Attitudes toward physical activity among people with rheumatoid arthritis

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Physical activity confers health benefits in the general population, and this also seems to apply to people with rheumatoid arthritis (RA). Less explicit barriers ...
Physiotherapy Theory and Practice (2003) 19, 53 62 #2003 Taylor & Francis DOI: 10.1080/09593980390178513

Attitudes toward physical activity among people with rheumatoid arthritis Eva Eurenius, Gabriele Biguet, and Christina H. Stenstro¨m Physical activity confers health benefits in the general population, and this also seems to apply to people with rheumatoid arthritis (RA). Less explicit barriers than pain need to be explored and overcome to initiate and successfully maintain physical activity in individuals with RA. The present aim was to describe variations in attitudes to physical activity in a group of people with RA. Sixteen people with RA were chosen to represent various ages, genders, disease duration, functioning, and health habits. Semi-structured, in-depth interviews were carried out, transcribed, qualitatively analysed, and categorised on the basis of similarities and differences. The analysis indicated that attitudes toward physical activity could not be understood without inclusion of attitudes toward the disease and sometimes to life in general. Two dimensions of attitude, motivation and satisfaction, were identified. Four categories were revealed: motivated and satisfied, unmotivated and satisfied, motivated and dissatisfied, and unmotivated and dissatisfied, each representing different attitudes to physical activity. Our findings stress the importance of developing different educational interventions that address attitudes to physical activity in order to implement a healthy life style in individuals with RA.

INTRODUCTION Rheumatoid arthritis (RA) is a chronic, inflammatory, and systemic disease that affects mainly the musculoskeletal system. Synovitis is the main early clinical symptom of RA, and pain and stiffness are reported as major problems (Stenstro¨m et al, 1990). Exacerbation of the disease

Eva Eurenius, Rehabcentrum, Skelleftea˚ hospital, SE-931 86 Skelleftea˚, Sweden (address correspondence to Eva Eurenius at this address). Christina H. Stenstro¨m, Physiotherapy Unit, Karolinska Hospital, Stockholm, Sweden. Gabriele Biguet, Division of Physiotherapy, Neurotec Department, Huddings, Sweden. Accepted for publication 2 December 2002.

may cause fatigue and pain, joint destruction, and decreased physical performance as well as have a psychosocial effect. Mortality rates in RA are increased and linked to clinical severity, with a large excess of deaths attributable to cardiovascular and cerebrovascular diseases (Wolfe et al, 1994). Therapeutic interventions focus on decreasing disease activity and reducing disease consequences. Reduced aerobic fitness (Ekblom et al, 1974; Minor et al, 1988; Ekdahl and Broman, 1992), muscular endurance (Ekdahl and Broman, 1992) and strength (Ekblom et al, 1974; Ekdahl and Broman, 1992; Ha¨kkinen, Hannonen, and Ha¨kkinen, 1995), standing balance (Ekdahl and Andersson, 1989), and flexibility (Minor et al, 1988; Eberhardt and Fex, 1995) occur frequently in the disease course of RA.

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Decreased physical fitness may be ascribed to the disease itself but also to physical inactivity (Minor et al, 1988; Stenstro¨m et al, 1990; Ekdahl and Broman, 1992). Physical activity is an important strategy for patients with RA in their attempts to combat and control their symptoms (Affleck, Tennen, Pfeiffer, and Fifield, 1987; Kamwendo, Askenbom, and Wahlgren, 1999). The terms ‘‘physical activity,’’ ‘‘exercise,’’ and ‘‘physical fitness’’ are often confused with one another, so their differences need to be emphasised. Physical activity is defined as ‘‘any bodily movement produced by skeletal muscles that results in energy expenditure’’ while exercise is a subset of physical activity defined as ‘‘planned, structured, and repetitive bodily movement done to improve or maintain one or more components of physical fitness.’’ Physical fitness is ‘‘a set of attributes that people have or achieve that relates to the ability to perform physical activity’’ (Caspersen, Powell, and Christenson, 1985). These terms are often used interchangeably by many authors. In the present paper ‘‘physical activity’’ includes everyday physical activity as well as planned exercise. Exercise and leisure-time physical activities are less frequent among people with RA than in healthy people (Ekdahl and Broman, 1992; Centers for Disease Control and Prevention, 1997). In a group of 115 patients who had tried exercise, a majority reported limited success with an exercise regimen (Iversen, Fossel, and Daltroy, 1999). Negative predictors of physically active lifestyles may be related to demographics or to the disease itself. Physiologic adaptation may take longer in arthritis populations (Minor, 1996). People with arthritis with less formal education, longer duration of arthritis, and more effects of arthritis perceived fewer benefits of exercise (Neuberger et al, 1994). The most common reason given for lack of success with exercise was that the exercises were too painful (Stenstro¨m et al, 1990; Iversen, Fossel, and Daltroy, 1999). Cognitive behavioural factors also may predict limited physical activity. Nearly one-

third of a group of 140 patients expressed an unfavourable attitude toward performing regular home exercises for their arthritis (Iversen, Fossel, and Daltroy, 1999). As in the general population, lack of time seems to be an important reason for people with RA to stay physically inactive (Neuberger et al, 1994; Hammond, 1998; Iversen, Fossel, and Daltroy, 1999). There also are problems of knowing how to exercise correctly and difficulties in establishing habits (Hammond, 1998). Minor (1996) argued that lack of practice and fear of pain make it important to experience success and enjoyment early in the exercise regimen. A potential barrier to exercise that needs the therapist’s special attention is the patient’s motivation (Jensen and Lorish, 1994). Some positive factors predicting a physically active lifestyle have been identified among people with RA. The extent of feedback on exercise participation seems to correlate highly to exercise compliance for patients with different diagnoses (Sluijs, Kok, and van der Zee, 1993; Iversen, Fossel, and Daltroy, 1999). Compliance with an exercise regimen seems to be predicted by high self-efficacy for exercise (Stenstro¨m, Arge, and Sundbom, 1997; Iversen, Fossel, and Daltroy, 1999), and positive attitudes to its usefulness (Gecht, Conell, Sinacore, and Prohaska, 1996; Hjort, Lundberg, Eker¨ hman, 1999; Iversen, Fossel, and ga˚rd, and O Daltroy, 1999). Another predictor of exercise participation was found in individuals with RA who reported exercising in their youth (Neuberger et al, 1994). Thus, influencing a physically inactive person’s lifestyle is a very complex matter. Physiotherapists are well placed to incorporate physical activating strategies within their interventions for patients with RA. In a patientcentred approach that considers the patients’ needs and lifestyles, physiotherapists need to improve their understanding of different attitudes to physical activity among people with RA. A deeper understanding could be helpful for developing strategies on how to encourage physical activity within physiotherapy.

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OBJECTIVE The aim of the study was to describe variations in attitudes to physical activity in a group of people with rheumatoid arthritis.

MATERIALS AND METHODS Theoretical perspective A qualitative approach, phenomenography, was used to get a description and a deeper understanding of physical activity in RA. Phenomenography aims at description, analysis, and understanding of conceptions of the world around us. Emphasis is on the variation within a group, so as to arrive at a description of similarities and differences concerning how a certain phenomenon — in this study, attitudes to physical activity —is actually conceived of by individuals. A basic assumption is that the ways in which a certain phenomenon can be understood are limited. The dominating

method of data collection in phenomenography has been semi-structured interviews (Marton, 1981; Wenestam, 2000).

Participants The participants were chosen strategically by the hospital’s only rheumatologist to represent various ages, genders, disease duration, functioning, and health habits. Sixteen people with RA, 12 women and four men, participated (Table 1). Their diagnoses were based on criteria suggested by the American College of Rheumatology in 1987 (Arnett et al, 1988). They were all outpatients at the rheumatology unit of a district hospital and 14 patients were participating in the day rehabilitation programme. Function was estimated according to Steinbrocker’s (Steinbrocke et al, 1949) classification system. The minimum level of physical activity for each patient was defined as 30 minutes or more of moderate-intensity physical activity on most, preferably all, days of the week

Table 1 Sociodemographic, disease-, and health-related data for 16 individuals with rheumatoid arthritis Sex: female=male, n (%) Age: years, median and range Disease duration: years, median and range Married=partner: n (%) Living in own house: n (%) Education level: n (%) Comprehensive school (6 9 years) Upper-secondary school University Occupational status: n (%) Old-age pension or sickness pension Full-time sick-listed Part-time sick-listed Functional class: n (%) II III IV Level of physical activity: n (%) On minimum level or more Below minimum level Smokers=non smokers: n (%) Body Mass Index (BMI): n (%) Normal (18.5 24.9) Overweight (25 29.9) Obese (30 34.9) Severely obese (35 39.9)

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12=4 (75=25) 61.5 (32 78) 16.5 (1 45) 13 (81) 11 (69) 10 (63) 5 (31) 1 (6) 12 (75) 2 (12,5) 2 (12,5) 12 (75) 3 (19) 1 (6) 8 (50) 8 (50) 3=13 (19=81) 8 (50) 6 (38) 1 (6) 1 (6)

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(National Institute of Health, 1995; Pate et al, 1995; WHO=FIMS Committee on physical activity for health, 1995). Body mass index (BMI) was calculated by dividing self-reported weight (kg) by height (in metres squared) for each participant.

Interview procedure All the participants received oral and written information about the study. Their willingness to participate was assured by telephone or at a meeting with one of the authors (EE), who also was the interviewer. The semi-structured, in-depth interviews were held at the clinic except for two in the participants’ homes and lasted about 25 75 minutes — as long as either party had more to add about the phenomenon studied. An interview guide was used as a basis (Table 2). The interviews were directed by an interest in different attitudes to physical activity. Emphasis was, throughout, put on physical activity as including all activities that involve body movement. The interviews were audiotaped and thereafter transcribed verbatim, before the qualitative analysis was carried out.

Phenomenographic analysis The analyses were carried out in many steps by two authors (EE, CHS). First the transcribed interviews were read thoroughly several times to get familiar with them and to distinguish different kinds of statement. Thereafter the interviews were grouped preliminarily into

meaningful categories according to fundamental similarities and differences. The categories were cross-checked several times with the original interviews before the analysis was considered satisfactory. Consensus on the emerging categories was reached after discussions about alternative explanations. The essence of the similarities within each category was described. Next, the various categories were denoted as linguistic expressions capturing the essence of each category. Finally, contrasting —i.e. comparison of the categories with regard to the internal relations within the categories— was performed.

Ethics The Ethical Research Committee, Medical Faculty of Umea˚ University, approved the design of the study.

RESULTS During the analysis it became apparent that attitudes toward physical activity could not be understood without the inclusion of attitudes toward the disease and sometimes to life in general. Two dimensions of attitude, motivation and satisfaction, were identified. Motivation to do physical activity was generally described as inner motivational drives related to the person’s own needs. Satisfaction with physical activity was generally related to actual level of physical activity. Different combinations

Table 2 The interview guide used in the study Could you tell me a little about your disease? What kind of physical activities do you do at present? What is it that limits your physical activity? Are your family=your friends physically active? Were you physically active when you were young=before you had joint trouble? What made you do physical activities in those days? Do you see any possibilities of your becoming more physically active? What would you gain by being more physically fit? How do you think physical activity affects your present and future health? How do you live in general — do you think about your health?

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of motivation and satisfaction resulted in four qualitatively different attitudes to physical activity: ‘‘motivated and satisfied,’’ ‘‘unmotivated and satisfied,’’ ‘‘motivated and dissatisfied,’’ and ‘‘unmotivated and dissatisfied’’ (Figure 1). Each individual was considered to represent one attitude and thus contributes to one category only. Each category of attitudes will be described separately and illustrated with quotations from the interviews. The quotations are coded to identify a single individual. The characteristics of each category are summarised and presented in Table 3.

Motivated and satisfied The ‘‘motivated and satisfied’’ individuals had strong inner motivation for physical activity and stubbornness in the fight against the disease consequences. Acceptance of the disease was pronounced, but did not limit the drive to fight its consequences through physical activities. The disease itself was conceived of as a ‘‘motivator’’ for physical activity. A physically active lifestyle had been common before the onset of the disease. However, the activities were currently adapted to actual abilities and interests as a part of everyday life. Being physically active also was seen as mainly enjoyable. Activities happened through one’s own will and power, individually or together with friends with or without arthritis. The people in this category were aware of the benefits of physical activity to improve physical capacity and to impede the physical consequences of the disease. No but I think I do everything I can — I do actually . . . for then you hope to reach further and further, I certainly do. For this I shouldn’t think . . . yes, I probably went and trained anyway to keep [laugh] what I have . . . there’s a lot in that . . . the thought that you want to get better (7). Then you’re kind of stiffer about the hips and knees and all that. But you get used to it, in fact. And I try to keep

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active anyway, but you have to work at it. Then I’ve got this training bike . . . for the mornings when I’ve got myself going. You’re stiffest for a few hours in the morning . . . sit on the bike and somehow get the machinery going. I think that’s quite nice (9).

Unmotivated and satisfied Acceptance, adaptation, and indulgence relating to the arthritis characterised the individuals in the ‘‘unmotivated and satisfied’’ category. The disease was conceived of as a natural part of life, a limitation, and as impossible to influence. Previous demanding physical activities in daily life were no longer given priority, and this disease gain was mainly considered valuable. The actual physical level of (in-)activity was considered as sufficient, satisfying, and no reasons were seen to exceed it. No urge to become physically active or awareness of the benefits of physical activity was expressed among these individuals. I’m . . . like, if I just manage what I’ve done so far, then I kind of think I’m doing fairly well. Well, it’s not because I want to . . . but, well, I think I’m content with that. I don’t believe . . . because in my opinion after so many years you can’t get so well, when you’ve got this disease with everything off. When you’ve had all your joints that . . . for I must say I haven’t a single joint that hasn’t been attacked. I seem to be fairly supple anyway . . . and that’s that (6).

Motivated and dissatisfied A perceived inability to be physically active and an adaptation to the disease were the main characteristics of those in the category ‘‘motivated and dissatisfied.’’ The disease was conceived of as a burden and hard to put up with. It was accepted, though, and considered as inevitable. Previous physical everyday activities

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Fig. 1 Four categories were found within attitudes of physical activity in 16 individuals with rheumatoid arthritis.

were currently adapted to the disease to a sporadic extent, and a fighting instinct seemed to be lacking. The advantages of physical activity, such as independence and self-confidence, were known. Still, these people seemed to give up when facing physical or psychological obstacles to physical activity due to low inner motivation. Numerous repeated attempts to meet one’s own demands seldom resulted in increased physical activity. Disappointment and loss were expressed. In a way I’d perhaps like to be a bit more, but . . . I don’t know, a bit. I’ve been home a great deal all my life. Like, after work, when I started going out to work. So I haven’t exactly had time to be . . . have it like that. So it’s quite hard to start . . . well, it is. It always feels a bit like hard work, the business of going out (3). I think it’d have a good effect . . . a lot. But finding something physical that you can manage and be able to start a bit gently and work up. I think that would be good for . . . yes, body and temper and everything. And seeing that you manage a bit more and more, I think that’d be very useful . . . you have to find something and get started (5).

Unmotivated and dissatisfied The grip of the disease on the individual and the lack of things to be glad about were what characterised the individuals in the category ‘‘unmotivated and dissatisfied.’’ The disease totally dominated them and generated dependence on the environment, in turn resulting in perceived helplessness. Previous everyday physical activities had therefore been given up. Under the present circumstances motivation was lacking, as was any awareness of physical activity benefits. The lack of zest for life was brought up, as was physical and psychosocial suffering. Grief and loss related to the limited possibilities of influencing the present situation were expressed, and the meaning of life was questioned. Yes . . . there’s not much left these days. Before, I had lots of interests, but now it’s all gone. Now you just want the days to go. If you’re awake nights, it’s awful . . . not many hours (12).

DISCUSSION Data analysis revealed four qualitatively different attitudes to physical activity. They were further noted as constantly related to attitudes

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None to low Accepts that disease governs one’s life Active in everyday life

High Does not let it take over

Average to high

Motivated and Dissatisfied

Can improve and maintain physical capacity and increase selfconfidence

Hard to get

Sporadic to low

Low Adaptation although the disease has taken over Active in everyday life, with social slant Activities in everyday life Activities in everyday life, walks

Average to high

None to low

Unmotivated and Satisfied

Active life-style in everyday life and=or free time Activities in everyday life, walks, physical training and hobbies Extent of physical activity Regular, modified, a part of everyday None to sporadic life, max capacity Experience of present Mainly fun, an interest Uninterested physical activity Conceptions of the For preventing decline, maintaining No sizeable effect utility of physical and improving physical capacity activity

Physical activity before disease debut Current physical activity

Degree of unhealthy lifestyle Degree of motivation Attitude to disease

Motivated and Satisfied

Table 3 Characteristics of the four categories found within attitudes of physical activity in 16 individuals with rheumatoid arthritis

None

-

None

None

Active in everyday life

None Disease dominates

High

Unmotivated and Dissatisfied

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towards the disease itself in all four categories. This is not surprising with such a complex disease as RA, and also has been found in a previous ¨ hman, study (Hjort, Lundberg, Ekerga˚rd, and O 1999). However, we found variation across the categories in the combinations between attitudes toward the disease and those toward physical activity. Some individuals seemed to be defeated by the disease and had given up on much, including the idea of physical activity. Others had a pronounced acceptance without letting the disease rule their lives or attitudes to physical activity. Perhaps the most interesting findings were in those individuals with incongruencies between motivation and satisfaction. Attitudes towards the disease among those who were motivated and dissatisfied and those who were unmotivated and satisfied might seem similar. However, while the latter seemed to have accepted and even appreciated some disease gains, such as excuses for physical inactivity, the former, despite some kind of adaptation, still struggled to overcome barriers, including those related to physical activity. The main findings of our study regard the variation found in attitudes to physical activity, composed of different combinations of motivation and satisfaction. Obviously motivated individuals experienced possibilities to make active choices, while those with a more latent motivation had difficulties in taking action. The latter attitude has earlier been described as ‘‘dormant’’ motivation (Revstedt, 2000), and it might be important for physiotherapists to recognise this. Among the unmotivated individuals, those satisfied with being physically inactive may often be viewed as more ‘‘difficult’’ in clinical practice, as compared to those who are motivated but unsatisfied with their levels of physical activity. Relations between depression and low levels of activity (Beckham et al, 1992) may be reflected among the individuals in our study who were neither motivated nor satisfied. These people might primarily need medical or other kinds of help and support, and the physiotherapist has to identify and refer them to a multiprofessional health care team for prompt and appropriate help.

The relation between beliefs in the benefits of physical activity and behaviour varied across our four categories. Some individuals with awareness of benefits were physically active. This finding supports previous research (Gecht, Conell, Sinacore, and Prohaska, 1996; ¨ hman, 1999; Hjort, Lundberg, Ekerga˚rd, and O Iversen, Fossel, and Daltroy, 1999). Discrepancies between belief and practice have been discussed by Pate et al (1995) and Hammond (1998), and were particularly evident among our motivated and dissatisfied individuals. Moreover, some people were neither physically activity nor aware of the benefits. From our results it is unclear whether the unmotivated and satisfied individuals were truly unaware of the benefits of physical activity or whether their attitude was merely a way to dismiss health-related reasoning and defend their own low levels of physical activity. This raises ethical issues related to health-promotion versus personal integrity in individuals at high risk of developing lifestyle-related diseases (Blair et al, 1989). An important question is whether health professionals should accept these patients’ attitudes. As to the methodology used in our study, there are two reasonable questions. One is how varied the sample was obtained, another whether there were enough participants to describe variation in attitudes. As the results revealed four qualitatively different attitudes to physical activity forming a logical unit, there was probably saturation. This also is supported by the fact that no additional themes or aspects emerged from the last four interviews. In regards to sample variation, it was difficult to get a strategically selected sample, especially regarding age and disease duration. However, as outlined by Kvale (1996), in qualitative studies it is not common to randomise or stratify participants. Instead they are often selected because they are representative or unrepresentative, or simply because of their accessibility, which was the case in our study. Thus, as to external validity, or to any study with a qualitative design, our findings could not be valid for population groups in general, but nevertheless give

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important insights into the phenomenon studied. Other studies report findings similar to ours, thus supporting the validity of our results. In future studies, it would be of great interest to investigate how far our results can be transferable to other settings or categories of patients. We used several strategies to ensure the trustworthiness and the internal validity of the results presented. Two researchers (EE, CHS) were involved in preparing the initial interview guide, the data collection, and the qualitative analysis. The different steps in the analysis were described thoroughly and the results repeatedly discussed with individuals not involved in data collection or analysis. Sometimes, strategies such as triangulation are suggested to increase the validity of a qualitative study. However, triangulation aims not at criteria-based validation in which agreement among different sources confirms validity, but rather at increased understanding of complex phenomena (Malterud, 2001). In previous research, physical activity has been associated primarily with organised exercise and walks. Only as the result of follow-up questions have patients mentioned everyday activities such as household tasks (Kamwendo, Askenbom, and Wahlgren, 1999). It seems that patients meeting a physiotherapist relate primarily to planned exercise, which was the case in our study. However, as the main focus of our interviews was physical activity, our results represent unique knowledge in the field. They highlight the challenge to physiotherapists in guiding and encouraging their patients to different kinds of physical activity and not necessarily to planned exercise only.

Acknowledgments Financial support is gratefully acknowledged from the Swedish Rheumatism Association, the Foundation of Medical Research at Skelleftea˚ Hospital, the County Council of Va¨sterbotten, and Karolinska Institutet. Thanks also to Dr F. Laimer, for valuable support and assistance in the recruitment of participants for the study.

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