asthmatic patients' views of a comprehensive asthma rehabilitation programme: a three-year...

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Asthmatic patients’ views of a comprehensive asthma rehabilitation programme: a three-year follow-up MARGARETA EMTNER, ANNA HEDIN and GUNNEMAR STÅLENHEIM Departments of Lung Medicine and Physiotherapy, Uppsala University, Sweden. ABSTRACT Background and Purpose. Twenty-one asthmatic patients aged 27–59 years, with mild to moderate asthma, participated in a 10-week group rehabilitation pro- gramme covering physical training and theoretical and practical education in medication, self-management strategies and physiotherapy. This study was undertaken retrospectively to investigate (1) the patients’ reasons for joining the programme, (2) their experiences of the programme, and (3) their ways of coping with disease-related problems before joining and three years after completion of the programme. Methods. Patients were followed up every six months for three years and were interviewed after the three years. The semi-structured interviews were tape-recorded, transcribed and revised. Results. The life-situation of most of the patients before the 10-week programme was characterized by helplessness at exacer- bations, anxiety/insecurity about medications and their side-effects, and/or concern about future health. More than half of the subjects felt physical limitations in daily life or when exercising. All wished to increase their knowledge of asthma by joining the programme, but only nine patients expected asthma improvement. The experience that they were able to carry out physical exercise to a maximal intensity and that physical training improved their asthma, with increased knowledge about medications were mentioned by all as the most valuable effects of the programme. Moreover, most patients emphasized their increased abil- ity in self-management strategies (stress reduction and breathing technique). The increased knowledge and improved practical skills contributed to a better life-situation after the reha- bilitation. After the three years virtually all the patients’ lives were characterized by improved self-management, increased physical activity and a sense of security. Almost half of them expressed a wish to take responsibility for the disease. Conclusions. In addition to medical therapy and education, physical training and techniques for relaxation and breath- ing should form part of the treatment of asthma. Key words: adult, bronchial asthma, patient education, patient views, physical therapy, self-management of asthma. Physiotherapy Research International, 3(3), 1998 © Whurr Publishers Ltd 175

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Page 1: Asthmatic patients' views of a comprehensive asthma rehabilitation programme: a three-year follow-up

Asthmatic patients’ views of acomprehensive asthma rehabilitationprogramme: a three-year follow-up

MARGARETA EMTNER, ANNA HEDIN and GUNNEMAR STÅLENHEIMDepartments of Lung Medicine and Physiotherapy, Uppsala University, Sweden.

ABSTRACT Background and Purpose. Twenty-one asthmatic patients aged 27–59years, with mild to moderate asthma, participated in a 10-week group rehabilitation pro-gramme covering physical training and theoretical and practical education in medication,self-management strategies and physiotherapy. This study was undertaken retrospectively toinvestigate (1) the patients’ reasons for joining the programme, (2) their experiences of theprogramme, and (3) their ways of coping with disease-related problems before joining andthree years after completion of the programme. Methods. Patients were followed up everysix months for three years and were interviewed after the three years. The semi-structuredinterviews were tape-recorded, transcribed and revised. Results. The life-situation of mostof the patients before the 10-week programme was characterized by helplessness at exacer-bations, anxiety/insecurity about medications and their side-effects, and/or concern aboutfuture health. More than half of the subjects felt physical limitations in daily life or whenexercising. All wished to increase their knowledge of asthma by joining the programme, butonly nine patients expected asthma improvement. The experience that they were able tocarry out physical exercise to a maximal intensity and that physical training improved theirasthma, with increased knowledge about medications were mentioned by all as the mostvaluable effects of the programme. Moreover, most patients emphasized their increased abil-ity in self-management strategies (stress reduction and breathing technique). The increasedknowledge and improved practical skills contributed to a better life-situation after the reha-bilitation. After the three years virtually all the patients’ lives were characterized byimproved self-management, increased physical activity and a sense of security. Almost halfof them expressed a wish to take responsibility for the disease. Conclusions. In addition tomedical therapy and education, physical training and techniques for relaxation and breath-ing should form part of the treatment of asthma.

Key words: adult, bronchial asthma, patient education, patient views, physicaltherapy, self-management of asthma.

Physiotherapy Research International, 3(3), 1998 © Whurr Publishers Ltd 175

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INTRODUCTION

Asthma is a common, chronic inflammatory disease affecting 7–8% of the popula-tion in Sweden (Lundbäck, 1993). Patients with asthma suffer from breathlessness,tightness of the chest, wheezing and coughing. The disease is characterized by undueresponsiveness to stimuli that are normally innocuous, for example exercise, stress,cold weather, smoking, pollen, infections, odours and pets. This often prevents thepersons from participating in social activities such as visits to cinemas, theatres andrestaurants, and from taking part in physical activities.

In attempts to minimize the impact of asthma on daily life, substantial researchon the management of asthma has been carried out in the last decade. Besides lower-ing the costs to the healthcare system (Windsor et al., 1990; Bolton et al., 1991),several educational programmes have been found to be effective in improvingasthma management skills (Beasley et al., 1989; Ringsberg et al., 1990; Yoon et al.,1993), reducing the use of emergency healthcare services (Ringsberg et al., 1990;Bolton et al., 1991; Yoon et al., 1993; Lahdensuo et al., 1996), and improving thequality of life (Ringsberg et al., 1990; Lahdensuo et al., 1996). Others have failed toimprove self-management skills (Hilton et al., 1986; Drummond et al., 1994; Hilton,et al., 1986) or to retain effects on a long-term basis (Bolton et al., 1991).

Most programmes have followed a curriculum and have included instructions ininhaler techniques and in how to adjust asthma medications according to the dailypeak flow variability. In some programmes basic anatomy, physiology, pathophysiol-ogy and side-effects of treatment have been added. The programmes have relied on amore extensive interaction between patients and healthcare professionals than isusually possible during visits to a clinic.

Only a few programmes (Ringsberg et al., 1990; Emtner et al., 1996) haveincluded physical training, although it is well known that most people with asthmaare afraid of physical training, as they often experience asthma when exercising(Bundgaard, 1985). In addition, both adults and children with asthma are less fitthan their peers (Ludwick et al., 1985; Orenstein et al., 1985; Clark & Cochrane,1988). In recent studies, however, aerobic training in asthmatic subjects has beenfound to result in improvements in the cardiovascular condition (Emtner et al.,1996), respiratory function (Emtner et al., 1996), self-esteem and confidence(Robinson et al., 1992), and to reduce breathlessness (Cochrane & Clark, 1990),and the risk of chest infection (Karper & Boschen, 1993). Thus it seems that physi-cal training should be beneficial to asthmatic patients.

In addition to all the research on the effects of asthma management, nationalguidelines and an international consensus report on the diagnosis and treatment ofasthma (National Heart, 1992) have been developed and disseminated. The guide-lines have a poor inclusion of the need for exercise and have mainly focused on cog-nitive knowledge on topics chosen by the health professionals. If these choices donot match patients’ own needs for knowledge, their motivation for change mightdiminish. Few attempts have been made to elicit patients’ opinions on what they

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need in order to live a normal life despite their disease (Bailey et al., 1987), or theiractual experience of having asthma, and the effect of having undergone a rehabilita-tion programme on their lives.

The aims of this study were, firstly, to explore the reasons why asthmatic patientsjoined a recommended rehabilitation programme; secondly, their experiences of thisprogramme, and, thirdly, their ability to cope with disease-related problems beforeand three years after the rehabilitation period.

This study is part of a more comprehensive longitudinal investigation focusing onthe effects of a group-based rehabilitation programme with the usual components ofcognitive knowledge and self-management strategies but with the addition of physi-cal training and physiotherapy. The physiological effects of this rehabilitation pro-gramme after 10 weeks (Emtner et al., 1996; Emtner et al., in press (a)) and afterthree years (Emtner et al., in press (b)) have been reported earlier. A study on adher-ence to the physical training will be reported elsewhere.

METHOD

Patients

The sample comprised 21 of 32 adult asthmatic patients recruited consecutively fromthe Lung and Allergy Clinic, Uppsala, Sweden. They fulfilled the following criteria:

• Chronic well-controlled asthma (according to ATS) (Standards, 1962) of a mildor moderate degree of severity.

• FEV1 % >75 after inhalation of a beta-2 agonist.• No concomitant disease.

The patients had all volunteered to participate in a 10-week rehabilitation programmeand been followed up for three years. The 21 were selected according to degree ofadherence to regular (minimum twice a week) high-intensity physical training duringthe three-year period. Ten of these patients adhered to the training whereas 11 didnot. According to the subjects most of them lived physically inactive lives before therehabilitation period. However, six subjects were interested in physical training andhad unsuccessfully tried to exercise for at least one year before the rehabilitation.

All subjects gave their informed consent to participate in the study, which wasapproved by the Ethics Committee of the Medical Faculty of Uppsala University.

Rehabilitation programme

The patients took part in a 10-week rehabilitation programme (Emtner et al., inpress (a)) and were followed up for three years (Figure 1) (Emtner et al., in press(b)). During the first two weeks the patients attended the hospital every workday(6 h/day) for physical training, education and tests as outpatients (Period 1).

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FIGURE 1: The rehabilitation programme.

During the following eight weeks they carried out physical training twice a weekeither on their own or in specially designed training groups for asthmatic subjectsarranged in the evenings by the local patient organization of the Heart and LungPatient National Association (Period 2). The rehabilitation programme and follow-up tests more or less covered all six parts of an international asthma managementplan (National Heart, 1992), and the programme also included physical training andphysiotherapy. For follow-up tests, see Table 1.

Period 1

These first two weeks of the rehabilitation programme comprised:

• A daily 45-minute long training session either on land or in water. The trainingsession started with a warming-up period (15 min) with arm and leg exercises,walking and low-intensity jogging. The exercise continued with interval trainingcomprising five 2-minute periods of intensive exercise (80–100% average maxi-mal intensity) separated by 1.5-minute periods of low-intensity exercise (total, 16minutes). These periods of interval training consisted of varied repetitive large-muscle dynamic exercises. A cooling-down period (7 minutes) and stretchingexercises (10 minutes) completed the session. The pulse rate was measured,either by a physiotherapist, a nurse or the patient, before the training, after thewarming-up, after each interval, and immediately after the cooling-down period.Subjects also estimated their sense of exertion according to a Borg scale (Borg,1982) between 0–10, with 10 as the highest degree of exertion.

• Practical sessions in techniques for inhalation, breathing, relaxation and preven-tion of stress incontinence.

• Theoretical lessons in anatomy, physiology and pathophysiology; medication, i.e.pharmacology of the asthma drugs, the way in which these drugs affect the lung,the rationale for their use, and how to vary dosages according to need; monitor-ing of peak expiratory flow rate (PEF); asthma trigger identification and control;stress management; and handling of exacerbations.

Besides these three parts, which lasted five hours a day on average, tests (see Table 1)taking an average of one hour a day were performed.

Teaching methods were based on principles for adult learning (Wlodkowski,1985; Merriam, 1991), focusing on the patients’ own need for knowledge as well asbuilding on their prior learning and giving ample time for interaction between the

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participants and teacher in the form of group discussions and model learning. Thesame physiotherapist was the organizer and teacher/leader in all practical sessionswhile the theoretical sessions were shared between the physiotherapist, a physician,and a nurse. During the first teaching session, the patients were introduced to thesystem of group discussion; they were asked to talk about their asthma history andtheir needs, expectations and goals; they were also informed about asthma in generaland about the goal of the rehabilitation programme, i.e. to help the patients acceptthe diagnosis and gain the knowledge and skill to enable them to manage theirasthma in daily life, and to motivate actions leading to less restricted lives.

During the subsequent sessions theoretical themes were integrated with trainingin techniques of breathing, inhalation, relaxation and physical training. The educa-tion was repeated according to the needs of patients, and the practical skills werechecked by the physiotherapist. Information pamphlets produced by drug companiesand containing facts about asthma and asthma treatment were distributed to thesubjects. Moreover, written individual instructions covering relaxation exerciseswere provided in order to facilitate practice at home.

Period 2

During the following eight weeks, the patients continued physical training twice aweek. A training log was kept by each subject to record the frequency of trainingand to note the estimated intensity of training using a 10-grade Borg scale (Borg,1982). Training was defined as physical activity carried out for at least 30 minutes.The education during this time consisted of spontaneous discussions with the leadersand with other asthmatic patients at the training sessions and at the 10-week test.Thus, opportunities were given to discuss recent asthma experiences, the use of thepeak flow meter, adherence to medications, and trigger control. Participants

Asthmatic patients’ views of rehabilitation 179

TABLE 1: Tests performed in group sessions six-monthly during the first two years and once at theend of the three years

Year 1 Year 2 Year 30.5 1 1.5 2

(N = 21) (N = 21) (N = 21) (N = 20) (N = 20)

12-minute walking test X X X X XCycle ergonometer test X X X X XTraining log X X X X XQuestionnaires* X X X X XDiaries X X X X XSpirometry X X XMetacholine X X XInterview X

* The questionnaires consisted of study-specific questions about the influence of asthma on health,everyday life and activities (see also Table 8).

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received positive feedback and encouragement for continued use of self-managementskills. At the 10-week follow-up test they were given personal guidance in how tocontinue physical training during the following three years (Period 3).

Period 3

During these three years, tests (see Table 1 above) were performed every six months(except at 2.5 years) in the original groups of patients. During these meetings thepatients had the opportunity to ask questions and discuss any problems with thephysiotherapist or doctor, and share concerns about asthma with the other patients.On every test occasion the training log kept by each subject was delivered.

Research design

A qualitative, descriptive study design was used as the aim was to investigate andunderstand the patients’ own actual experiences before, during and after their partic-ipation in the comprehensive rehabilitation programme (Morse & Field, 1995). Forpractical reasons, however, a retrospective research design was used. The outcome ofprospective and retrospective studies have not been shown to be significantly differ-ent (Levinson et al., 1990; Skeff et al., 1992). Quantitative data, i.e. data for physio-logical parameters and from questionnaires based on visual analogue scales (VAS, 10cm) (Emtner et al., 1998a; 1998b) will be presented in the results to provide triangu-lation and thus increase the credibility and dependability of the results (Marshall &Rossman, 1995).

Procedure

The patients were interviewed after three years and reported retrospectively about theireveryday lives, their quality of life and their experiences during the 10-week rehabilita-tion period and the three-year follow-up. To stimulate recall of the rehabilitationperiod, photographs from different parts of this period were used (Boalt Boethius, 1983).A semi-structured interview guide was developed (Table 2). Questions could be askedin any order and follow-up probe questions (e.g. Can you tell me more about that? Canyou give me an example?) were used to further clarify the dimensions and meaning of thepatients’ experiences. The interviews lasted until both the interviewer and intervieweewere satisfied that there was no more to discuss. The actual interview time was 40–70minutes. Interviews were all conducted at the hospital and were tape-recorded. Theinterview guide was sent to the patients a week before the interview to give them timeto review the questions and think about their responses.

Analysis of interview data

The interviews were transcribed by a nurse in the department, and when difficultiesin the transcription were encountered the patients were contacted for clarification

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by the nurse or the researcher. The analysis started with several readings before thematerial was coded by the interviewer and a second reader, who was not involved inthe study but accquainted with the research area. The first coding sorted outcommon elements (categories) in background data, the patients’ daily life situationprior to the rehabilitation, their hopes and desires when joining the rehabilitationprogramme, and their experiences of the rehabilitation period. In the next stage thecategories were clustered into themes. Decision rules were created to ensure that thethemes were comprehensive, meaningful and independent (Patton, 1990). Theinter-rater reliability of the themes was tested by three other people not involved inthe study and the reliability ranged from 77% to 100%, with an average of 90%agreement.

RESULTS

Study group

The median age of the study group was 33 years (range 23–55 years) at the start, andon average, subjects had had asthma for 25 years (range 5–34 years), 13 of them sincechildhood. There were 11 women and 10 men, 18 were married or living with anotherperson, and nine had undertaken higher education (more than 12 years). Seventeensubjects had an ordinary physical condition and four a low physical condition accord-ing to Nordenfelt (Nordenfelt et al., 1985). Spirometric values, level of medication,and number of subjects with exercise-induced asthma (EIA) are shown in Table 3.

Interview data

A number of main themes emerged from the interviews concerning the five princi-pal topics (see Table 4 and Figure 2). These themes, however, did not differ betweenthe patients who had adhered/not adhered to regular high-intensity physical trainingduring three years.

Asthmatic patients’ views of rehabilitation 181

TABLE 2: Interview guide

What impact did the asthma disease have on your daily life before the rehabilitation period?What was your reason for joining the rehabilitation programme?What were your hopes for the rehabilitation?How did you find the rehabilitation period:

the first two weeks, Period 1?the following eight weeks, Period 2?the three-year follow-up period?

What impact does the asthma disease have on your daily life now after the three years?Is there anything else you would like to tell me about the rehabilitation period?What advice would you give a person with asthma?

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Emtner, Hedin and Stalenheim182

TABLE 3: Data (mean, SD) obtained before and after the 10-week rehabilitation period, and afterthree years

Before rehabilitation After 10 weeks Three years(N = 21) (N = 21) after rehabilitation

(N = 20*)

FEV1 (litre) 2.9 (0.7) 3.0 (0.9) 2.9 (0.8)FEV1 (% predicted) 75 (13) 76 (16) 75 (15)FVC (litre) 4.4 (1) 4.4 (1.1) 4.3 (1)Medication**low/medium/high 4/9/8 4/9/8 6/8/6EIA*** 6 2† 1†

*One woman did not participate in the three-year follow-up measurements due to lack of interest.**Medication, number of patients having: low = inhaled corticosteroids ≤400 µg per day; medium =inhaled corticosteroids >400 µg per day and in some cases long-term β2 stimulants; high = same asfor medium level plus oral corticosteroids and/or oral β2 agonists and/or theophylline.***EIA = Exercise-induced asthma; number of patients have a >10% fall in peak expiratory flow(PEF) after the cycle test.†p < 0.05, compared to the value ‘before rehabilitation’.

Topic 1: Daily life before the rehabilitation period

Helplessness

A feeling of helplessness was expressed by 81% of the respondents. The asthmaticattacks were sudden and unexpected and they had no other way of coping with themother than to go to hospital. They felt that living with this uncertainty wasinevitable, as they had no means of preventing or alleviating the symptoms on theirown. The following are examples of patients’ comments:

I had had asthma symptoms frequently during the last year … the medications did not help me … I didnot know what to do. (Female, 42 years)

An asthma attack could occur at any time … I could not handle it … I felt distressed. (Male, 57 years)

I could not control my asthma … I used my medications until they did not help me any more … then Iwent to the hospital. (Male, 44 years)

FIGURE 2: Patients’ views after three years on life before, during and after the rehabilitation programme.

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Asthmatic patients’ views of rehabilitation 183

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Anxiety/uncertainty

Anxiety was reported by 71% of respondents. The fear of breathlessness and thefighting for breath was described as especially worrying. Besides anxiety about steroidmedication and its possible side-effects, the patients felt uncertainty about theirfuture health; would the disease lead to serious disability and dependence on helpfrom others on a long-term basis (years)? In addition, patients experienced anxietyand uncertainty due to unpredictable exacerbations and remissions of the disease, andthey were unable to separate breathlessness due to exertion from breathlessnesscaused by bronchoconstriction:

I was terribly scared by my asthma attacks and symptoms … I thought with fear of the future … buttried to repress my feelings. (Male, 36 years)

During the nights it could be hard to breathe … this could continue for two weeks … of course I wasworried. (Female, 44 years)

I had medications everywhere, in my pockets, at work, in the car, in my bag … if I happened to forgetthe medications I became worried and got asthma symptoms immediately. (Female, 48 years)

Physical inactivity

Almost 70% of the respondents expressed anxiety in connection with physical activ-ity or physical training. Those who lived an inactive life were apprehensive aboutany physical exertion and stated that there were limitations even in their ordinarydaily activities. Some of them had accepted the idea of living a sedentary life. Thosewho were more physically active had difficulties in exercising even if they knew thatpremedication and a long warming-up period would be beneficial for them:

I did not have energy enough to walk … I had gradually accepted this. (Female, 44 years)

I knew that I would get asthma symptoms as soon as I started to be active, so I kept away from it.(Male, 44 years)

I was deconditioned … did not dare to exercise … did not know how much I could exercise … or if itwas dangerous. (Male, 57 years)

Topic 2: Reasons, hopes and desires when joining the rehabilitation programme

All subjects wanted to learn something, but 12 subjects (58%) had only vague ideasof what they wanted to learn, and absolutely no expectations of improving theirasthma status. Ten of these had a lower education educational level:

I wanted to learn more, but I didn’t think that I would be able to handle my disease in a better way.(Female, 27 years)

The rehabilitation sounded interesting and I didn’t expect to lose anything by joining it. (Female, 44 years)I didn’t expect anything. (Male, 26 years)

In contrast, the remaining nine subjects (42%) of whom seven had a higher education

Emtner, Hedin and Stalenheim184

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expressed clear expectations of what they wanted to learn/achieve by joining therehabilitation programme. One desire was to be able to take control of theirdisease:

As I knew so little, I wanted to learn more about asthma. I know that the lungs deteriorate withincreasing age so I wanted to find out what I could do preventively. I also wanted to be prepared if Ishould become worse. (Male, 36 years)

I wanted to be able to handle my disease in a better way. I was deconditioned, afraid of steroids anddidn’t know what to do when I got asthma symptoms. Joining the rehabilitation would give me a possi-bility to ask questions and learn more. (Male, 57 years)

Topic 3: Perceived gains from the rehabilitation

Physical training

During the first two weeks, Period 1, everyone had exercised to an almost maximalintensity level — 90–100% of their maximal heart rate, without getting asthma symp-toms. During the 10 weeks, periods 1 and 2, they had learnt and experienced the factthat with premedication and a long warming-up period there were no limitations tophysical training. They had felt secure during the training, as it took place at the hos-pital and in the presence of physiotherapists. Both during the first 10 weeks and duringthe three-year follow-up period they reported that their improved physical conditionwas actually good for their health and only affected their disease in a positive way.Table 5 shows the most common perceived benefits from the physical training.

I was favourably shocked that I was able to manage the high-intensity physical training. I began to realizethat I too could do this. My whole life I had learned that I should not be physically active. (Male, 44 years)

The more my physical condition improved the better my asthma status became. (Male, 29 years)

Having a good physical condition results in a better health status. I am convinced that the improvedasthma status is due to the increased physical training. (Male, 29 years)

Now I dared to test how intensively I was able to exercise. There was help available if I should need it.(Female, 44 years)

To premedicate and start slowly were new to me. It was an incredible experience! (Female, 32 years)

Asthmatic patients’ views of rehabilitation 185

TABLE 5: Perceived gains from physical training

Expressed gains from physical training Number of patients Frequency (%)(N = 21)

Ability to exercise to maximal intensity level 21 100Improved asthma status after physical training 19 90Sense of security in exercising at the hospital 13 62Benefits of premedication and a long warm-upperiod before exercise 12 57

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These subjective experiences were supported by physiological measurements. Thecardiovascular condition, measured by the six-minute cycle test and 12-minutewalking test, had improved significantly during the 10-week rehabilitation periodand remained improved during the three years of follow-up (Emtner et al., 1998a;1998b). The number of subjects having EIA decreased throughout the three years(see Table 3 above). However, although the respiratory parameters studied wereunchanged both at the 10-week and at the three-year test, the lives of these patientshad certainly changed (Table 3 above).

Theoretical knowledge of medicines and the disease

All patients reported that they had learnt how the medications affect the body, howto medicate, and how to vary the dosages, for example during exacerbations or infec-tions. Moreover, they had increased their knowledge about the asthma disease, trig-ger factors and the value of PEF monitoring. The most important gains mentionedare presented in Table 6.

Now I understand why I should take the medications, and so I don’t forget them. (Male, 29 years)

When I saw the picture of the inflamed bronchi I realized that asthma is a chronic inflammatory disease.(Male, 29 years)

I hardly use my peak flow meter any more, as I am able to feel nowadays when I need to increase themedication dose. (Male, 57 years)

Self-management techniques

Besides the patients’ increased ability and experience of physical training, theyvalued highly their increased knowledge and ability in self-management techniques.Patients used their practical skills in controlling and treating their asthma. Insightand knowledge of stress management and relaxation were reported to be of great

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TABLE 6: Categories of theoretical knowledge considered by patients to be of great importance formanaging their asthma

Theoretical knowledge Number of patients (N = 21) Frequency (%)

Medications* 21 100Asthma disease** 17 81PEF monitoring 3 14

PEF = Peak expiratory flow.*Pharmacology, effect of the disease, side-effects, and how to handle and vary medicines duringinfections and exacerbations.**Including anatomy, physiology, pathophysiology and trigger factors.

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help in coping with symptoms in their daily lives. Other skills appreciated weretechniques for breathing, inhalation and coughing, as presented in Table 7.

There were no clear relationship between subjects with a higher education andability in self-management techniques:

When I begin to feel asthma symptoms I can sit down and relax. A few times I have been able to curean asthma attack. (Male, 29 years)

When I experience asthma symptoms I can calm down by using a deep and slow breathing technique.(Male, 44 years)

I appreciated learning the technique of inhalation … and of learning how little of the drug one receives ifit is done wrong. (Male, 26 years)

It is necessary to know about an effective technique for coughing during infections. (Male, 36 years)

Topic 4. Perceptions of the teaching process

The patients underlined the importance of being part of a small group. They valuedseeing other asthmatic people, discussing mutual problems and supporting oneanother, and found this to be a contributing factor to their improved asthma control.The mixture of the theoretical with the more practical parts of the programmehelped them to gain a better understanding, as well as an ability to deal with theirdisease (see Table 4 above):

The support from the group was important … there was always someone to discuss problems with, aswe had the same experiences. (Female, 27 years)

If I were just taught theoretical facts without practising anything myself, I would not change my behav-iour. Only by practising does one learn. (Female, 44 years)

The follow-up tests were important as a stimulus for continued physical training, and there were also oppor-tunities to discuss asthma concerns with the group members or the healthcare professional. (Male, 57 years)

Topic 5: Daily life three years after the rehabilitation period

All patients reported that they had improved their asthma status during the three-year period. They had achieved an ability to cope with the disease themselves andhad become competent in doing so. They could adjust medical treatment preven-tively, avoid trigger factors, and/or relax to avoid exacerbations. They knew how to

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TABLE 7: Self-management techniques considered by patients to be of great importance inmanaging their asthma

Self-management technique Number of patients (N = 21) Frequency (%)

Relaxation 18 85Breathing 11 52Inhalation 7 33Coughing 4 17

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be physically active and they had no fear of physical exertion. Moreover, they hadincreased their level of physical activity and become more active in daily life. Theystated that they felt in control of the disease, felt secure, and no longer experiencedthe disease as a limiting factor. They expressed a solid wish to take responsibility formanaging their disease themselves (see Table 4 above):

The rehabilitation has really given me a preparedness for how I should live and cope with my asthma.The experience of physical training has taught me that if I exercise regularly I will feel better. Today Iwould not stay passively in bed if my asthma should worsen. (Female, 27 years)

I feel no limitations in my daily life … I am in control of the disease … I don’t even think of myself asan asthmatic person. (Male, 57 years)

I have a different attitude toward my disease today. It is psychologically important not to give up,medicate and just hope to get better. After this rehabilitation period I feel mentally stronger. I am ableto manage my situation and be responsible for it. (Male, 29 years)

Quantitative data from the questionnaires corroborated the reported improvementsin daily life and activities (Table 8). Moreover, the number of emergency visits haddecreased from 28 the year before rehabilitation to 15 the year after, and at thethree-year test the total number of emergency room visits during the three years wasonly 29.

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TABLE 8: Influence of asthma on everyday life and activities*

Questionnaire questions Start (N = 21) Three-year test(N = 21)

How does your asthma disease influence your daily life? 6.1 9.5**How do you manage to go for a walk? 9.5 9.8**How do you manage to go swimming? 7.5 9.5**How do you manage to jog? 3.6 6.5**How do you manage to go cycling? 6.8 9.6**How do you manage to do gymnastics? 5.4 7.7**

*Median VAS ratings (1 = poor function, 10 = good function) at the start and after three years.**p < 0.05 (Wilcoxon signed ranks test).

DISCUSSION

Comparison with other asthma programmes

This rehabilitation programme differed from others by including a substantial sec-tion of physical training. Besides having a significant effect on cardiovascular condi-tion, asthma symptoms and EIA (Emtner et al., 1996; Emtner et al., 1998a; 1998b),this training was greatly valued by the patients. All the patients, even those who hadhad previous experience of physical training, underlined the importance of this

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particular training, not only to improve their physical condition but also to increasetheir ability to live physically active lives. The opportunity given for discovering bythemselves that a good physical condition influenced their asthma in a positive wayseemed to be very important. They had also been encouraged by staff to try othersports on their own, and most of them had done so with good results. The six sub-jects who had already tried to exercise prior to the rehabilitation stated that theylearnt of the beneficial effects of taking β2 agonists before exercise and of having along warm-up period. This result might indicate that even those who are physicallyactive need help in exercising in a correct way.

A highly valued aspect of the rehabilitation period concerned the increased skillsof the patients in relaxation and breathing, which helped them to calm down andalleviate their asthma symptoms (Partridge, 1995). Patients emphasized that having achoice of different means of preventing or alleviating symptoms helped them tomanage their disease. The confidence and mental preparedness which our patientsachieved by learning self-management skills and the rationale for using them, led to abetter ability to master problems, evaluate effects and alter their behaviour. Thisresult is well in line with the theory of self-regulation (Leventhal & Cameron, 1987).Recent reviews on asthma schools report more positive results from behavioural thanfrom cognitive techniques (Partridge, 1995). This study supports this view.

Few patients mentioned peak expiratory flow (PEF) monitoring during the inter-views. This is somewhat surprising, as many asthma programmes claim that PEFmonitoring is a highway to success in self-management (Lahdensuo et al., 1996).This study suggests that the PEF monitoring technique might be a good startingdevice for patients in learning how to cope with symptoms, but ought not beregarded as the sole means of self-management.

Social impact of asthma on daily life

The interviews underlined how great a social impact an asthma disease can haveon daily life, a result supported by other studies on asthma (Fallsberg, 1991;Scherman, 1994). In addition, Partridge (1995) reported in a recent review articlethat 39% of those with asthma felt that having the disease had a great deal, orquite a lot, of influence on their everyday life, with a further 35% considering thatit had moderate influence.

Although more than half of the subjects (12 patients) had few expectations ofthe rehabilitation period, most of them benefited. As in many patients with chronicdiseases, they had accepted their disabilities (Burdon et al., 1982) and felt that therewere no possibilities for them to manage their disease on their own. However, bylearning about the disease and self-management strategies, and being encouraged toassume responsibility, they learnt how to control their asthma and were willing totake the responsibility themselves. Though there was a relationship between expec-tation and educational level there was no clear relationship between educationallevel and willingness to take responsibility. Almost no feelings of helplessness orinsecurity were expressed. Moreover, these improvements were stable and were

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evident as long as three years after the rehabilitation period. Thus it should be notedthat even with a long experience of the disease, on average 25 years (13 subjects hadhad asthma since childhood), good use was still made of the programme. It seemsclear that there is a great need for rehabilitation and education among people withmild to moderate asthma.

The educational process

In comparison with other programmes, this one was distinguished by having anactive, problem-oriented approach to teaching. The education took its point ofdeparture from the patients’ own needs and desires and gave ample opportunities fordiscussion and asking questions in groups. Thus, theoretical and practical knowledgebecame mingled and several conditions favoured in-depth learning (Gibbs, 1992).The regular follow-ups over a long period also gave the patients opportunities forfeedback and repetition. These aspects of teaching, especially the group interaction,were greatly valued by the patients and may also have augmented the positive effectof the rehabilitation. Group education has previously been found to have advantagesin terms of emotional support and reduction of feelings of loneliness and stigmatiza-tion (Bailey et al., 1987; Yoon et al., 1993) and has been shown to be more effectivethan individual education (Wilson et al., 1993).

Most education programmes on asthma have comprised 3–23 hours for tuition,and have been found to be cost-effective during a relatively short follow-up period,seldom exceeding one year. This programme covered 50 hours during the first periodof two weeks and about one hour every six months during the following three yearsand was thus more expensive, but the improvements in our patients have been sub-stantial and stable over time. We have no way of judging whether the improvementsmay be attributed to the first supervised intensive period of 50 hours or whether theyare partly due to the six-monthly follow-ups. According to the self-regulation theory(Sluijs & Knibbe, 1991), follow-ups might have a good effect on long-termcompliance. Further comparative studies should be made to ascertain the minimumeffective number of hours required to achieve the same effects.

The generalizability of the results of this study is limited by the small groupdesign and the fact that the interviews were conducted only once — and retrospec-tively — after three years, which might diminish recall in spite of the stimulatedrecall technique used. However, as previously stated, the outcomes of prespectiveand retrospective studies have not shown to be significantly different (Levinson etal., 1990; Skeff et al., 1992). The credibility and applicability of the results arestrengthened by the longitudinal design and the consistent focus on central themes.

CONCLUSION

The results indicate that patients joined the rehabilitation programme in order tolearn more about asthma. The majority had vague expectations, however, and didnot expect their asthma to improve. The most important subjective gains were the

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positive experience of physical training, the improved skill in self-management tech-niques (techniques for stress reduction and breathing) and problem-solving, the the-oretical understanding of the rationale for medications, and the increased sense ofsecurity. Prior to the rehabilitation period the patients expressed feelings of helpless-ness and uncertainty, were physically inactive and were unable to control theirasthma, but after the three years they stated that they were more confident peoplewho could cope with their disease, were physically active and most of them displayedno limitations in social life.

From these conclusions the following suggestions can be made on the basis of thestudy:

• Rehabilitation programmes for asthmatic patients should include physical train-ing and physiotherapy as a complement to the six-part management plan.

• Both newly diagnosed patients and patients with childhood asthma can benefitfrom a rehabilitation programme.

• Asthmatic patients with previous experience of physical training should also beoffered rehabilitation which includes physical training.

• By using a qualitative approach in studies of rehabilitation programmes, addi-tional knowledge can be gained about asthmatic patients’ own perceptions ofhow to deal with their disease and the problems that arise, factors of value indesigning rehabilitation programmes.

ACKNOWLEDGEMENTS

The authors are grateful to Professor Katherine Shepard, Temple University, Philadelphia, USA, forvaluable comments on the paper and for creative suggestions for the design of the study.

This work was supported by grants from the Swedish Foundation for Health Care Sciences andAllergy Research, Stockholm, and the Heart and Lung Patients National Association, Stockholm.

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