- Email: [email protected]
‘Getting back to normal’: patients’ expectations of cardiac rehabilitation
Physiotherapy 90 (2004) 125–131
‘Getting back to normal’: patients’ expectations of cardiac rehabilitation Caroline Hird a , Chris Upton a , Rosemary A. Chesson b,∗ b
a Physiotherapy Department, Grampian University Hospitals NHS Trust, Aberdeen, UK Health Services Research Group, Faculty of Health and Social Care, The Robert Gordon University, Garthdee Road, Garthdee, Aberdeen AB10 7QG, UK
Abstract Objectives To identify cardiac patients’ perceptions of their own health and health problems, especially to establish patients’ understanding of the main aims of cardiac rehabilitation; to delineate patients’ perceptions of the role of exercise and diet in rehabilitation; to determine patients’ concerns regarding participation and to examine obstacles to patient involvement in cardiac rehabilitation. Design A qualitative approach was undertaken using a prospective descriptive study design. Patients participated in semi-structured interviews of approximately 40 minutes duration. Responses to questions were coded and answers grouped in clusters and main themes identified through a consensual process. Setting A cardiac unit in an acute teaching hospital in North East Scotland. Participants A convenience sample of 50 patients, 34 women and 16 men, were interviewed. The majority had undergone coronary artery bypass surgery. Main outcome measures Responses to questions as part of an interview schedule developed specifically for the study. Results Many respondents associated cardiac rehabilitation with recovery from surgery reflecting that patients had limited knowledge of cardiac disease. Patients described cardiac rehabilitation in terms of undertaking specific activities, especially exercise. Thirty-six interviewees referred directly to exercise/walking, while nine patients referred to relaxation/stress reduction and four to diet. Seventy percent of participants (35) reported receiving information on cardiac rehabilitation, while 30% (15) said that ‘nobody’ had spoken to them about it. Seventeen interviewees identified transport difficulties and responsibilities as a carer as barriers to attendance. Overall, some patients were ambivalent regarding the need to attend a cardiac rehabilitation programme. Conclusions Study participants had a limited understanding of cardiac rehabilitation and is role in reducing the risk of future cardiac problems. The outlook of the patients interviewed may be far removed from that of health professionals. © 2004 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved. Keywords: Patients; Cardiac rehabilitation; Service planning
Introduction Cardiac rehabilitation Coronary heart disease is the major cause of death in the UK, although, recently mortality has been declining. There is a growing body of evidence indicating that cardiac rehabilitation may lead to lower rates of mortality and morbidity by reducing cardiac risk factors [1]. The aims of a cardiac rehabilitation programme are to ‘facilitate physical, psychological and emotional recovery and enable patients to achieve and maintain better health’ [2]. During the latter half ∗ Corresponding author. Tel.: +44-1224-263040; fax: +44-1224-263042. E-mail address: [email protected] (R.A. Chesson).
of the 20th century there has been a significant increase in the provision of cardiac rehabilitation [3,4]. More recently this has been promoted through both government recommendation, for example in England by the National Service Framework for Coronary Heart Disease in England [5] and in Scotland through the Scottish Intercollegiate Guidelines Network [6] and Clinical Standards Board for Scotland [7] (Quality Improvement Scotland). The majority of cardiac rehabilitation programmes are exercise-based and are delivered in hospital through out-patient departments [1]. It has been increasingly recognised that ‘. . . cardiac rehabilitation is greater than the sum of its parts. It consists of exercise training, educational, psychological and psychosocial interventions’ [1]. Reflecting this, a team approach is advocated [8]. In particular, in recent years, the trend has been towards
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individualised rehabilitation programmes [9]. Yet, although an individualised approach to rehabilitation is advocated, there is a dearth of qualitative research in cardiac rehabilitation [10] and there are few, if any studies, which focus on the patient’s rather than the professional’s perspective. Patient involvement There is a world-wide trend towards patient and community involvement in healthcare decision making. In recent years in the UK, a wide range of initiatives have taken place. In Scotland, key policy documents, such as Designed to Care [11], Our National Health: A Plan for Action, A Plan for Change [12] and Patient Focus and Public Involvement [13] demonstrate the Scottish executive’s commitment to patient involvement. For example, in Our National Health, it is stated that ‘it is no longer good enough to simply do things to people; a modern health care service must do things with the people it serves’ (own emphasis). It is acknowledged that ‘there has to be a culture change in the way service interacts with the people it serves and the way services are delivered’ [12]. Part of the culture change is listening to patients and avoiding making assumptions about what they know and what they want [14]. The study here focuses on the perceptions of people with severe coronary heart disease. The main aims of the project were to determine patients’ expectations of cardiac rehabilitation and explore how these might influence participation in cardiac rehabilitation programmes. Study objectives The main objectives were to: 1. identify patients’ perceptions of their own health and health problem; 2. establish patients’ understanding of the main aims of the programme; 3. delineate perceptions of the role of exercise and diet in rehabilitation; 4. determine patients’ concerns regarding participation, especially with reference to group membership; 5. examine obstacles to patient involvement in the programme.
Study design Setting The study was based on an acute teaching hospital in the North East of Scotland. Grampian University Hospitals NHS Trust offers a phase III cardiac rehabilitation programme to all patients undergoing cardiac surgery. Every patient living within commuting distance of the acute teaching hospital is
invited to attend the programme and is given an appointment to attend 6 weeks post-surgery. Each attendee completes 15 h of rehabilitation including exercise, relaxation and education. There is no provision for patient transport. An earlier audit of the cardiac rehabilitation programme within the Trust had revealed that nearly half all patients who were given an appointment for the first session failed to attend. This prospective descriptive study was undertaken in late 1999 and included a convenience sample of 50 consecutive patients admitted to the cardiac unit. People were eligible for inclusion if they had experienced heart surgery and were eligible for cardiac rehabilitation. The main reason for ineligibility was geographical distance from a trust hospital site. Pilot A form was developed for collecting information on patients’ age, gender, marital status, home location and type of surgery, together with an interview schedule focusing on patients’ own views. Key issues to discuss with patients were identified from the relevant published literature. The form and schedule were piloted on 10 post-surgical patients. Minor modifications were subsequently made and the final interview schedule is shown in Appendix A. Prompts to questions were used to encourage a response. Interview study All interviewing was semi-structured and undertaken on the cardiac unit by one of two interviewers, on the fourth or fifth day post-operatively. Interviews were of approximately 40 minutes duration. Patients’ responses were noted by the interviewer as audio-recording was not feasible within the ward. Data analysis Basic demographic data from the data collection form were entered on to Excel for analysis. Qualitative data were analysed using the five-stage process of familiarisation, identification of themes, indexing, charting and mapping and interpretation [15]. All interview schedules were read initially to establish that they had been completed and to achieve familiarity with the data. Answers were subsequently coded, using a frame developed for the purpose. Coding was undertaken by CH and reviewed by CU. A high degree of concordance was achieved overall, but where there was disagreement, the case was discussed with RC. The research team independently identified key themes by considering responses to individual questions and then establishing clusters of answers. Themes were then discussed by the researchers and consensus reached.
C. Hird et al. / Physiotherapy 90 (2004) 125–131
Findings Characteristics of participants Fifty patients were recruited to the study between April and September 2000 and 34 men and 16 women were interviewed. The age of participants is shown in Table 1 and the mean age of men and women was 63.3 and 62.3 years, respectively. Approximately a quarter of participants (12/42, 29%) were economically active (no information was available in eight cases). Sixty-eight percent of patients (32) were married, 17% (8) widowed and 8.5% (4) single. The majority of patients (33), had undergone coronary artery bypass surgery (33/50; 67%), 14 people had valve surgery and 2 a combination of both. Of the 50 patients, 43 were first admissions, 5 were considered urgent, and 2 were classified as emergency cases. Five participants had previous experience of cardiac rehabilitation. Knowledge of cardiac rehabilitation Forty-five interviewees (90%) indicated that they knew the meaning of cardiac rehabilitation and related the term cardiac to the heart. With few exceptions patients described cardiac rehabilitation with regard to undertaking specific activities rather than a package. Over two-thirds of people interviewed (36) referred directly to exercise/walking but nine related it to relaxation/stress reduction, and four to diet. In fact, 12 respondents defined cardiac rehabilitation solely in terms of exercise/exercising. In most cases a maximum of two elements within the programme were listed. Exceptionally interviewees indicated a range of activities such as ‘breathing exercises, posture, diet, relaxation’ or ‘exercise, discussion and relaxation’. Little mention was made of health education or behaviour modification. Exceptionally patients said ‘Getting priorities right for getting back to good health’; ‘Learning to live the life you should’; ‘Starting over [again] with a lot of problems’. Two patients saw the process as being, in part, prescriptive saying ‘Walking, lifting advice, dos and don’ts’; ‘Helping you get over the operation’; ‘Doing what you are told’.
<46 46–55 56–65 66–70 71–75 >75 Total
Many respondents associated cardiac rehabilitation with recovery from heart surgery as illustrated in the following quotations: ‘Exercises to recover as soon as possible’; ‘Building yourself up after the op’; ‘Coming to terms with a traumatic event and getting back to normal’; ‘Generally getting back on your feet’; ‘Getting fit again after heart op treatment’. Information on cardiac rehabilitation While 70% of participants (35) reported that they had received information on cardiac rehabilitation, 30% (15) said that ‘nobody’ had spoken to them about it. Physiotherapists were cited most often as the main source of information (16 cases), but mention was also made of nurses and health visitors and one patient referred to the ward receptionist. Five interviewees said more than one health professional had spoken to them. Some interviewees were unsure who had given them the information and in one case, following prompting, one patient responded ‘the girl’. Several patients recalled that the information had been given pre-operatively, for instance one said ‘I can’t remember it was the day before surgery’. Seven interviewees said that a doctor had mentioned cardiac rehabilitation to them, and two were able to refer them by name. Attitudes towards attendance Fifty-four percent of patients (27) appeared positive about attending the cardiac rehabilitation programme as indicated in the following: ‘No worries about it, think it would be valuable’; ‘Doesn’t bother me. I think it will be useful to get back to exercising to know how much to do’. A range of views were expressed towards exercise itself as reflected in the comments: ‘I will try to gradually increase walking and housework, but a bit apprehensive.’ ‘I haven’t exercised much in my life and I’m too old to start now!’ ‘I wasn’t so concerned after angioplasty but I’ve been cut up now! I’m not so sure what to expect.’ ‘OK, I’ve been managing fine in the hospital.’
Table 1 Participants’ ages Age (years)
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Men
Women
‘I normally walk five miles a day. I want to get back to that level.’
Total
N
%
N
%
N
%
– 9 10 8 5 2 34
– 26 29 24 15 6 100
1 3 2 6 1 3 16
6 19 12.5 37.5 6 19 100
1 12 12 14 6 5 50
2 24 24 28 12 10 100
‘Not worried. I had a heart attack while jogging, but not really that worried.’ Attitudes towards attending a group session were variable. The majority of interviewees saw benefits accruing from group attendance, and these included being able to speak with other patients and compare progress and performance.
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Interviewees’ comments included: ‘[It should be] a good laugh. There’s motivation from trying to keep up with others’
Approximately half of those interviewed (24) selected exercise, and 11 made references to advice. However, one respondent said ‘I don’t know until I go!’.
‘We can bring each other on—help each other’
Patients’ responses at interview
‘People may ask questions you wouldn’t have thought of, or been too embarrassed to ask’
In the majority of cases patients gave brief answers to the questions posed, even though they were encouraged to take time to respond by the interviewers. For example, when interviewees were asked what they understood by the term cardiac, 33 said ‘the heart’. Few elaborated on their answers, for instance by referring to the function of the heart. Exceptionally, two patients replied ‘the heart and mechanism for pumping blood, i.e. circulation’; ‘circulatory pump that feeds the body with oxygen’. The interviews also revealed that some patients were ill at ease in discussing their health, health problems and treatment. Moreover, responses to the question: ‘Do you think it matters if you attend cardiac rehabilitation or not?’ (asked towards the end of the interview), indicated some ambivalence to the programme, as illustrated below:
‘[There’s] encouragement—putting your oar in—seeing how others cope.’ Few respondents expressed negative views regarding group attendance. Concerns identified were regarding possible embarrassment, ‘falling behind’ and group versus individual needs. Two interviewees stated a preference for not being with other people. Barriers to attendance Approximately one-third of participants (17/50; 34%) cited transport difficulties in attending sessions as reflected in the comments of two participants given below: ‘I would like to go but it’s difficult as it’s a long journey from . . . and don’t want to trouble my wife to bring me. I would definitely like to come.’
‘Initially yes to find out what it is about. After I know what to do I can do it at home.’ ‘Important to do the first one. After that people can make up their own minds.’
‘It would be difficult to get there as my wife works and I’ve been told not to drive just now. In principle, I would go.’
‘Not sure until I go. Probably OK as long as there’s not too much politically correct stuff.’
Another highlighted the costs of public transport:
‘Probably does matter.’
Financially I can’t afford two buses each way. I would be happy to come if transport were provided. Some patients cited both difficulties with transport and family commitments as reflected in the following ‘Difficult fitting in with the rest of the family’s work commitments. Transport is also difficult but I will try to come to first one at least;’ ‘I would rather not because of the travelling—I’m lazy too. I wouldn’t like to leave my elderly mother-in-law for too long.’ In addition, five people referred to how caring responsibilities conflicted with attendance. One man, for example said: ‘It would be difficult. My wife is an invalid and is being looked after by my daughter-in-law at present’. The most important aspects of cardiac rehabilitation When respondents were asked to indicate what was the most important part of cardiac rehabilitation for them (prompts used were exercise, dietary advice, relaxation, education) 11 respondents said that all were important.
‘Might as well go although I do not think it will affect your health either way.’ ‘No! If you follow the advice you are given, it probably doesn’t make much difference.’ ‘Yes, though probably wouldn’t matter if I missed a few.’
Discussion Perceptions of cardiac rehabilitation Although patients indicated an understanding of cardiac rehabilitation, as the interviews progressed it was apparent that their knowledge was limited. Rehabilitation was not seen as a process incorporating a range of elements, aimed at behavioural change. Rather a common perception was of a once a week exercise class. While it is open to question how patients’ perceptions have been shaped, do physiotherapists contribute unwittingly to this perspective, by their own emphasis on exercise?
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Patients viewed surgery as the main reason for cardiac rehabilitation, regarding surgery as a cure for heart disease. Indeed, patients talked of returning to ‘normal’, even though their previous lifestyles as they described them placed them at risk. Although all patients should have received information on cardiac rehabilitation, only 70% reported it being given. This apparent lack of recall may have been due to the timing of the interviews as well as the time at which information had been given in some cases, namely prior to surgery. But even those that did recall it seemed to have little memory of what they had been told. Participants’ responses overall would indicate that people had little baseline knowledge regarding cardiac disease and health procedures. This is in line with other health services research for example, in a recent study patients attending radiological departments for CT, MRI and ultrasound scans had little knowledge of what was involved [16]. Attendance at cardiac rehabilitation While patients saw benefit from social contact related to attendance, they cited problems in travel arrangements and caring responsibilities. While for some these could reflect an ambivalence regarding attendance, for others, they represented a genuine barrier to participation. For example, finding an alternative carer was cited as an attendance issue. Current demographic trends indicate this will be an increasing problem in the future [17]. Information on cardiac rehabilitation Current government policy places an increased emphasis on patient information. This study suggests informationgiving may be more complex than generally recognised by health professionals, although this issue has been well documented by Dixon Woods [18]. One of the key requisites is consistent and regular repetition of the same message. Yet, often related to staff work loads, this may not happen. In this study, few patients claimed to have received any information from medical staff, even though, for example, the American Heart Association, in their 1996 statement on exercise, recommended that ‘the physician must set and support the agenda’, noting that ‘many physicians delegate the task of providing preventative services to other members of the health care team’ [19]. Overall, there seems to be a gap
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between patients’ needs reflected in their own understanding of their pathology and the information strategies of the cardiac rehabilitation team, which may fail to reflect the sketchy knowledge of the general population, and especially of older people. 2. Conclusion One theme which emerged from the study was the divergence in perceptions between health professionals and patients. It appears that, for some patients surgical intervention represents a return to normal, where changes to lifestyle advocated in cardiac rehabilitation programmes will play little or no part. Even the term ‘rehabilitation’ had little real meaning to a number of patients. Traditional tinkering with the methodology of service delivery or untargeted health messages will not convert these patients whose outlook and life circumstances, reinforced by many of years of living, prevent them appreciating fully why life change would be desirable. The outlook of these patients, it could also be argued, is far removed from that of health professionals working in cardiac rehabilitation or cardiac surgery. Key messages • Patients had limited knowledge of heart disease and a narrow view of cardiac rehabilitation. • Patients viewed surgery as the principal event to which to respond. • Patients indicated some ambivalence regarding the importance of the cardiac rehabilitation programme. • Patients cited difficulties with transport and responsibilities as a carer as obstacles for attendance. • Healthcare professionals need to re-examine strategies for information-giving, taking into account the complexities of behavioural change.
Acknowledgements We are grateful to all the patients who participated in the interviews. Thanks are also due to Jacqui Wattie who helped with the interviewing. Ethical approval Grampian Joint Ethical Committee. Funding Grampian University Hospitals NHS Trust (Endowments).
Appendix A. Interview schedule Q1 (a) What do you understand by the term cardiac? (b) What do you understand by the term rehabilitation? (c) Do you know what cardiac rehabilitation is? If YES, please expand.
YES/NO
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Appendix A (Continued ) Q2
Who told you about cardiac rehabilitation? Prompt: Where did you get your information? Doctors/GPs/nursing staff/physiotherapist/health visitor/peers/leaflets? Anyone else? Follow up Have any of the doctors talked about cardiac rehabilitation to you? If YES, who spoke to you? Can you remember their name? What did they say? Q3 (a) Where are you going to attend cardiac rehabilitation? (b) How do you feel about going to cardiac rehabilitation? Prompt: Try to establish emotional concerns. If appropriate use scenarios:‘I was speaking to someone who was quite frightened by the thought of going. Then I spoke to someone who really didn’t give a damn.’ Q4 If you are not going to go to cardiac rehabilitation, why is this? Q5 (a) How do you feel about doing group activities? (b) What do you think the good things might be? Prompt: Camaraderie, discuss symptoms, fun? (c) What do you think the bad things might be? Prompt: Might not be able to keep up. Might look foolish in front of other people. Q6 What, for you, is the most important part of cardiac rehabilitation: exercise, dietary advice, relaxation or education about returning to activities, risk factors and so on? Prompt: Keep this flexible, attempt to get patients’ perception of what aspects they consider important or unimportant. Q7 What do you think about exercise for yourself after your surgery? Have you given it any thought? Q8 Do you think the exercise will be okay, or do you think it will be difficult? Q9 Do you think the class will be enjoyable or a trial? Q10 (a) Do you think it matters if you attend cardiac rehabilitation or not? (b) If not, why not? Q11 (a) Will someone come with you to the class? (b) If YES, do you know how they feel about you coming? Q12 (a) Did you have a heart attack or severe chest pain? (b) Did the person coming with you witness your heart attack?
References [1] Chartered Society of Physiotherapy Effectiveness Bulletin. Cardiac rehabilitation. London: Chartered Society of Physiotherapy; 2000. [2] NHS Centre for Reviews and Dissemination. Effective healthcare bulletin: cardiac rehabilitation. York: University of York; 1998. [3] Bethell HJN. Cardiac rehabilitation in the UK: getting there slowly. Br J Ther Rehabil 1997;4(6):294–5. [4] Bethell JN, Turner SC, Evans JA, Rose L. Cardiac rehabilitation in the United Kingdom. How complete is the provision? J Cardiopulm Rehabil 2001;21:101–10. [5] National Service Framework for Coronary Heart Disease. 2000. http://www.doh.gov.uk/nsf/coronary.htm. [6] SIGN [Scottish Intercollegiate Guidelines Network]. Cardiac rehabilitation. 2001. http://www.sign.ac.uk. [7] Clinical Standards Board for Scotland. Coronary heart disease. Heart attack: secondary prevention. 2001. http://www.clinicalstandards.org/. [8] Lewin RJP, Ingleton R, Newens AJ, Thompson DR. Adherence to cardiac rehabilitation guidelines: a survey of rehabilitation programmes in the United Kingdom. Br Med J 1998;316:1345–55.
YES/NO
YES/NO YES/NO YES/NO
[9] Thompson DR, Bowman GS. An audit of Cardiac Rehabilitation Services in England and Wales. Leeds: NHS Executive; 1995. [10] Nolan M, Nolan J. Cardiac rehabilitation following myocardial infarction. Br J Ther Rehabil 1999;60(3):142–8. [11] Scottish Office Department of Health. Designed to care—renewing the NHS in Scotland. Edinburgh: HMSO; 2000. [12] Scottish Executive Health Department of Health. Our National Health: a plan for action, a plan for change. Edinburgh: The Stationery Office; 2000. [13] Scottish Executive Health Department Patient Focus and Public Involvement. Edinburgh: The Stationery Office; 2001. [14] Chesson RA, Adams L. Professionals’ perceptions of patient involvement. Aberdeen: NHS Grampian; 2002. [15] Pope C. Analysing qualitative data. Br Med J 2000;320:114– 6. [16] Chesson RA, McKenzie GA, Mathers S. What do patients know about ultrasound, CT and MRI? Clin Radiol 2002;57:477– 82. [17] Carers UK. It could be you: a report on the chances of becoming a carer. London: Carers UK; 2001.
C. Hird et al. / Physiotherapy 90 (2004) 125–131 [18] Dixon Woods M. Writing wrongs? An analysis of published discources about the use of patient leaflets. Soc Sci Med 2001;52(9): 1417–32. [19] Fletcher GF, Blair S, Chaitman B, Sivarajan Froelicher E, Froelicher V, et al. Statement on exercise: benefits and recommendations for
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physical activity programs for all Americans: A statement for health professionals by the committee on exercise and cardiac rehabilitation of the council on clinical cardiology. American Heart Assoc 1996;94(4):857–62.
‘Getting back to normal’: patients’ expectations of cardiac rehabilitation Caroline Hird a , Chris Upton a , Rosemary A. Chesson b,∗ b
a Physiotherapy Department, Grampian University Hospitals NHS Trust, Aberdeen, UK Health Services Research Group, Faculty of Health and Social Care, The Robert Gordon University, Garthdee Road, Garthdee, Aberdeen AB10 7QG, UK
Abstract Objectives To identify cardiac patients’ perceptions of their own health and health problems, especially to establish patients’ understanding of the main aims of cardiac rehabilitation; to delineate patients’ perceptions of the role of exercise and diet in rehabilitation; to determine patients’ concerns regarding participation and to examine obstacles to patient involvement in cardiac rehabilitation. Design A qualitative approach was undertaken using a prospective descriptive study design. Patients participated in semi-structured interviews of approximately 40 minutes duration. Responses to questions were coded and answers grouped in clusters and main themes identified through a consensual process. Setting A cardiac unit in an acute teaching hospital in North East Scotland. Participants A convenience sample of 50 patients, 34 women and 16 men, were interviewed. The majority had undergone coronary artery bypass surgery. Main outcome measures Responses to questions as part of an interview schedule developed specifically for the study. Results Many respondents associated cardiac rehabilitation with recovery from surgery reflecting that patients had limited knowledge of cardiac disease. Patients described cardiac rehabilitation in terms of undertaking specific activities, especially exercise. Thirty-six interviewees referred directly to exercise/walking, while nine patients referred to relaxation/stress reduction and four to diet. Seventy percent of participants (35) reported receiving information on cardiac rehabilitation, while 30% (15) said that ‘nobody’ had spoken to them about it. Seventeen interviewees identified transport difficulties and responsibilities as a carer as barriers to attendance. Overall, some patients were ambivalent regarding the need to attend a cardiac rehabilitation programme. Conclusions Study participants had a limited understanding of cardiac rehabilitation and is role in reducing the risk of future cardiac problems. The outlook of the patients interviewed may be far removed from that of health professionals. © 2004 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved. Keywords: Patients; Cardiac rehabilitation; Service planning
Introduction Cardiac rehabilitation Coronary heart disease is the major cause of death in the UK, although, recently mortality has been declining. There is a growing body of evidence indicating that cardiac rehabilitation may lead to lower rates of mortality and morbidity by reducing cardiac risk factors [1]. The aims of a cardiac rehabilitation programme are to ‘facilitate physical, psychological and emotional recovery and enable patients to achieve and maintain better health’ [2]. During the latter half ∗ Corresponding author. Tel.: +44-1224-263040; fax: +44-1224-263042. E-mail address: [email protected] (R.A. Chesson).
of the 20th century there has been a significant increase in the provision of cardiac rehabilitation [3,4]. More recently this has been promoted through both government recommendation, for example in England by the National Service Framework for Coronary Heart Disease in England [5] and in Scotland through the Scottish Intercollegiate Guidelines Network [6] and Clinical Standards Board for Scotland [7] (Quality Improvement Scotland). The majority of cardiac rehabilitation programmes are exercise-based and are delivered in hospital through out-patient departments [1]. It has been increasingly recognised that ‘. . . cardiac rehabilitation is greater than the sum of its parts. It consists of exercise training, educational, psychological and psychosocial interventions’ [1]. Reflecting this, a team approach is advocated [8]. In particular, in recent years, the trend has been towards
0031-9406/$ – see front matter © 2004 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.physio.2004.03.006
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individualised rehabilitation programmes [9]. Yet, although an individualised approach to rehabilitation is advocated, there is a dearth of qualitative research in cardiac rehabilitation [10] and there are few, if any studies, which focus on the patient’s rather than the professional’s perspective. Patient involvement There is a world-wide trend towards patient and community involvement in healthcare decision making. In recent years in the UK, a wide range of initiatives have taken place. In Scotland, key policy documents, such as Designed to Care [11], Our National Health: A Plan for Action, A Plan for Change [12] and Patient Focus and Public Involvement [13] demonstrate the Scottish executive’s commitment to patient involvement. For example, in Our National Health, it is stated that ‘it is no longer good enough to simply do things to people; a modern health care service must do things with the people it serves’ (own emphasis). It is acknowledged that ‘there has to be a culture change in the way service interacts with the people it serves and the way services are delivered’ [12]. Part of the culture change is listening to patients and avoiding making assumptions about what they know and what they want [14]. The study here focuses on the perceptions of people with severe coronary heart disease. The main aims of the project were to determine patients’ expectations of cardiac rehabilitation and explore how these might influence participation in cardiac rehabilitation programmes. Study objectives The main objectives were to: 1. identify patients’ perceptions of their own health and health problem; 2. establish patients’ understanding of the main aims of the programme; 3. delineate perceptions of the role of exercise and diet in rehabilitation; 4. determine patients’ concerns regarding participation, especially with reference to group membership; 5. examine obstacles to patient involvement in the programme.
Study design Setting The study was based on an acute teaching hospital in the North East of Scotland. Grampian University Hospitals NHS Trust offers a phase III cardiac rehabilitation programme to all patients undergoing cardiac surgery. Every patient living within commuting distance of the acute teaching hospital is
invited to attend the programme and is given an appointment to attend 6 weeks post-surgery. Each attendee completes 15 h of rehabilitation including exercise, relaxation and education. There is no provision for patient transport. An earlier audit of the cardiac rehabilitation programme within the Trust had revealed that nearly half all patients who were given an appointment for the first session failed to attend. This prospective descriptive study was undertaken in late 1999 and included a convenience sample of 50 consecutive patients admitted to the cardiac unit. People were eligible for inclusion if they had experienced heart surgery and were eligible for cardiac rehabilitation. The main reason for ineligibility was geographical distance from a trust hospital site. Pilot A form was developed for collecting information on patients’ age, gender, marital status, home location and type of surgery, together with an interview schedule focusing on patients’ own views. Key issues to discuss with patients were identified from the relevant published literature. The form and schedule were piloted on 10 post-surgical patients. Minor modifications were subsequently made and the final interview schedule is shown in Appendix A. Prompts to questions were used to encourage a response. Interview study All interviewing was semi-structured and undertaken on the cardiac unit by one of two interviewers, on the fourth or fifth day post-operatively. Interviews were of approximately 40 minutes duration. Patients’ responses were noted by the interviewer as audio-recording was not feasible within the ward. Data analysis Basic demographic data from the data collection form were entered on to Excel for analysis. Qualitative data were analysed using the five-stage process of familiarisation, identification of themes, indexing, charting and mapping and interpretation [15]. All interview schedules were read initially to establish that they had been completed and to achieve familiarity with the data. Answers were subsequently coded, using a frame developed for the purpose. Coding was undertaken by CH and reviewed by CU. A high degree of concordance was achieved overall, but where there was disagreement, the case was discussed with RC. The research team independently identified key themes by considering responses to individual questions and then establishing clusters of answers. Themes were then discussed by the researchers and consensus reached.
C. Hird et al. / Physiotherapy 90 (2004) 125–131
Findings Characteristics of participants Fifty patients were recruited to the study between April and September 2000 and 34 men and 16 women were interviewed. The age of participants is shown in Table 1 and the mean age of men and women was 63.3 and 62.3 years, respectively. Approximately a quarter of participants (12/42, 29%) were economically active (no information was available in eight cases). Sixty-eight percent of patients (32) were married, 17% (8) widowed and 8.5% (4) single. The majority of patients (33), had undergone coronary artery bypass surgery (33/50; 67%), 14 people had valve surgery and 2 a combination of both. Of the 50 patients, 43 were first admissions, 5 were considered urgent, and 2 were classified as emergency cases. Five participants had previous experience of cardiac rehabilitation. Knowledge of cardiac rehabilitation Forty-five interviewees (90%) indicated that they knew the meaning of cardiac rehabilitation and related the term cardiac to the heart. With few exceptions patients described cardiac rehabilitation with regard to undertaking specific activities rather than a package. Over two-thirds of people interviewed (36) referred directly to exercise/walking but nine related it to relaxation/stress reduction, and four to diet. In fact, 12 respondents defined cardiac rehabilitation solely in terms of exercise/exercising. In most cases a maximum of two elements within the programme were listed. Exceptionally interviewees indicated a range of activities such as ‘breathing exercises, posture, diet, relaxation’ or ‘exercise, discussion and relaxation’. Little mention was made of health education or behaviour modification. Exceptionally patients said ‘Getting priorities right for getting back to good health’; ‘Learning to live the life you should’; ‘Starting over [again] with a lot of problems’. Two patients saw the process as being, in part, prescriptive saying ‘Walking, lifting advice, dos and don’ts’; ‘Helping you get over the operation’; ‘Doing what you are told’.
<46 46–55 56–65 66–70 71–75 >75 Total
Many respondents associated cardiac rehabilitation with recovery from heart surgery as illustrated in the following quotations: ‘Exercises to recover as soon as possible’; ‘Building yourself up after the op’; ‘Coming to terms with a traumatic event and getting back to normal’; ‘Generally getting back on your feet’; ‘Getting fit again after heart op treatment’. Information on cardiac rehabilitation While 70% of participants (35) reported that they had received information on cardiac rehabilitation, 30% (15) said that ‘nobody’ had spoken to them about it. Physiotherapists were cited most often as the main source of information (16 cases), but mention was also made of nurses and health visitors and one patient referred to the ward receptionist. Five interviewees said more than one health professional had spoken to them. Some interviewees were unsure who had given them the information and in one case, following prompting, one patient responded ‘the girl’. Several patients recalled that the information had been given pre-operatively, for instance one said ‘I can’t remember it was the day before surgery’. Seven interviewees said that a doctor had mentioned cardiac rehabilitation to them, and two were able to refer them by name. Attitudes towards attendance Fifty-four percent of patients (27) appeared positive about attending the cardiac rehabilitation programme as indicated in the following: ‘No worries about it, think it would be valuable’; ‘Doesn’t bother me. I think it will be useful to get back to exercising to know how much to do’. A range of views were expressed towards exercise itself as reflected in the comments: ‘I will try to gradually increase walking and housework, but a bit apprehensive.’ ‘I haven’t exercised much in my life and I’m too old to start now!’ ‘I wasn’t so concerned after angioplasty but I’ve been cut up now! I’m not so sure what to expect.’ ‘OK, I’ve been managing fine in the hospital.’
Table 1 Participants’ ages Age (years)
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Men
Women
‘I normally walk five miles a day. I want to get back to that level.’
Total
N
%
N
%
N
%
– 9 10 8 5 2 34
– 26 29 24 15 6 100
1 3 2 6 1 3 16
6 19 12.5 37.5 6 19 100
1 12 12 14 6 5 50
2 24 24 28 12 10 100
‘Not worried. I had a heart attack while jogging, but not really that worried.’ Attitudes towards attending a group session were variable. The majority of interviewees saw benefits accruing from group attendance, and these included being able to speak with other patients and compare progress and performance.
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Interviewees’ comments included: ‘[It should be] a good laugh. There’s motivation from trying to keep up with others’
Approximately half of those interviewed (24) selected exercise, and 11 made references to advice. However, one respondent said ‘I don’t know until I go!’.
‘We can bring each other on—help each other’
Patients’ responses at interview
‘People may ask questions you wouldn’t have thought of, or been too embarrassed to ask’
In the majority of cases patients gave brief answers to the questions posed, even though they were encouraged to take time to respond by the interviewers. For example, when interviewees were asked what they understood by the term cardiac, 33 said ‘the heart’. Few elaborated on their answers, for instance by referring to the function of the heart. Exceptionally, two patients replied ‘the heart and mechanism for pumping blood, i.e. circulation’; ‘circulatory pump that feeds the body with oxygen’. The interviews also revealed that some patients were ill at ease in discussing their health, health problems and treatment. Moreover, responses to the question: ‘Do you think it matters if you attend cardiac rehabilitation or not?’ (asked towards the end of the interview), indicated some ambivalence to the programme, as illustrated below:
‘[There’s] encouragement—putting your oar in—seeing how others cope.’ Few respondents expressed negative views regarding group attendance. Concerns identified were regarding possible embarrassment, ‘falling behind’ and group versus individual needs. Two interviewees stated a preference for not being with other people. Barriers to attendance Approximately one-third of participants (17/50; 34%) cited transport difficulties in attending sessions as reflected in the comments of two participants given below: ‘I would like to go but it’s difficult as it’s a long journey from . . . and don’t want to trouble my wife to bring me. I would definitely like to come.’
‘Initially yes to find out what it is about. After I know what to do I can do it at home.’ ‘Important to do the first one. After that people can make up their own minds.’
‘It would be difficult to get there as my wife works and I’ve been told not to drive just now. In principle, I would go.’
‘Not sure until I go. Probably OK as long as there’s not too much politically correct stuff.’
Another highlighted the costs of public transport:
‘Probably does matter.’
Financially I can’t afford two buses each way. I would be happy to come if transport were provided. Some patients cited both difficulties with transport and family commitments as reflected in the following ‘Difficult fitting in with the rest of the family’s work commitments. Transport is also difficult but I will try to come to first one at least;’ ‘I would rather not because of the travelling—I’m lazy too. I wouldn’t like to leave my elderly mother-in-law for too long.’ In addition, five people referred to how caring responsibilities conflicted with attendance. One man, for example said: ‘It would be difficult. My wife is an invalid and is being looked after by my daughter-in-law at present’. The most important aspects of cardiac rehabilitation When respondents were asked to indicate what was the most important part of cardiac rehabilitation for them (prompts used were exercise, dietary advice, relaxation, education) 11 respondents said that all were important.
‘Might as well go although I do not think it will affect your health either way.’ ‘No! If you follow the advice you are given, it probably doesn’t make much difference.’ ‘Yes, though probably wouldn’t matter if I missed a few.’
Discussion Perceptions of cardiac rehabilitation Although patients indicated an understanding of cardiac rehabilitation, as the interviews progressed it was apparent that their knowledge was limited. Rehabilitation was not seen as a process incorporating a range of elements, aimed at behavioural change. Rather a common perception was of a once a week exercise class. While it is open to question how patients’ perceptions have been shaped, do physiotherapists contribute unwittingly to this perspective, by their own emphasis on exercise?
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Patients viewed surgery as the main reason for cardiac rehabilitation, regarding surgery as a cure for heart disease. Indeed, patients talked of returning to ‘normal’, even though their previous lifestyles as they described them placed them at risk. Although all patients should have received information on cardiac rehabilitation, only 70% reported it being given. This apparent lack of recall may have been due to the timing of the interviews as well as the time at which information had been given in some cases, namely prior to surgery. But even those that did recall it seemed to have little memory of what they had been told. Participants’ responses overall would indicate that people had little baseline knowledge regarding cardiac disease and health procedures. This is in line with other health services research for example, in a recent study patients attending radiological departments for CT, MRI and ultrasound scans had little knowledge of what was involved [16]. Attendance at cardiac rehabilitation While patients saw benefit from social contact related to attendance, they cited problems in travel arrangements and caring responsibilities. While for some these could reflect an ambivalence regarding attendance, for others, they represented a genuine barrier to participation. For example, finding an alternative carer was cited as an attendance issue. Current demographic trends indicate this will be an increasing problem in the future [17]. Information on cardiac rehabilitation Current government policy places an increased emphasis on patient information. This study suggests informationgiving may be more complex than generally recognised by health professionals, although this issue has been well documented by Dixon Woods [18]. One of the key requisites is consistent and regular repetition of the same message. Yet, often related to staff work loads, this may not happen. In this study, few patients claimed to have received any information from medical staff, even though, for example, the American Heart Association, in their 1996 statement on exercise, recommended that ‘the physician must set and support the agenda’, noting that ‘many physicians delegate the task of providing preventative services to other members of the health care team’ [19]. Overall, there seems to be a gap
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between patients’ needs reflected in their own understanding of their pathology and the information strategies of the cardiac rehabilitation team, which may fail to reflect the sketchy knowledge of the general population, and especially of older people. 2. Conclusion One theme which emerged from the study was the divergence in perceptions between health professionals and patients. It appears that, for some patients surgical intervention represents a return to normal, where changes to lifestyle advocated in cardiac rehabilitation programmes will play little or no part. Even the term ‘rehabilitation’ had little real meaning to a number of patients. Traditional tinkering with the methodology of service delivery or untargeted health messages will not convert these patients whose outlook and life circumstances, reinforced by many of years of living, prevent them appreciating fully why life change would be desirable. The outlook of these patients, it could also be argued, is far removed from that of health professionals working in cardiac rehabilitation or cardiac surgery. Key messages • Patients had limited knowledge of heart disease and a narrow view of cardiac rehabilitation. • Patients viewed surgery as the principal event to which to respond. • Patients indicated some ambivalence regarding the importance of the cardiac rehabilitation programme. • Patients cited difficulties with transport and responsibilities as a carer as obstacles for attendance. • Healthcare professionals need to re-examine strategies for information-giving, taking into account the complexities of behavioural change.
Acknowledgements We are grateful to all the patients who participated in the interviews. Thanks are also due to Jacqui Wattie who helped with the interviewing. Ethical approval Grampian Joint Ethical Committee. Funding Grampian University Hospitals NHS Trust (Endowments).
Appendix A. Interview schedule Q1 (a) What do you understand by the term cardiac? (b) What do you understand by the term rehabilitation? (c) Do you know what cardiac rehabilitation is? If YES, please expand.
YES/NO
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Appendix A (Continued ) Q2
Who told you about cardiac rehabilitation? Prompt: Where did you get your information? Doctors/GPs/nursing staff/physiotherapist/health visitor/peers/leaflets? Anyone else? Follow up Have any of the doctors talked about cardiac rehabilitation to you? If YES, who spoke to you? Can you remember their name? What did they say? Q3 (a) Where are you going to attend cardiac rehabilitation? (b) How do you feel about going to cardiac rehabilitation? Prompt: Try to establish emotional concerns. If appropriate use scenarios:‘I was speaking to someone who was quite frightened by the thought of going. Then I spoke to someone who really didn’t give a damn.’ Q4 If you are not going to go to cardiac rehabilitation, why is this? Q5 (a) How do you feel about doing group activities? (b) What do you think the good things might be? Prompt: Camaraderie, discuss symptoms, fun? (c) What do you think the bad things might be? Prompt: Might not be able to keep up. Might look foolish in front of other people. Q6 What, for you, is the most important part of cardiac rehabilitation: exercise, dietary advice, relaxation or education about returning to activities, risk factors and so on? Prompt: Keep this flexible, attempt to get patients’ perception of what aspects they consider important or unimportant. Q7 What do you think about exercise for yourself after your surgery? Have you given it any thought? Q8 Do you think the exercise will be okay, or do you think it will be difficult? Q9 Do you think the class will be enjoyable or a trial? Q10 (a) Do you think it matters if you attend cardiac rehabilitation or not? (b) If not, why not? Q11 (a) Will someone come with you to the class? (b) If YES, do you know how they feel about you coming? Q12 (a) Did you have a heart attack or severe chest pain? (b) Did the person coming with you witness your heart attack?
References [1] Chartered Society of Physiotherapy Effectiveness Bulletin. Cardiac rehabilitation. London: Chartered Society of Physiotherapy; 2000. [2] NHS Centre for Reviews and Dissemination. Effective healthcare bulletin: cardiac rehabilitation. York: University of York; 1998. [3] Bethell HJN. Cardiac rehabilitation in the UK: getting there slowly. Br J Ther Rehabil 1997;4(6):294–5. [4] Bethell JN, Turner SC, Evans JA, Rose L. Cardiac rehabilitation in the United Kingdom. How complete is the provision? J Cardiopulm Rehabil 2001;21:101–10. [5] National Service Framework for Coronary Heart Disease. 2000. http://www.doh.gov.uk/nsf/coronary.htm. [6] SIGN [Scottish Intercollegiate Guidelines Network]. Cardiac rehabilitation. 2001. http://www.sign.ac.uk. [7] Clinical Standards Board for Scotland. Coronary heart disease. Heart attack: secondary prevention. 2001. http://www.clinicalstandards.org/. [8] Lewin RJP, Ingleton R, Newens AJ, Thompson DR. Adherence to cardiac rehabilitation guidelines: a survey of rehabilitation programmes in the United Kingdom. Br Med J 1998;316:1345–55.
YES/NO
YES/NO YES/NO YES/NO
[9] Thompson DR, Bowman GS. An audit of Cardiac Rehabilitation Services in England and Wales. Leeds: NHS Executive; 1995. [10] Nolan M, Nolan J. Cardiac rehabilitation following myocardial infarction. Br J Ther Rehabil 1999;60(3):142–8. [11] Scottish Office Department of Health. Designed to care—renewing the NHS in Scotland. Edinburgh: HMSO; 2000. [12] Scottish Executive Health Department of Health. Our National Health: a plan for action, a plan for change. Edinburgh: The Stationery Office; 2000. [13] Scottish Executive Health Department Patient Focus and Public Involvement. Edinburgh: The Stationery Office; 2001. [14] Chesson RA, Adams L. Professionals’ perceptions of patient involvement. Aberdeen: NHS Grampian; 2002. [15] Pope C. Analysing qualitative data. Br Med J 2000;320:114– 6. [16] Chesson RA, McKenzie GA, Mathers S. What do patients know about ultrasound, CT and MRI? Clin Radiol 2002;57:477– 82. [17] Carers UK. It could be you: a report on the chances of becoming a carer. London: Carers UK; 2001.
C. Hird et al. / Physiotherapy 90 (2004) 125–131 [18] Dixon Woods M. Writing wrongs? An analysis of published discources about the use of patient leaflets. Soc Sci Med 2001;52(9): 1417–32. [19] Fletcher GF, Blair S, Chaitman B, Sivarajan Froelicher E, Froelicher V, et al. Statement on exercise: benefits and recommendations for
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physical activity programs for all Americans: A statement for health professionals by the committee on exercise and cardiac rehabilitation of the council on clinical cardiology. American Heart Assoc 1996;94(4):857–62.