Abstract
Cardiovascular disease (CVD) is a leading cause of morbidity and mortality worldwide. Secondary prevention strategies reduce disease progression to heart failure. Rural cardiac patients typically have less access to health care resources to support them in managing secondary prevention, and services to improve quality of life tend to be lacking in rural settings. The study aim was to examine the process that rural cardiac patients go through to access health care and cardiac rehabilitation (CR) following myocardial infarction (MI). In-depth interviews with 11 post-MI participants using Straussian grounded theory were undertaken. Analysis revealed a linear process from hospital discharge to maintaining health. There were five elements: comfort with health information, relationship with health care providers, social support, taking ownership, and availability of/for CR. The core category was “being uncertain.” Findings can be used to identify ways to improve access and address uncertainty stemming from a lack of perceived information and supports following discharge.
Keywords
Introduction
Cardiovascular disease (CVD) is a leading cause of morbidity and mortality worldwide (Berra et al., 2011) and people living in rural areas have a disproportionate CVD burden (American Heart Association, n.d.). Secondary prevention strategies, such as engaging in physical activity, improving diet, weight and stress management, as well as engaging in activities to promote emotional health and self-management, are necessary to reduce disease progression and acute secondary events (Pesut et al., 2012). Evidence suggests that with decreasing lengths of hospital stay after myocardial infarction (MI), patients may receive inadequate information, counseling, and support necessary to further their recovery and rehabilitation (Pesut et al., 2012). Cardiac rehabilitation (CR) can vary significantly by geography. In central Alberta, Canada, CR “provides . . . individualized exercise programs, blood pressure monitoring, and electrocardiograms (ECGs)” to CVD patients (Alberta Health Services [AHS], n.d). It also includes education regarding heart disease and risk factors, stress management, medication, heart healthy eating, emotional health, and energy conservation. Eligibility and format vary by location, and referral is typically required by a family physician, cardiologist, or internist (AHS, 2018). However, access to secondary prevention services remains limited for many rural patients, particularly those who suffer an MI (American Heart Association, n.d.). This is in part due to the limited access to family physicians (King et al., 2006), and specialized services in rural centers (Caldwell & Arthur, 2009).
Although there is a growing body of knowledge that has explored the experiences of having an MI or accessing CR, few have focused specifically on those who reside in rural settings. Approximately 18% of people residing in Canada live in rural settings (Statistics Canada, 2018a). This study directly addresses this gap for a substantial proportion of Canada’s population by generating an in-depth explanation of how rural patients access health care and CR following MI. It was important that the perceptions and beliefs about accessing care after MI were understood in the context of the rural population, so their needs can be better identified and met. Furthermore, understanding of the facilitators and barriers to follow-up health care after MI, and how rural patients access these resources, could improve patient adherence to CR and improve overall health care for cardiac patients. Thus, grounded theory was used to develop an in-depth explanation of how rural patients access health care and CR following MI.
Method
Design
We used an inductive qualitative approach, namely, grounded theory, to develop an in-depth explanation of the process that rural patients underwent when navigating care following MI. Grounded theory is used to examine processes of human behavior and experience “from many different angles—thus developing comprehensive explanations” (Corbin & Strauss, 2015, p. 11). Relative to other qualitative approaches such as phenomenology where the subjective reality of a phenomenon is explored (Polit & Beck, 2004), grounded theory best suited the research aim.
There are three main types of grounded theory: classic, Straussian, and constructivist (Kenny & Fourie, 2015). We chose to use Straussian grounded theory (Corbin & Strauss, 2015) because provides a well-articulated and systematic approach (which is helpful to the novice researcher), and acknowledges potential subjective researcher bias while enabling the researcher to achieve a level of objectivity (Kenny & Fourie, 2015; Singh & Estefan, 2018)
Sampling and Recruitment
Participants were recruited through a series of initiatives. Posters were placed in a rural hospital site; nurses at the site as well as a local pharmacist also informed potential participants about the study and provided information about how to enroll. All potentially interested participants (n = 11) decided to participate.
Convenience, snowball, and theoretical sampling techniques were used. Early participants were recruited using convenience sampling. Using snowball sampling, early participants were asked whether they knew others who might wish to participate. Finally, as data analysis proceeded, theoretical sampling was used. For example, though examination of gender differences was not the focus of this study, additional women were recruited to ensure representation from both genders.
Inclusion criteria for the study were as follows: (a) living in a rural area (e.g., small towns, villages, and other populated places with less than 10,000 persons; Statistics Canada, 2018b); (b) confirmed MI, as reported by the patient; (c) age between 35 and 75 years (chosen based on low incidence of coronary artery disease [CAD] before age 35 and increased incidence of multiple comorbidities after age 75); and (d) English speaking. The exclusion criteria were as follows: (a) residing in a long-term care facility (as residents in assisted living facilities have chronic diseases that are more difficult to manage), (b) having a severe chronic disabling disease (as patients accessing care for severe chronic disabling disease are different from cardiac care specifically), (c) having cognitive disabilities (as those with cognitive disabilities may not be able to provide an accurate account of their experience), and (d) unable to provide informed consent.
Ethics approval for this study was obtained from the Conjoint Health Research Ethics Board at the University of Calgary (REB18-0689). There are special considerations when working with people in close-knit communities, such as those in rural areas. These considerations include that people are often very much aware of their neighbors’ well-being and they tend to have closer relationships with their health care providers, which could result in potential confidentiality issues. Therefore, extra care was taken to ensure anonymity of participants by removing any potentially identifiable information. All participants provided verbal consent prior to the interviews in addition to written informed consent either in person or by mail if interviews were by phone.
Data Collection
Data collection occurred between September 2018 and May 2019. Demographic and clinical data were first collected from participants to characterize the study sample and to later facilitate theoretical sampling. Data were collected using face-to-face in-home as well as telephone-led semistructured interviews, which were audio recorded and transcribed verbatim. Interviews were undertaken by the primary researcher, an experienced cardiology nurse. A beginning interview guide was developed based on the current literature and the collective clinical experience of the research team. Beginning questions included the following: Tell me about your heart attack and what happened after you were discharged from hospital. What referrals did you receive? What advice were you given, if any? Tell me what has made it difficult for you to access care after your heart attack. Tell me about what has made it easy for you to access care after your heart attack. Where have you gone to access care after your heart attack? What have you done to access care after your heart attack? Have you had any help accessing care after your heart attack? and Have you been satisfied with the process? If so, why? If not, why? As interviews and concurrent analysis progressed, more focused questions were asked to clarify concepts as necessary. Interviews usually lasted between 20 and 60 minutes in duration. Data were collected until theoretical saturation occurred, or the point at which no new themes emerged from the data (Glaser & Strauss, 1967).
Data Analysis
Demographic data were entered into IBM SPSS Statistics 23 and summarized using parametric and nonparametric statistics. Analysis of the qualitative data began immediately as they were collected, initially by the primary researcher, then with assistance from the research team members. Memos were created before and after each interview and were included as part of the data analysis. Data analysis occurred concurrently with data collection (Strauss & Corbin, 1998). With each interview, the researcher started with the broad overview question, but began to listen through the lens of the theory that was emerging (Wuest, 2012). No software was used to aide in coding and analysis of qualitative data.
Coding began immediately, and three types of coding were undertaken as part of this process: open, axial, and selective (Strauss & Corbin, 1998). First, open coding was undertaken by examining data line-by-line, constantly comparing them (constant comparative method) for similarities and differences, and then grouping them (Wuest, 2012). Open coding involved further forming categories that eventually lead to description and theory development (Wuest, 2012). As coding continued and categories began to emerge, the features and characteristics within each category were separated (Strauss & Corbin, 1998). Features and categories were then analyzed in terms of dimensional ranges (i.e., frequency, intensity, degree, and duration; Strauss & Corbin, 1998). This allowed each category to have a complex dimensional profile (Strauss & Corbin, 1998). Theoretical coding was also used for data analysis, and began during open coding (Wuest, 2012).
Following open coding, data were grouped into larger categories using axial coding. Strauss and Corbin (1998) defined axial coding as “a set of procedures whereby data are put back together in new ways after open coding, by making connections between concepts” (p. 96). The axial codes were then used to create memos, to further interpret and make sense of the categories. Data were analyzed and coded, and ideas and potential insights began to develop, leading to theoretical memos (Heath & Cowley, 2004).
Finally, selective codes were chosen based on the research question. Selective coding involved the selection of a core category that accounted for most of the variation of the central phenomenon and within which all other categories are able to be integrated (Strauss & Corbin, 1998). Axial codes were combined during this process to condense the categories and assist in coming up with overarching categories. Throughout the coding process, data were constantly compared, from the first interview to second interview, the second interview to the third interview, and so on, resulting in the emergence of categories, and ultimately a core category (Strauss & Corbin, 1998). Through memo writing and constant comparison, the codes began to be linked and the theory began to emerge. The process of data analysis and interviewing continued until theoretical saturation was reached, allowing for the report to be written.
Rigor
Attention to rigor and quality was directed throughout. Hamilton (2020) recently argued that “achieving rigor using qualitative methods among participants living in rural communities is time intensive requiring attention to quality versus quantity of time spent in interviews, building trusting relationships, (and) an awareness of interviewer bias and assumptions” (p. 196). Credibility was enhanced by ensuring prolonged engagement with the participants and the data. The primary researcher is an experienced cardiology nurse who works in rural settings. From that position, the participants were encouraged to share their authentic stories and to be confident that their personal identifiable information would not be shared. To ensure that the emerging theoretical data reflected the views of the participants, interview questions were further developed and honed in on the emerging theoretical data. Likewise, regular meetings with the research team were held to discuss ongoing analysis, and theoretical sampling was used to support the development of the emerging substantive theory.
The primary researcher also brought certain experiences and assumptions to this research. Thus, it was particularly important to consider how reflexivity could be enhanced throughout the research process. To do so, the primary researcher used memoing and reflection. Following each interview and during data analysis, the primary researcher wrote memos about elements of the interviews or the data that invoked opinions or thoughts based on their professional experience. The primary researcher, in consultation with the research team, then reflected on how those opinions or thoughts might have influenced the interview process or the analyses. Through reflexive insight, the primary researcher reevaluated how the interviews would proceed as well as the how the data would be analyzed.
Results
Seven men and four women participated in this study. Their ages ranged from 48 to 73 years at the time of their MI. The majority of the participants were married and were educated to high school level or greater. All but two participants underwent a percutaneous coronary intervention following their MI. Participants were at varying points in their recovery, ranging from less than 1 year up to 5 years post MI. The longer time frame from experiencing an MI gave participants time to reflect on all elements that entered their decision-making. Finally, six of the participants were retired from employment outside the home.
The Timeline
The process that study participants underwent to access health care following an MI is explained based on the following inductively identified timeline or phases: discharge (from hospital), waiting (for access to services), accessing (services), and maintaining (health; see Figure 1).
The uncertainty of recovering from an MI in rural Western Canada.
Discharge
This part of the process refers to participants leaving hospital following the MI. An important component of this phase included the receipt of health information on discharge and the impact of having or not having that information. Those who perceived that they received minimal or no information at discharge reported a much greater challenge as they navigated through the system relative to those who received information.
Waiting
This part of the process refers to the time spent between discharge from hospital and being able to access other health services. There was often a “back and forth” between waiting and accessing, and these were significant parts of the timeline for most participants. Specifically, some participants waited for long periods of time to access care, only to find that they were waiting again for other elements of care. Wait times to access care ranged from 6 weeks to 7 months. Participants waited for a variety of services (see below) and for varying amounts of time.
Accessing
This part of the process refers to participants seeking out and/or obtaining care after their hospital discharge. Participants accessed a variety of services, including cardiologists, family physicians, pharmacists, CR, counseling, and general internists. Most participants had accessed their cardiologist within 3 months of their MI, whereas others waited much longer (up to 7 months). Most participants had followed up with their primary care provider. The primary care provider assisted with managing medications and organizing related referrals. All participants accessed their pharmacist, who provided medication-related information.
Most participants accessed CR to varying degrees. One man had to go back to work before he could complete the program, whereas one woman did not attend CR at all because she was already back to work and the availability was not conducive to her schedule. Another woman was early in her recovery and was waiting to hear about whether she would be referred.
Maintaining
This part of the process refers to the time when participants had accessed all health care resources related to their MI and were following up with their primary care providers as necessary to monitor medications and concerns. Two of the 11 participants had reached this phase. Those who had not yet reached this phase were accessing services on a consistent basis. This phase appeared to be related to length of time since MI.
Being Uncertain
This theory (see Figure 1) offers an explanation of the process of being uncertain. There were three specific elements of being uncertain: plan of care, feeling lost/alone in the system, and having questions and asking how to proceed. There were five other categories related to these three specific elements: comfort with health information, relationship with health care provider, social support, taking ownership, and availability of/for CR.
Plan of care
The majority of the participants in this study experienced uncertainty that arose from a perceived lack of care planning. Of note, six participants reported that they did not have a definite plan of care upon discharge from hospital. One participant shared that “A year later, I supposedly had my final visit (with the cardiologist), but I don’t know if that’s true yet or not.” Another participant had a similar experience and said, “they didn’t say anything about any follow-up or anything.”
Two participants offered a different experience from all of the others. Both men attended a local CR program before it closed and received clear direction about their plan of care on discharge from hospital. For these participants, a referral to CR offered a concrete plan of care that was seen as helpful and supportive. One was instructed to “report to cardiac rehab” and told by the cardiologist “If you have any issues make sure you come see me.” The other shared a similar experience, stating he received direction to “get this set up, start doing your cardio rehab, so I did immediately.” He also spoke of his CR nurse, saying “she set me up with a dietician at the hospital in (local town).” These two participants reported an overall positive experience, compared with many of the other participants.
Feeling lost/alone in the system
Many of the participants in the study reported feeling lost, alone, or isolated in their experiences of recovery from MI. Participants felt they were unsupported and unable to navigate the health care system during the process of accessing care. A woman who had gone back to work just a few weeks after her MI described her experience like this: There’s just nowhere to go and I don’t know what to do . . . you feel very, well, I don’t know just kind of lost, like you don’t know what to do as far as trying to prevent this from happening again.
Another woman identified a lack of consistency in her care when she did not have a primary care provider with whom she could follow up. She saw several physicians at a walk-in clinic but was concerned they would not take the time to get to know her and her medical history before choosing to prescribe more medication.
Most of the doctors at our clinic, if they’re there for three months, they’re usually not taking any more patients . . . and we have no walk in clinic in (local town) and so (urban hospital) or (nearby town) have a walk in clinic . . . that’s a 25 minute drive from (local town), or it’s about 40 minutes into (urban hospital). So, the hope is that somebody will take enough time to read my file.
Having questions and asking how to proceed
Many of the participants reported uncertainty about how to proceed following hospital discharge. Participants had questions about various parts of the process and recovery, and how to proceed without knowing what was next. One of the participants explained at length his experience of seeking help after his MI. For this participant, concerns about whether the diet and exercise health decisions he was making were having a positive impact left him uncertain. He said, “You’re out there trying everything, and you don’t know if it’s gonna work or not.” He also shared, “I’m not sure how to proceed from there . . . If it’s (my symptoms) to happen again, do I just do the same or ignore it? . . . What do I do?” Another participant wondered, “Is there anything I should be doing or could be doing?” Whereas another participant indicated that he was not sure how to make contact with health care providers, “I wasn’t 100% sure . . . do they contact me, or do I contact them?”
Comfort With Health Information
Participants’ comfort with health information varied from having more to less understanding of what information was offered. More comfort was evident in participants who had skilled communication with health care providers, knowledge of their disease, and the ability to positively engage in making improvements to their health. Less comfort was evident in participants who lacked knowledge about their disease and health. This appeared to negatively affect their ability to advocate for themselves and for positive care. Those who were more comfortable with health information asked more questions of their health care providers. One of the men was purposeful in asking questions, saying “Don’t take everything as it’s presented . . . don’t just say they said it [health care providers], or it must be true especially if it’s on the net.” Similarly, another man appeared to be more comfortable with health information and shared that he “knew most of it, being a (first responder) for years . . . but there was some stuff that I didn’t know.”
Most participants relied on the internet for part or all of their health information and found it to be overwhelming. One man shared his concern that “there’s a lot out there on the net . . . telling you what’s good and what’s bad . . . about eating and exercise.” Another man was particularly concerned about the information available, citing “there’s also some conflicting information and that’s disturbing to me.” He also shared that “I think that there’s lots of resources available, choosing the right ones is the challenge.”
Relationship With Health Care Providers
All participants spoke of their relationships with their health care providers. This meant that participants had varying degrees of connection with the various health care providers involved in their post-MI care. Some participants had close relationships with their health care providers, whereas others saw their health care providers as only a point of contact with the health care system.
Primary care provider
Most participants had positive relationships with their primary care provider who were often located in their rural community. One man described his long-standing relationship with his family physician and shared that, because of it, he could “do a lot of the work over the phone.” Another man had a positive relationship with his family physician but had changed physicians after his MI to make services more accessible. Although a participant had a positive relationship with his family physician, he found it difficult to get an appointment with him: He was the busiest man on earth, so I didn’t really see him very often. I would see other doctors within the clinic. To see him was easily anywhere from 30 to 55 days. I would say, book me in with anybody.
One of the women did not have a family physician because one was not available in her town, but she described her relationship with her nurse practitioner: I am comfortable with her. I have known her for many years. Her daughter and my daughter were in the same class in school. I’ve known her since they started kindergarten, so I am comfortable with her. That is a huge thing. She’s difficult to get into just because she is so busy. She’s only in town 2 days a week, but it’s still worth it.
Pharmacist
Many of the participants had a positive relationship with their pharmacist. One participant described his appreciation for how the pharmacist could provide information: The pharmacist that I had here in town was an excellent individual. When I had a new prescription, he would print me out all this different stuff off of the website and hand it to me so I could read up.
Another man echoed this, saying “They’re good where we go. They explained everything.” One man went to his pharmacist rather than his family physician when he had a question about his medications. “Their job is to know drugs” he shared, “I don’t want to take the wrong drug, that’s why I called my pharmacist.” However, he did not share the same sentiments of his pharmacist. He described their relationship as “he’s just dispensing drugs.” Another participant was also disappointed when her pharmacist replied to her question about her medications by saying, “You should do what the doctor says.”
Specialists
Some participants spoke about their relationships and experiences with their cardiologist and other more specialized health care providers with whom they came in contact. One participant described a very positive encounter with his cardiologist who took time with him.
I was really impressed with him, like, he took at least a half hour of actually talking to me and went over my results, you know. Most doctors kind of give you the bums rush, two or three minutes of your time, they are busy. I was very impressed.
Another participant had a different experience. “I have seen three cardiologists so far” she shared. She had been hesitant to follow the plan of care presented to her by each of the cardiologists, questioning whether their plans were right for her.
CR nurse
Two participants developed a positive relationship with their CR nurse as they were able to attend a small, local CR program before it closed. Both men spoke about their experiences with the nurse who ran the program: I was very impressed with the quality of service . . . maybe because the lady that ran it was really sharp. She was very committed to it . . . she had wonderful people skills. It’s not what you always expect of the medical system [someone charming, pleasant, and competent], quite often it’s chaos, when you get into the system. No one knows who is doing what, you know, you get passed down the line, but this was good. She was great to deal with, very open about everything, very professional, very honest . . . this is serious stuff, take it serious. I thought she was very personable and yet professional and very to the point.
The relationship with the CR nurse appeared to contribute significantly to a positive experience for these participants.
Social Support
Most participants received assistance and encouragement as they recovered from their MI, accessed resources, and navigated the health care system. Participants had varied sources and amounts of support. Social support was obtained from family and friends, as well as other MI patients. All the male participants reported having adequate support, whereas only two of the four female participants reported the same. Those with more support reported having a more positive experience than those with less support. One of the participants, who indicated that he “had excellent support” also commented, “you wouldn’t want to do this alone.” One of the women described that she had a high level of support, stating “I had people around all the time, which was nice because you do feel secluded just when you lose your license and live in the country.” Conversely, when asked about her support systems, another woman shared “I think that has been lacking,” which caused her to feel lonely as she recovered from her MI and navigated the health care system.
Family and friends
Most participants cited their spouse as their main support. One of the men described relying on his wife to help him with nutritional changes. “My wife’s done a lot more reading . . . she’s trying to steer us in the proper dietary areas” he shared. Several other men echoed this and had spouses who supported them by doing most of the cooking and following strict guidelines.
One of the women was thankful that her husband was able to take time off work to be with her. She shared that “he stayed home with me for the first three weeks” and she was “lucky to have family [living] within 20 minutes.” Another woman agreed that her husband had been supportive: “He has been wonderful. He is pretty much there helping me doing everything.” Conversely, another participant indicated that she did not have support from her spouse: “He’s pretty healthy, so he doesn’t understand anything [about my health problems].” She also said “he wasn’t responding to me very well . . . and I was quite frustrated with that.”
Two of the men indicated that they had family members who were health care providers. One shared that “they encouraged me, they told me what I needed to do, or not to do.” The other shared that his wife was a nurse and that she knew the best options for physicians in the area: We know people who are in the hospital, they are in the medical community, you get feedback on who is who. They would tell me he shouldn’t be your first choice.
One of the older, divorced participants talked about the support he received from his daughters. He said, “They got their nose in my health care . . . they try their best to keep me honest and make sure I eat lots of raw vegetables.” Another woman who was divorced did not have any support. Rather, she was a support to her aging parents who required extra care.
Several participants indicated that they had friends who were supportive. One woman had a group of women who supported her, particularly when she was unable to drive after her MI. “I was lucky enough to have good coffee row ladies” she shared. “They always made sure somebody picked me up or my husband dropped me off and they brought me home.” Another participant found support from his close friend who was a local doctor: I bounced a few things off of him and informally he has given me his opinion of things. It helped alleviate a little bit of anxiety from time to time, and I was able to bounce a few things off my friend . . . that helped.
Other MI patients
Most participants did not have peer support from other MI patients. This type of support was not something that was readily available, although several participants mentioned that they would have benefited from it: If there were some sort of support groups for information . . . for people with previous heart attacks so they could get information about how they did things or what they did. And what was good and what wasn’t good. Really, what worked and what didn’t.
One of the women commented that she had been part of a peer support program and had received visiting from another woman who had suffered an MI: I was set up with another lady . . . just to talk to . . . because of the pains I was having and she was having issues too . . . for the two of us to talk and say, hey, you’re not the only person that’s going through this. It was just nice to talk to somebody that was kind of going through similar things.
Another woman found it beneficial to talk to her clients when she returned to work as a hair stylist, “I have clients and stuff that have had heart attacks, so we have talked about it . . . they are just kind of a sounding board really, I guess it just helps when you talk about it.”
Taking Ownership
All participants took ownership in their post-MI recovery. This meant that participants were willing to take responsibility for, and action over, their health. However, taking ownership was met with frustration for some participants and success for others. Frustration was high for one woman, who had returned to work only 2 weeks after her MI and had tried several local avenues in an attempt to begin her recovery. She had tried to access the local primary care network for advice on nutrition and exercise but had been denied access due to the acuity of her health. She also went to a local college to see whether they had any exercise programs available. “They won’t even let me join any of the groups because I have had a heart attack” she shared, “I have tried everything.” Despite her fears and reservations, she decided to start her own exercise routine. “I am a competent swimmer” she said, “but I was scared to death.”
Another woman had a similar experience and was particularly frustrated with the lack of answers she was receiving to the questions she asked: It was very disappointing . . . you are coming into (the city), you’re needing some input. So, what was available at the (city hospital), I did make use of that. I don’t have any of the standard reasons for a heart attack. So, I am an oddball, I’m not the standard, you know what I mean.
Having a positive outlook appeared to increase the success participants were having in taking ownership. One of the men demonstrated acceptance of his life following an MI and shared his positive attitude by saying, “You can’t cry because you don’t do it anymore, you’ve got to smile because you did it for 44 years.”
One participant was not able to attend CR as often as he liked because of the distance to services and financial constraints. He thus committed to doing more from home. “I’ve got a bike stand and roller and I am trying to do that (stationary cycling)” he shared, “I am using whatever things I can that don’t cost as much.” He also accepted responsibility as a patient to “ask more questions and do a lot more research” when he was unsure. He said, It’s your obligation to ask questions and to challenge whether or not the care that you are getting is the right care . . . I think that if I lacked the knowledge or determination to seek medical care I could be in trouble. I would rather do what I can for my health and not make those demands on the system.
One woman was early in her recovery from her MI and had not accessed many of the resources that were available. After seeing her sister-in-law go through an MI and bypass surgery the previous year, she chose to be more independent and shared that “I’m trying to help myself a little bit more.” She had advice about moving forward: “The biggest thing is to get out of your house . . . you go crazy sitting in your house when you’re housebound.” One of the men echoed this independence and said, “I just read on my own, books, and whatever I could find on the net” and said to “make sure you’re pushing forward, you know, do your homework, understand your body a little bit.”
Availability of/for CR
Availability of CR was frequently discussed by the participants and availability was primarily expressed as the distance to this service. Most participants had CR services available to them, but services were only available in urban centers. Ten participants were referred to CR, but not all of them knew about the referral. A participant received a call from CR a month after his MI asking why he “hadn’t come to see them.” One of the women had a similar experience “I went back to work and then all of a sudden, I was sent some papers from (anonymized) hospital saying that I was booked for some kind of assessment and for cardiac rehab.” Most participants had to travel upward of 1 hour to access CR, whereas two were able to attend a local CR program before it was closed by the provincial government. A participant described his challenge of getting to CR: That’s part of the challenge . . . to get in there takes an hour. They want you to be on your meds at least two hours before you go in, and to have eaten at least two hours before you go in there, and you can’t go in there after 11 o’clock because you will pass their available slot . . . It would be a lot handier if I could just walk across town and just go across the tracks to the gym rather than having to use up a whole day or half day at least going to rehab in (urban centre).
Two of the men who attended the local CR program before it was closed had a different experience from those who had to travel outside of the community. One of these men said, “it made perfect sense for a rural program.” Whereas, another described his experience: The first months [after your MI] you don’t drive, so for someone to take me to (local town) versus to (urban centre) is quite a difference, rural versus the city . . . even though after I did get my license back or was able to legally drive I preferred the going to (local town) versus going down to (urban hospital). Trying to get someone to drive me into the city in the middle of the city versus (local town), it was quite a difference.
Availability for CR refers to the patient’s ability and availability to attend CR. Several participants were unable to attend CR for varying reasons. A few participants who had returned to work shared their difficulty. One of the men said, There’s no real availability for cardiac rehab that I saw . . . their stuff was scheduled from 8:00 in the morning ‘till 3:30 in the afternoon. Those were the hours they were available . . . those hours I’m in the city . . . already working.
There was an impact based on returning to work. One of the women said, I have just taken so much time off work that I don’t wanna take anymore off and so I can’t get any sort of rehab or counselling or nutritional advice and I think it’s terrible, absolutely terrible.
Another woman was limited in her ability to become fully immersed in the program. She said, “we only went in twice a week. They would like you to go three times, but I didn’t have a driver and my husband works so we went twice a week.”
One of the men was unemployed at the time of his MI and had the time to attend CR, but financial constraints were a concern for him. He shared, “I don’t have a lot of money to go spend on training programs . . . I don’t have a health care program or insurance right now.” He shared that, “they have got a flexible fee schedule . . . they don’t want the fees to be a barrier,” but financial constraints remained a barrier.
Retired participants had fewer barriers to attending CR. Most found the location inconvenient but traveled, nonetheless. One of the men shared that “when you live out of town it is (an inconvenience). I mean it’s not like I had anything pressing going on, but it was a bit of an inconvenience.” Another who was waiting to start the exercise portion of CR shared that he preferred to go to a smaller urban hospital instead of larger urban hospital “from a traffic point of view.”
Discussion
Participants expressed varying degrees of uncertainty while accessing care after their MI. These uncertainties were associated with some key transitions, particularly the transition from hospital to home. Similar insights have emerged in the contemporary literature. For example, Kangovi et al. (2012) found that some of most commonly reported challenges for patients during the transition from hospital to home were feeling unprepared for discharge and having a lack of social support. It is essential that patients who live in rural settings are well supported in their transition home, as their access to health care services is generally more limited. To address this problem, improvement in discharge preparation would not only improve the experience of care but also potentially lead to improved patient outcomes. Snow et al. (2009) suggested that implementing standards of care, such as a minimal list of patient data (i.e., diagnosis and problem list, medications, contact numbers for physicians and institutions involved in care, patient cognitive status, and test results) as part of the transition record to address the gap in patient transition from hospital to home, would be beneficial in reducing these issues. Other improvements could include preparing lists of accessible resources for rural patients, including alternative sources of support for those who are not able to access in-person programs.
Having unanswered questions increased uncertainty for participants. Patients need to be able to ask questions and discuss issues related to their health and plan of care (Grimsbo et al., 2011), otherwise informational needs remain unmet (Weiner et al., 2013). Not knowing what questions to ask and having a lack of comfort in asking questions have been shown to negatively influence the patient experience (Powell et al., 2016). Frequent and effective clinician–patient communication can assist in mitigating uncertainty by enabling patients to ask questions, getting them involved in the decision-making process, and helping to clarify their individual goals for treatment (Street et al., 2005). Furthermore, for communication to be more patient centered, it needs to be uncomplicated, specific, repetitious, minimize medical jargon, and end with a confirmation of patient understanding (Zolnierek & DiMatteo, 2009).
The perceived amount of information received on discharge from hospital appeared to set the trajectory for the participants’ experience of accessing care following their MI. Many of the participants perceived that they did not receive sufficient information and, therefore, did not know what to expect in their recovery. When patients feel that discharge communication is inadequate, they may have difficulty navigating the health care system (Haggerty et al., 2013). This places patients at risk of complications and of readmission to hospital (Askham et al., 2010) and lower quality of life (Haggerty et al., 2013).
Most, but not all, participants developed positive relationships with health care providers, including their family physician/primary care provider. Trust in the physician as someone who communicated clearly, listened to concerns, and made time for them is important to patients (Petricek et al., 2015; Wathen & Harris, 2007). More positive relationships are found among those who have consistent providers and more frequent visits to them, giving them time to establish a trusting relationship (Spooner et al., 2016; Thurman et al., 2019). Indeed, there can be a lack of access to consistent health care providers in rural areas, and pharmacists are often a more accessible source of support and information (King et al., 2006; Wathen & Harris, 2007). Pharmacists were seen by most participants as integral to their recovery. They were seen as the expert for all things related to medications, even over the family physician. Pharmacists can have a positive impact on helping patients transition from hospital to home by providing much-needed education about medications and their side effects (Wathen & Harris, 2007).
Having social support was an important part of each participant’s recovery. It is particularly important for rural patients, as they are unable to drive to appointments in the weeks following their MI and do not have the same access to public forms of transportation as urban dwellers. Rural-living cardiac patients can feel isolated in their recovery journey (Angus et al., 2007) and need to rely on others to provide support (Wathen & Harris, 2007). Lack of social support, in general, can have a greater impact on how patients adjust to their life after their MI (Lurie et al., 2015), increasing the risk of a repeat MI and decreasing their quality of life (Bucholz et al., 2014). Rural-living men and women often work where they live, by farming and caring for families. The additional stressor of residing at their “place of work” while recovering from a cardiac event can be substantial (Angus et al., 2007). All the men in the study perceived they had adequate social support from family and friends and determined that they would not have been able to cope well without it. Spouses were found to be the most important social support for participants (Jensen & Petersson, 2003), followed by children and friends. However, not all women felt appropriately supported.
One aspect that most participants felt was missing was support from other MI patients. Many felt they would have benefited from talking with other MI patients about their experiences. Research indicates it is beneficial for patients to be able to talk with others who are going through the same experience (Junehag et al., 2014). It is more challenging for rural-living cardiac patients to find this kind of support (Angus et al., 2007). There is need for greater access to peer support during the early recovery period following an MI, particularly in rural communities that may lack access to other more formal forms of support.
Although most of the participants in this study attended CR to some degree, they certainly identified location of services as being an inconvenience for them. Consistent with a study by Jensen and Petersson (2003), findings suggested that participants were not always available to attend CR due to timing of services, expenses of transportation, return to work, and/or not seeing the value of attending. In addition, Collins et al. (2016) found that access to and availability of services were inconsistent from one rural community to another. The need for support from family or friends to get to and from CR is also documented in the literature (Rolfe et al., 2010) and was seen as necessary to participant attendance, particularly in the weeks following MI when participants were unable to drive.
Notably, some study participants would have benefited from access to home-based CR programming, as they were unable to access services due to timing and location. Madden et al. (2011) found that many patients could benefit from home-based programming, but it was not always offered as an option. Evidence shows that there are no differences in outcomes for home-based versus center-based CR and that those who participate in home-based programs have marginally higher levels of completion and program adherence (Anderson et al., 2017). In addition, use of innovative smartphone-enabled homecare CR models (Varnfield et al., 2014), technology, and telehealth interventions may assist in overcoming barriers to accessing center-based CR programs (Huang et al., 2015). Tailored home-based programs have offered support for patients and their families, increasing coping skills (Frohmader et al., 2015). However, these types of programs tend to be costly (Anderson et al., 2017) and are not available in all rural areas (Turk-Adawi et al., 2014). Additional barriers to telehealth in rural areas include limited access to high-speed internet (Lints-Martindale et al., 2018) and lack of provider utilization (Taylor et al., 2015).
Limitations
This study has some limitations to consider. A relatively small sample size (though consistent with grounded theory research; Strauss & Corbin, 1998) could render limited generalizability of the results. However, we believe the results will resonate with rural health care providers and can offer valuable insights. Participants were self-selected, and those who volunteered to participate could have a different experience from those who declined. In addition, this study was limited to one region. Further study is needed across Canada and beyond to further explore this. Although we did not propose to study gender differences in rural patients’ experience, this would also be worthy of investigation.
Conclusion
Although there have been studies undertaken about rural patients accessing health care and CR following MI, the majority are focused mainly on the facilitators and barriers to accessing care. To our knowledge, this is the first study using a grounded theory approach in gaining a better understanding of the process that rural patients go through to access health care and CR following an MI. The only notable element for rural-living participants’ access to care post MI was the location of services (i.e., the distance for traveling to services), which has been well documented in previous literature (Shanmugasegaram et al., 2013). Perhaps services for rural-living patients are improving relative to what earlier literature reports about barriers. The research identified in the literature review is often upward of 10 years old and may not reflect current disparities.
Further research is needed about whether health literacy level affects a rural individual’s choice to follow through with CR, the effectiveness of discharge information for rural individuals, and the relationship between health literacy and education level to determine whether further educational interventions need to be done with individuals who have higher education levels. The impact of gender is also underrepresented in the literature. A larger scale research study, such as a survey, could be used to determine educational preferences. In addition, further research is needed about the impact of home-based versus hospital-based CR programming for rural individuals.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
