in 2 ways. First, participants believed that they could tell that their BP changed from normal based on their symptoms, a result that departed from published guidelines for BP control.25 Second, their perceived BP changes were used to guide self-management strategies. Participants used a process of actions that included both episodic BP-driven symptom management and day-to-day behaviors to get and/or keep their BP normal.
What’s New and Important
- Perceived BP changes may cause distressful symptoms in women with HTN.
- Women with HTN need normal BP to feel and live normally.
- Self-management of perceived BP changes includes both episodic symptom-driven and day-to-day actions to get BP back to normal.
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