Fletcher, Susan M. PhD; Burley, Mollie B. MRuralHlth (Research); Thomas, Karen E. BAppSc (Physio), APAM; Mitchell, Eleanor K. L. PhD
Evidence supports the benefits of cardiac rehabilitation for secondary prevention of coronary heart disease.1–3 However, descriptions of the participant perspective on these rehabilitation programs are neglected in the literature.4 This is particularly the case in rural areas, where the focus has been on barriers to attendance, such as the lack of transport and travel distance to cardiac rehabilitation. The participant perspective is essential if rehabilitation is to motivate participants to prevent, reduce, and modify risk factors.
This study aimed to evaluate a community-based, cardiac rehabilitation program, Healthy Heart (HH), offered at Latrobe Community Health Service in rural Victoria. The primary focus was to seek participant-centered feedback on what, if any, benefits they had received and to obtain their suggestions for improvements to future programs.
The sample for this research comprised 18 participants who had completed the entire HH program in 2010. Criteria for the HH program participation were a diagnosis of cardiovascular disease, stable medical condition, and referral from a phase 2 (outpatient) cardiac rehabilitation program. Eight participants (7 men and 1 woman; average age, 71.7 years) volunteered to attend a focus group. Six of these participants had a history of myocardial infarction followed by either coronary artery bypass grafting or stenting. One participant had a diagnosis of cardiomyopathy. The remaining participant was a woman who was there as a carer for her husband. The Monash University Human Research ethics committee approved this study. Permission to contact the HH participants was given by Latrobe Community Health Service. Informed consent was obtained from all participants.
Two focus group opportunities were offered to potential participants. The decision to offer 2 opportunities was based on the availability of participants and keeping focus group numbers small to facilitate interaction. Each focus group was facilitated by 2 researchers, who moderated the group by using a semistructured interview guide. Questions covered various aspects of the participant experience of attending the HH program, including the following:
1. How did the HH program meet your needs for recovery from your cardiac event?
2. What did you find the most beneficial aspect of the program?
3. What did you find the least useful aspect of the program?
4. Have you maintained the lifestyle changes you made as a result of your participation in the HH program?
5. What improvements can you suggest for future HH programs?
The discussion was flexible and allowed participants to speak freely about their experience of the program and what had happened subsequently. Each focus group lasted approximately 1 hour and was taped with participant permission.
Conventional content analysis5 was conducted on 2 levels. In the first level, researchers reviewed the transcripts from the focus groups in an effort to understand the data in context. In the second level, data was coded using a line-by-line level analysis of the transcribed data into relevant sentences and phrases. Comparing content across the focus group data created common codes. The common codes were clustered to determine categories and subcategories and synthesize themes. For example, “flicked a switch on” was coded as maintaining motivation and categorized as putting it into practice.
Eighteen people had completed the 2010 HH program. Ten of this group had declined to participate in the research project. The participants had completed the program between 1 and 8 months before attending the focus group. Participant responses to the questions from the 2 focus groups were surprisingly consistent, with no “deviant cases”; thus, the findings are reported as 1 group.
Analysis of focus group data identified 3 themes and 7 subthemes in the participant responses. These themes illustrated not only the success of the program but also the participants' feeling of vulnerability when the program ended.
The first theme, “recovering confidence,” referred to participant experiences during the sessions and is represented in 2 subthemes, “increase in self-confidence” and “supportive environment.”
* The first subtheme, “increase in self-confidence,” illustrated participants' feeling that their attendance at the HH program had increased their ability to exercise. Information about diet and self-management was highly regarded, although participants spoke about the difficulty of transferring this to their everyday lives.
* The second subtheme, “supportive environment,” illustrated how the program structure helped increase participant confidence. The group format was seen as important, because it provided a protected space for participants to test how much exercise they could safely undertake. Encouragement by clinicians was rated very highly. The participants reported initially experiencing high levels of uncertainty about exercise, “I can't do it on my own” (participant 3), but the “good design of the program and the high level of supervision” (participant 4) enabled a restoration of self-confidence.
Putting It Into Practice
The second theme, “putting it into practice,” referred to participants taking responsibility for making lifestyle changes and maintaining motivation.
* The first subtheme, “maintaining motivation,” provided mixed results from participants. Three participants said that regular walking was the most common postprogram activity. Diet changes were reported by 3 participants. Participant 3 said attendance at the program had “flicked a switch on” regarding the need to exercise for health maintenance.
* A second subtheme was “comorbidity.” Three participants reported that preexisting back problems had compromised their ability to exercise regularly. Participant 5 also “struggled to get out of his chair at home,” because of a preexisting depression diagnosis.
* The third subtheme, “family support,” referred to participants' need to receive ongoing support to maintain risk factor reduction. Three participants highlighted the need for family and partners to be supportive. The partner of participant 4 had accompanied him to all HH program sessions; however, other family members were less supportive. Two other participants reflected, “it was harder being single” (participant 1) or “without someone to hold your hand” (participant 2).
The third theme, “feeling abandoned,” referred to participants' difficulties in moving from a structured, supportive environment of the HH program to their normal home life.
* The first subtheme, “feeling alone and isolated” related to a perceived lack of support postprogram. The comment of participant 2 summed it up, “no support, no call back, no followup.” Participants 1 and 4 suggested that they needed more time to restore confidence and followup was necessary to maintain motivation.
* The second subtheme, “linking back into the community,” illustrated how participants struggled in transition from the HH program to other community exercise programs, such as gyms. Even though part of the HH program content was specifically aimed at addressing postprogram transition, participants still reported difficulty accessing community options. Comments included, the prohibitory “cost of sessions at gym” (participant 2), and 2 participants (participants 3 and 4) said that they felt less confident in an unstructured exercise environment.
While the findings show that participants had positive associations between opportunities to learn about diet and self-management, the social aspect of the group, and the reassurance of exercising within a safe environment, the lifestyle changes needed to reduce risk factors and modify behaviors extend beyond the time-limited cardiac rehabilitation program. Participant accounts indicated that the program content was not always strongly linked to long-term, risk factor reduction. While there were individual efforts to adopt modification to diet and/or increase exercise, many participants struggled to maintain any or all of the recommended changes. They reported feeling alone and unsupported in their efforts once the program finished. This difficulty is consistent with findings in a study by Mead et al,6 where participants discussed the importance of having support networks (family and friends) to help them stay on track,
In a study by Tully et al,4 a number of participants reported feeling somewhat directionless when the program ended. Once they became responsible for their own regulation, it was difficult to remain motivated to maintain the health-promoting behaviors that they had developed in the program. Similarly, in the current study, findings revealed that the participants lacked confidence to maintain the desired changes. Common themes in the participant responses suggest a trajectory where they entered the program with decreased confidence, feeling vulnerable and unsafe; however, experienced an increase in confidence because of the security of the program environment, but that this evaporated once the program ended. Postprogram, they expressed their difficulty in maintaining lifestyle changes and struggles to remain motivated. Their postprogram journey left them feeling unsupported and alone. Findings from Gately et al7 confirm that confidence after attending cardiac rehabilitation programs is enhanced, when participants feel that they can continue accessing professional advice and support.
Edmondson et al8 say that there is “abundant evidence to suggest that psychological disorders are unrecognised and undertreated in cardiac populations.” Physical life threats, like acute heart disease, the knowledge of the need for an imminent operation,9 anesthesia, surgery, and cardiopulmonary bypass,10 and/or being in an intensive care unit11,12 are examples of significant stressors, which could be experienced with the intense fear and helplessness associated with the potential to develop posttraumatic stress disorder symptoms. While none of the participants in this study were asked about whether they had experienced strong reactions to any or all of the possible stressors, a previous study13 confirmed that cardiac events are perceived as traumatic by many patients. Furthermore, a significant minority of the participants experience levels of emotional distress serious enough to warrant a diagnosis of or exhibit symptoms of posttraumatic stress disorder more than 6 months postevent.
While not directly stated by participants in this study, the words they used to describe their postprogram feelings hint at the possibility that they are feeling depressed as a result of their cardiac event, the changes they need to make, and, importantly, their lack of confidence in their ability to maintain these changes. Not every participant will feel distressed but it could be useful to screen for symptoms of trauma or stress.
While the HH program clearly met the needs of the participants while enrolled in the program, difficulties were identified postprogram. Participants spoke about an ongoing lack of confidence in their ability to exercise, problems with putting new learning into practice, and feeling unsupported in these endeavors.
Maintaining Linkages: Review and Revise
Toward the end of the program, clients could complete goal-setting exercises for the coming months, steps they will take to reach their goals, difficulties they may encounter, how they will overcome these difficulties, and their level of confidence in achieving their goals. Participants suggested that an occasional review could reassure them that their condition had not deteriorated and they were on track. A followup phone call after 1 month could then assess the maintenance of behavioral changes and goals achieved. Any problems could be addressed at this stage and further phone contact arranged if needed.
A second strategy, raised in focus group discussions, was to identify volunteer mentors (current or past participants who were achieving their goals and maintaining lifestyle changes). These mentors could be matched to struggling mentees and, if mutually agreeable, offer support and encouragement.
Currently, participants are screened for depression, anxiety, and stress by using the Depression Anxiety and Stress Scale (DASS). Findings in this study suggest that posttraumatic stress disorder screening, using the Posttraumatic Stress Disorder Checklist (PCL-C),14 should be added. Screening should occur at commencement of community-based cardiac rehabilitation and again during followup.
The lack of a control group precluded the demonstration that changes observed were a consequence of the cardiac rehabilitation program alone. However, the improvement, reported by participants while in the HH program, was significant.
There was a relatively small sample size. It is not intended for this study to be representative of all cardiac rehabilitation programs, but the findings do offer some direction for other programs to consider. They also point the way for future research to be undertaken using a participant-perspective approach.
Cardiac rehabilitation programs are assumed to provide services in a fixed, deconceptualized, and uniform manner to passive interchangeable subjects.1 While the efficacy of cardiac rehabilitation is ultimately determined by long-term changes in cardiovascular risk, understanding participant perspectives on the sustainability of risk reductions is important. Despite a prevalence of research exploring factors associated with low attendance rates at cardiac rehabilitation programs,15 there has been limited examination of the personal factors that support or hinder the maintenance of behavioral change after attendees have left the program. This study sought to address this gap by asking program participants about their experience of the program and life after completing the program. The messages are mixed but the participants' meaning is clear. Their experience of the program is very positive, but they have identified a need for longer-term support to improve their health outcomes.
Dr Fletcher received funds from Monash University School of Social Work, Ms Burley and Dr Mitchell from the Department of Rural and Indigenous Health, Monash University School of Rural Health, and Ms Thomas from Latrobe Community Health Service. All authors had read and approved the submission of the manuscript.
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cardiac rehabilitation; feeling vulnerable; health outcomes; rural setting