http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, Early Online: 1–8 ! 2015 Informa UK Ltd. DOI: 10.3109/09638288.2015.1061602
RESEARCH PAPER
What are the perceived barriers, facilitators and attitudes to exercise for women with rheumatoid arthritis? A qualitative study Susan Baxter1, Catherine Smith1, Gareth Treharne2, Simon Stebbings3, and Leigh Hale1 School of Physiotherapy, 2Department of Psychology, and 3Department of Medicine, University of Otago, Dunedin, New Zealand
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Abstract
Keywords
Purpose: This study qualitatively examined the attitudes and perceived barriers to exercise of women with rheumatoid arthritis (RA). We also explored the level of exercise that might be considered helpful or harmful, and whether walking would be an acceptable type of exercise. Method: Eight women with RA were interviewed via telephone using a semi-structured approach. Transcripts were coded for themes using the General Inductive Approach. These themes were used to develop a theoretical model of the effect of barriers and facilitators to exercise for women with RA. Results: Two themes emerged (social connections and fear). Social connections could facilitate participation in exercise or prove to be a barrier. Fear had three distinct sub-themes: fear of the unknown (including a safe level of exercise), fear of the known and fear for safety. For most participants, walking 3–4 times a week was thought to be an acceptable programme for themselves or others with RA. Conclusion: Among those interviewed, walking was considered an acceptable form of exercise for people with RA. Many of the barriers to exercise identified by participants could be alleviated by detailed instructions on the type and duration of exercise recommended. These findings inform the development of walking interventions.
Activity, chronic illness, exercise, rheumatoid arthritis History Received 11 August 2014 Revised 4 June 2015 Accepted 9 June 2015 Published online 30 June 2015
ä Implications for Rehabilitation
People with RA and various other chronic illnesses have previously been found to request more specific guidance for incorporating physical activity into their treatment. There was a willingness to participate in physical activity among our participants with RA. Activities such as walking appear to be feasible for people with RA but fears and social support can be barriers. Rehabilitation professionals are ideally placed to help people with RA overcome fears and social support barriers: providing encouragement to participate with others is recommended.
Introduction Rheumatoid arthritis (RA) is a long-term systemic inflammatory disease which affects women more than men and runs an unpredictable course [1]. RA is characterised by periods of exacerbation when the disease is active and periods of remission when symptoms may be mild or absent [2]. The predominant symptoms of RA are inflammation, pain and swelling in the joints, fatigue and functional impairment. RA is associated with onset of serious co-morbidities such as cardiovascular disease and osteoporosis [3]. These co-morbidities account for a reduced life expectancy and are the result not only of the disease itself, but also of some of the medications use to treat the disease, such as oral glucocorticoids [2].
Address for correspondence: Dr Susan Baxter, School of Physiotherapy, University of Otago, 362 Leith Street, Dunedin 9016, New Zealand. Tel: +64 3 479 5479. E-mail: [email protected]
Exercise can assist in RA symptom self-management. Furthermore, exercise can result in increased participation in activities of daily living, maintenance of function, improvement in quality of life, as well as lessening perceived symptom severity [4,5]. However, symptomatic RA can be a significant barrier to exercise participation due to pain, stiffness, fatigue and disability, as well as associated co-morbidities, such as cardiovascular disease [4,6,7]. In contrast to general population guidelines, there are no specific guidelines by the American College of Sports Medicine (ACSM) as to activity level, type, frequency or intensity for people with RA. General advice is that some exercise is better than being sedentary and it is recommended that people with long-term conditions can obtain benefit by following the recommendations for the general population as closely as possible [8,9]. However, people with RA report a lack of guidance specifically tailored to their condition or associated co-morbidities [10]. This disparity between the detailed information available to guide the general population may be a factor influencing the low levels
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of engagement in exercise activities documented in people with RA [11,12]. In the past, people with RA were generally advised to engage in exercises involving isometric contractions, as these were thought to be safer to avoid the risk of further joint damage [13]. In addition, advice has been to use strategies to reduce energy expenditure during the day [14]. Such advice conflicts with recent research which has shown that people with RA can experience increased strength, better quality of life, higher cardiovascular fitness and reduced disease severity, without adverse effects on pain, as a result of engaging in regular exercise activity [15]. Although health benefits from exercise activities have been demonstrated in people with RA, many of the studies which have added to this evidence have been interventions requiring the supervision of a health care professional or personal trainer. Furthermore, these studies have failed to show long-term benefits or maintenance of benefits beyond the term of the study [16,17]. Previous research in other long-term conditions, such as multiple sclerosis [18] has identified disease-specific barriers and interpretive processes [19], which may influence engagement in regular exercise. This indicates a need for a clearer understanding of the facilitators and barriers which may be specific to people with RA. A recent prospective study showed an association between light intensity physical activities and a reduction in the risk of both onset and progression of disability in people with osteoarthritis. This study showed that the frequency of activity was more important than its intensity, and suggests that people could be encouraged into greater activity if negative perceptions about high intensity exercise and associated pain could be dispelled [20]. The aim of the current study was to explore the question: What are the perceived barriers, facilitators and attitudes to exercise in people with RA? A secondary objective was to capture opinions and perceptions about walking as a form of exercise.
Methods Design The design was constructed from the literature by the primary researcher determining the best qualitative approach to answer the research question. The primary researcher (S. B.) was a PhD candidate and also a fitness instructor and amateur athlete. The co-researchers are academics with expertise in fatigue (C. S., L. H., S. S. and G. T.), physiotherapy (C. S. and L. H.), rheumatology (S. S.) and health psychology (G. T.). A telephone interview study using the General Inductive Approach [21] to guide thematic analysis of the qualitative data was carried out. Semistructured interview questions were developed by the primary researcher to explore the attitudes, barriers and facilitators of exercise and physical activity in people with RA (Figure 1) using open-ended questions. The questions were developed around identified gaps in the current literature. The primary researcher (S. B.) practiced interviews and these questions on volunteers who did not have RA to ensure familiarity, translation and accuracy in interview processes. The questions seemed acceptable and relevant to the first participant in our study and no changes to the protocol or questions were deemed necessary following this interview. Inclusion/exclusion criteria Adults with a diagnosis of RA aged 18 years and above, with the ability to walk 200 m or more unassisted, were eligible for inclusion. Diagnosis of RA was confirmed by a rheumatologist. Participants were excluded where there was an inability to communicate in English, or if the individual’s ability to give
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informed consent to participate was impaired. Ethical approval was obtained from the New Zealand Lower South Regional Health Board in accordance with the Treaty of Helsinki (12/CEN/1). Participants Participants (diagnosed with RA by a consultant Rheumatologist) were approached in the rheumatology outpatient clinic of a New Zealand public hospital by the primary researcher and given a research study information sheet. Those who were interested were posted a consent form and a questionnaire requesting demographic details, including sex, age and vocation. Sampling was continued until saturation of the topic was reached and the same thematic information was being given by ongoing participants. At saturation point, no further interviews were scheduled. Eighteen people with RA were approached of whom eight agreed to participate (44%). Reasons for non-participation included not meeting the criteria for eligibility (n ¼ 4), already being involved in other projects (n ¼ 2) and vacations planned (n ¼ 3). One participant did not give a reason. All eight participants were women of New Zealand European descent, with a mean age of 62 years (range 56–82 years). Mean duration of RA was six years (range 5–29 years). Six participants worked part-time and two were not employed. The interviews lasted around 40 min, with a range of 30–84 min. Data collection On receiving the signed consent form and the completed demographic information questionnaire, an interview time was arranged. Telephone interviews were conducted at a time convenient to the participant using a Skype account to the participant’s landline telephone number. The interviews were recorded digitally through software in adjunct to Skype. Interviews were conducted via telephone to sample without local regional restriction as the outpatient clinic spans a large region of New Zealand. Furthermore, telephone interviews allow an element of anonymity that might be conducive to less response bias in answering questions within a group situation [22]. Once the interview was complete, detailed field notes were made to provide context for the transcription process. The audiorecordings were transcribed word for word by hand into word processing software and checked for accuracy by a second researcher. The process of transcription served as the first step of analysis and increased familiarity with the text. Telephone interviews took place within the space of four weeks of recruitment, with less than six days between initial interview recording and transcription. Analysis of the transcriptions commenced immediately once two interviews had been completed. This process then informed subsequent interviews using a constant comparison process. Data analysis The method of data analysis chosen was the General Inductive Approach as described by Thomas [21], which is recognised as a pragmatic approach in healthcare research [23]. The transcripts were read several times to identify groups of meanings or codes within the data that answer the research question about perceived barriers, facilitators and attitudes to exercise in people with RA. Codes were then organised into themes, in a three-stage process. The first stage of analysis involved coding the data immediately after every two telephone interviews. Data were managed using word processing documentation. Segments of text were reassessed and refined by adding a label to the codes, and these
Barriers and facilitators to exercise in RA
DOI: 10.3109/09638288.2015.1061602
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Questions for the Qualitative interviews Exercise is a physical activity that is planned, structured, and repetitive and has as an objective the improvement or maintenance of physical fitness. Physical activity is the act of movement of the skeletal system expending energy. 1.
What have you done in the past for exercise?
…. there are some people who think that people with RA should rest when experiencing a flare up or fatigue and pain and there are others who believe that exercise is still really important despite fatigue and pain…What are your experiences? 2.
What way do you think other people react to someone with RA who regularly exercises? Is this different from how people might react to other activities, e.g. reading? o
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3.
Friends, colleagues, family, doctors
What is your experience, for engaging in exercise? o
What stops you?
o
What motivates you?
o
What would encourage/ discourage you from exercising?
4.
What is your exercise preference?
5.
How much exercise do you think you would be capable of (duration, intensity, frequency)
6.
What would make participating in any form of physical activity or exercise most enjoyable?
7.
What stops PwRA from going on a walk as a form of exercise?
8.
What do PwRA tend to think about walking?
9.
What is different between walking and other forms of exercise you do? Would walking be more enjoyable, less enjoyable?
10. How many times a week do you think that someone with RA would/ should go on a walk? 11. Can you make some suggestions about how you might be able to fit walking into your day or your week? (Little but often? Or a few times a week?) Other suggestions: •
What are your thoughts about exercising and RA?
•
What would encourage/ discourage you from exercising?
•
What forms of exercising do you think would be best for PwRA?
•
What factors would encourage/discourage people from taking part in a walking programme?
•
What gains would you expect from an exercise program? (fitness or otherwise?)
•
Some people have mentioned that they might enjoy walking with other people, what do you think about this?
Figure 1. Questions for the qualitative interviews.
labels were refined and collapsed as necessary to reduce any overlap. Within these, the key themes in relation to the research question were identified from the text and the labels that were formed [21,24]. In the second stage, the preliminary analysis was independently checked by two other researchers (C. S. and G. T.) using the same methods, and instructions for coding and theming of the data. Any discrepancies were discussed and rationalised between checkers. In these initial two stages of coding, five preliminary themes were identified. Data were then analysed in the third stage by iterative discussion between the research team. Trustworthiness, rigor and verification For further verification and trustworthiness of the findings, an independent informant with RA was asked to review the research questions and the developed themes. This person was recruited in the same way as the main study participants, and the themes and answers were presented to them. The verifier did not suggest any
modifications or changes to the themes identified and agreed upon in the third stage of analysis.
Results After the third level of analysis two overarching themes were identified and agreed upon (1) social connections and (2) fear. The theme of social connections also had a component of fear (as in the fear of causing more distress to loved ones) as well as the immediate facilitative support from loved ones. The theme of fear incorporated three sub-themes (fear of the unknown, fear of the known and fears for safety). The development of a theoretical model from the themes can be seen in Figure 2. Several participants (4/8) also discussed walking as an exercise option before the topic was mentioned, and indications were given as to an acceptable level of exercise. The themes and their sub-themes are discussed below. Participants have been provided with pseudonyms; other
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Alice: and wait yes you maybe could do something that gets you moving like walking. Cindy: ‘‘if you had someone to go with you. If you didn’t have a dog, maybe a friend?’’
Social connecon Fear
Unknown
Safety
Known
Overall, social connections encouraged pursuit of exercise, especially if someone else was able to exercise with them despite the fear of causing distress to loved ones who worried about participants’ safety. Theme 2: fear
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Figure 2. The model of the two themes about barriers to exercise among people with RA.
masked details are explained within triangular brackets within quotes. The context, in parenthesis, for the quotes is also added. Theme 1: social connections The first theme, social connections was an integral part of all of the responses regarding physical activity, since participants said that they were often dependent (both psychologically and practically) on the support of their loved ones when engaging in exercise (5/8). In contrast, some participants were concerned that their participation in exercise would cause additional worry for their support person and this led to a reluctance to engaging in exercise (fear of causing more distress to loved ones): meaning that social connections could both act as a barrier and facilitator to exercise even within the same person. Participants indicated that the unpredictable nature of the condition caused support persons to worry that exercise might cause a flare up of symptoms due to over exertion. Empathy for the worry experienced by caregivers and support people as an additional stress beyond the nature of RA was also evident, especially given the confusion or lack of understanding of their physical capabilities both as a baseline capability and as a day to day indicator in lieu of markers of disease severity or pain. This was compounded by worries about creating concern and tension within the relationships. As Sally expressed: ‘‘You don’t want to put more on the people who are looking after you all day as it is’’. Heather reiterated this point by stating ‘‘People might be a bit worried. Or they probably would think it was good if it was a work out plan for them that ummm if someone had made it, a professional then it would be good for the person so people wouldn’t mind’’. Participants often mentioned the tension that the unpredictability of RA already brought to their relationships and were concerned that attempting to exercise would exacerbate this, as Nancy explains: ‘‘It was so tough as I wanted to do what I know I could do. But I just couldn’t. I would get into fights a lot with5my husband4 because of that. I was stressed and sad and then he would be stressed and worried that I had done too much’’. One issue identified was that the ability to share the activity with another person would facilitate physical activity or make it more enjoyable. Many participants had a positive attitude of willingness and desire to engage in exercise such as walking, particularly with another person or a dog.
The second theme was that of different aspects of fear which formed barriers to physical activity participation. In this analysis, fear is represented by three sub-themes: fear of the unknown, fear of the known and fears for safety. Within fear of the unknown there were two topics highlighted: the role of the health professional and the contrast of overwhelming information in relation to medications and treatments to the lack of specific information regarding exercise. Within the sub-theme fear of the known was the known complexity of the disease and the complexity of information presented about how to medically manage RA. Encompassing both fear of the known and fear of the unknown was fears for safety, which included experiences that the participant could acknowledge as being unsafe, such as geographical remoteness and inability to communicate should an accident happen, as well as not knowing just how severe the symptoms of RA could be on a particular day. Each of the subthemes will be discussed separately in the sections below. Sub-theme 2.1: fear of the unknown Fear of the unknown was generated by the unpredictable nature of RA. This concept included the fear engendered by knowing neither how, when or what to do to reduce the likelihood and severity of flare-ups, nor how to prevent further damage to their joints from the disease. Issues were raised relating to confusion around the health professional’s role, and also about the overwhelming quantity of information communicated to patients. For example, the different ways that medication could and should be adapted based on symptoms. Rheumatoid arthritis is characterised by periods of exacerbations and periods of remission. These ‘‘flare-ups’’ are unpredictable and are attributed to several different factors such as stress, cold weather, getting ‘‘run down’’ or ‘‘doing too much’’, and occasionally have no known cause. Emma describes how unexpected a flare up can be: ‘‘And just when you think you are right back on your feet again something like that 5a flare up4 knocks you for six’’. Fear of the unknown around exercise and not doing too much was specifically mentioned, with consequences of an earlier death, getting sicker and not knowing whether exercise difficulty was an indication of whether an exercise was deemed as inappropriate for them. Nancy summed this up by saying: ‘‘I knew what I could do and what I couldn’t do. Now I just have no idea. I mean I have asked the doctors and they say just do as much as you can’’. A further aspect of this fear of the unknown as expressed by participants is that there is currently little information or guidance about how people with RA might safely exercise in terms of level, type, intensity and duration of activity. Some participants were therefore hesitant to pursue an activity or an intervention that they worried might exacerbate the signs and symptoms of the illness, as Emma noted: ‘‘you know it’s hard doing certain things for exercise but is that coz its exercise or is that because I shouldn’t be doing it?’’
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In contrast, one participant responded that, despite being aware that exercise was good for her, she did not think that anyone actually wanted to exercise, but they did it because they felt they ‘‘had to’’. A dominant feature of fear of the unknown was the information available on staying active and in particular specific details on recommended exercises which were not provided by healthcare practitioners. This was at odds with the overwhelming amount of information presented for managing the disease through medication. This fear of the known is presented in the following sub-theme.
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Sub-theme 2.2: fear of the known Fear of the known encompassed issues surrounding the treatment and nature of RA. Participants knew that exercise would be of benefit to them but that there were greater considerations with respect to the safety of exercises in their situation. They were also aware of the complexity of the disease (known) however that the disease had an unpredictable disease path (unknown) and this presented and created fear within a different sub-theme of fear of the unknown. Participants expressed the view that the general practitioner (GP) should be making exercise recommendations. This seemed to be in part due to a general perception that persons with a medical condition should consult with a GP before commencing a new exercise regime. It seemed a logical progression for some of the participants to feel that GPs would be the most appropriate health professional to advise with regards to exercise: If my doctor told me and said go and do x y and z I would do them but I don’t have that. (Emma) You always have to ask the doctor before you do itð. It sounds silly but I think it’s dangerous to be unfit and exercise. (Sally) This expectation contrasted sharply with how some participants described how GPs introduced exercise during consultation sessions. A typical description was expressed by Heather ‘‘I think that the doctor said something about staying active but she didn’t say whatð’’ This statement was acknowledged to be in stark contrast to the information presented on the medical management through pharmaceutical means. However, participants knew that they had limits on their activity, and expressed less extreme forms of exercise, such as walking above participating in marathons, for example Sally said: ‘‘If this, then this and reduce this and take this. It’s frightening to think about all of thatð. It’s a lot of advice and we both try to sit and remember’’. Emma felt the same ‘‘Well something not too intense? I wouldn’t say enter an ironman or ummmmð. But yes maybe swimming or you could go for a walk or ru (starts to say ‘run’)ð but that’s not for everyone if your condition is bad then maybe walk. Yes or aqua jog. Participants also felt that they could adequately determine the levels of exercise they were capable undertaking, such as how often they thought a person with RA could engage in activity and the most appropriate types of activity. A range of answers to this question was apparent, ranging from every day to a few days per week, with an average of 3–4 times a week thought to be an acceptable programme for themselves or others. Of note, some of the activities mentioned by participants were gym-based exercising, pool sessions, walking and running. Fear of the known was a sub-theme that acknowledged that whilst participants were able to participate in physical activity,
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that there was also known limitations that had to be imposed on physical activities due to the nature of RA. Sub-theme 2.3: fear for safety Fears for safety was a sub-theme that linked both fear of the known and fear of the unknown: in terms of environment for exercise (known risks), and in terms of tailoring exercise in response to changes in disease severity (unknown). Participants were able to identify that certain environmental aspects posed additional risks: such as fear of falling on the uneven terrain or inclement weather (known) isolated areas where immediate access to help was unlikely. Other unknowns surrounding safety included concerns around how much a person might be capable of doing on a particular day. The following two quotes illustrate aspects of safety from the perspectives of fear of the known and fear of the unknown. Nicole describes her fear of not knowing whether she will be able to walk back to her car after walking the dog: ‘‘Or sometimes I feel quiteð. Um incapable and helpless coz I know I am walking limping and when I can’t get back into my car or pick up the ball from throwing it around’’. Becca describes the known risk of exercising in a deserted location: ‘‘if there was a safe place withð. If there were people around not a deserted neighbourhood, not too many hills or dirty’’. Social connection appeared to be a linking factor that encompassed all of the areas of the themes, which was reflected in the model generated. Within the social connection there were also elements of fear: these were fears that could be identified (known) and also the unknown elements that a disease with an unpredictable disease course conveyed. Overlapping these elements of fear was fears for safety, again with elements of fear from the known and fear from the unknown. These relationships between social connections and fear in women with RA are illustrated in Figure 2. Overall, fear acted as a barrier to exercise participation. Specifically, fear of the unknown resulted in participants feeling unsure about whether exercise could help or harm their condition. Also, participants did not have any knowledge about the intensity duration and frequency at which they could safely exercise; fear of the known appeared to present an indirect barrier to exercise as participants had an expectation that their doctor (who could provide detailed and copious information about medical management) would be the best health care practitioner to provide advice about exercise, yet this was not the case. Woven through these sub-themes were known and unknown aspects of safety. Many participants were able to identify known aspects of safety and while this could be seen as an immediate barrier to exercise engagement, the identification of these immediate barriers might help participants with planning exercise activities. Unknown aspects of safety appeared to present the most difficult barriers, particularly when participants did not know how far they could push themselves and still be able to return home safely from exercise.
Discussion This study explored perceptions related to physical activity in women with RA, together with factors which may both facilitate and create barriers to an involvement in exercise to inform a feasibility physical activity intervention. This research was the first that has identified the primary perceived barriers to commencing exercise and the factors that people with RA believe affect ability to participate in exercise. Overall two key themes emerged: social connections and fear. Social connections related to two main aspects of consideration for the participant: there was the immediate support of loved ones, in contrast to the fear of
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extra fear caused to loved ones. Within the theme of fear were the distinct sub themes of fear of the unknown, fear of the known and fears for safety. The participants with RA were concerned that engaging in too much activity might compromise their disease outcomes negatively and result in an extra burden on their social support networks. This concern should be addressed in any future recommended exercise interventions for people with RA, in particular by addressing the fear of the unknown by making specific recommendations on type, frequency and intensity of exercise. Participants in this study reported that they were more likely to engage in an activity if there was someone with whom they could to do the activity with; this is also beneficial in adding a level of accountability and possibly in improving persistence with a programme. Prior questionnaire data from 154 people with RA indicated that despite high intentions, personal factors including demographic details can play a part in the adherence to and participation in exercise [25]. Social connections could be utilised positively by creating an opportunity for the participant to engage in activity with another person, such as a family member or a friend, or creating a network opportunity with a social walking group. The potentially positive influence of social connections is in keeping with outcomes from previously researched interventions. In a cohort study of people with RA (n ¼ 116), initial psychological distress was found to be significantly associated with high psychological distress 4 years later, and after controlling for all variables, social support was independently associate with lower stress [26]. Alleviating stress by activating support mechanisms could, for example, enhance exercise adherence in people with RA. Safety concerns surrounding the location for physical activity and walking can be addressed by assessing and evaluating the intended environment as recommended in previous research on older adults addressing mobility issues [27]. Walking was suggested by most participants (6/8) to be a desirable physical activity. The potential benefits of walking are that it could be easily understood by participants, and could exploit the support methods explored and suggested by participants in this study, as emphasised by the theme of social connections. Participants reported that social influences had both a positive and negative effect on participation in exercise, in regards to balancing uptake with not causing further worry or upset to caregivers. This finding is supported in a study by Snippe et al. [28], where overprotective behaviour by partners could act as a barrier to activities of people with chronic obstructive airways disease. Another advantage of walking is that it does not require expensive equipment and can be done in convenient locations, as long as they were considered safe. It has been shown that high compliance rates to physical activity are possible in older adults with RA in a long-term exercise programme [29] provided that satisfaction is perceived to be high, and that the exercise is accessible, affordable and fun [30], which participants in this study have indicated walking might be. There is a lack of evidence for benefit to fitness from light physical activities for people with RA to undertake (such as walking), despite research in senior citizens advocating that walking could be potentially the route to better health [31] and therefore a need for more research in this area. Considerations for such research include physical location, which was specifically mentioned as a barrier to exercise in the current study within the theme of fear for safety. Any exercise programme might need to address issues such as darkness, damp and dirt in terms of location, as people with RA often report that their symptoms are made worse by damp and cold conditions [32]. In creating a sustainable exercise intervention that required outdoor activities
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practical advice on rescheduling an alternative may be important to sustain regular exercise [33]. Patients often feel empowered when they can take control of their own illness and exercise may be seen as a positive step that individuals can take to enhance their own health [34]. However, participants in this study reported feeling overwhelmed by the plethora of information relating to their condition provided within an individual consultation. With a potentially complex physical activity intervention, it is important to consider separate consultations with a health professional to discuss how exercise goals could be achieved to prevent creating additional fear and stress. The contrast of depth of information in treatment interventions between exercise and medication could provide a possible reason for heightened fear about adopting exercise. This, coupled with participant concerns (or more importantly their beliefs on whether or not their fears have been addressed), has been shown previously to correlate with patient adherence with treatment procedures; these concerns are not only limited to pharmacological treatments but also lifestyle interventions [4]. This disparity and contrast in depth of information is consistent with research by Radford [35] where a sample of people interviewed with RA after initial and follow-up consultation advocated the need for involvement in selection of treatment (choice) and also support above and beyond simple information delivered to them on treatment. Another issue regarding treatment is self-efficacy: people with RA and other ‘‘long term’’ conditions often have poor selfefficacy in regard to their treatment (and physical activity), especially if they are newly diagnosed with the illness or if the condition has an unpredictable disease course [36–39]. Exercise could improve self-efficacy for managing the condition by the process of empowering people and increasing their confidence in their ability to adopt new health behaviours: which has previously been linked to both pain and quality of life in people with long term conditions [37]. Designing a low complexity intervention could help to alleviate patient concerns regarding the quantity and complexity of information delivered, while enhancing self-efficacy. A simple intervention that required little to no training or supervision might help to relieve tension and fear around engaging in exercise, which probably explains why participants in this study indicated that walking might be a beneficial exercise. A simple and effective way of addressing such fears in a clinical setting might be to provide specific detailed information to the individual on exercise targets: the number of times a week, and the intensity that should be experienced. Although such information should be succinct and easily assimilated by the person, it would be easy for practitioners to overlook such advice when the consultation may be dominated by more immediate demands of managing pain and symptoms of RA [40]. This would suggest an alternative approach to providing the necessary recommendations for exercise. Perhaps a patient education initiative would be beneficial to encourage an individual that visiting their GP is for medical help, and that referral to an exercise health professional with expert knowledge in RA is for specific help and guidance on exercise. Furthermore, the model developed from this research could be informative in assisting healthcare practitioners to understand the concerns and factors impacting decision making and behaviour in people with RA. Since fear and social connection have been highlighted as key factors, acknowledging their role in a consultation in regards to treatment may assist in alleviating some of the tensions caused and facilitate in prescriptions and recommendations around exercise as part of treatment. Better understanding of the concepts relating to patient centred care can be assistive in creating the best condition management strategies
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and better patient outcomes. Notwithstanding this, the results and incorporation of this model can potentially inform a wider RCT intervention for women with RA.
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Strengths and limitations The strength of this study lies in the qualitative design that explored in-depth the opinions and attitudes of people with RA. A limitation to this was that participants were volunteers and thus the opinions gained were from those people proactive enough to talk about their exercise, or lack thereof, experiences. Those people with RA that do not believe in exercise or physical activity may not have volunteered. A further strength of the study was that the findings were verified by a person with RA who was not involved in the interview process. Another strength of the study protocol was using telephone interviews, which provides a sense of anonymity for participants, and therefore may facilitate more honest answering than face to face interviews or focus group interviewing would provide [22]. This study was aimed at investigating the barriers and facilitators to exercise and whether walking was an acceptable intervention. A number of the questions led the participants to talk about walking for this reason, and thus the findings that walking was an intervention of choice may have been guided more by the interview process than by what participants truly believed. A study that explored the topic of physical activity more broadly may yield different results. Sample size and sex of participants might be a limitation. While our study was open to both men and women, only women volunteered to be participants. Although more women than men have a diagnosis of RA [1], we cannot assume that the experiences of women in our study are similar to those of men with RA and, it might be useful for future studies to purposively recruit only men in order to explore this further. Saturation of the data was believed to occur when there were a low number of interviews, perhaps due to the concise aspects to be determined in this study. If the full topic of RA and exercise was explored, a greater number of participants might be required.
Conclusions This study identified potential barriers for people with RA to participating in physical activity or exercise. In particular, the uncertainty of what type of exercise was recommended and how long and how often to exercise for were highlighted. Facilitators to exercise were considered to be immediate support of loved ones and having a safe environment to exercise in. Participants in this study considered that an acceptable exercise frequency was 3–4 times per week. Furthermore, participants endorsed walking as an acceptable physical activity for people with RA. The practical ways to address these barriers to exercise would be to ensure that succinct and direct guidelines on exercise type and frequency are provided, and that there was an incorporation of social connection in the physical activity by either encouraging others to join the person or providing opportunities for people with RA to incorporate walking with pets.
Declaration of interest The authors report no declarations of interest.
References 1. Lawrence JS. Epidemiology of rheumatoid arthritis. Arthritis Rheum 2005;6:166–71. 2. Scott DW, Wolfe F, Huizinga TWJ. Rheumatoid arthritis. Lancet 2010;376:1094–108.
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3. Sokka T, Hakkinen A, Kautiainen H, et al. Physical inactivity in patients with rheumatoid arthritis: data from twenty-one countries in a cross-sectional, international study. Arthritis Rheum 2008;59: 42–50. 4. Knittle K, De Gucht V, Maes S. Lifestyle- and behaviour-change interventions in musculoskeletal conditions. Best Pract Res Clin Rheumatol 2012;26:293–304. 5. Veitiene D, Tamulaitiene M. Comparison of self-management methods for osteoarthritis and rheumatoid arthritis. J Rehabil Med 2005;37:58–60. 6. Henchoz Y, Zufferey P, So A. Stages of change, barriers, benefits, and preferences for exercise in RA patients: a cross-sectional study. Scand J Rheumatol 2013;42:136–45. 7. Sarkin JA, Nichols JF, Sallis JF, Calfas KJ. Self-report measures and scoring protocols affect prevalence estimates of meeting physical activity guidelines. Med Sci Sport Exer 2000;32:149–56. 8. Haskell WL, Lee I-M, Pate RR, et al. Physical activity and public health: updated recommendation for adults from the American College of Sports Medicine and the American Heart Association. Circulation 2007;116:1081. 9. van den Berg MH, van der Giesen FJ, van Zeben D, et al. Implementation of a physical activity intervention for people with rheumatoid arthritis: a case study. Musculoskeletal Care 2008;6: 69–85. 10. Bernatsky S, Feldman D, De Civita M, et al. Optimal care for rheumatoid arthritis: a focus group study. Clin Rheumatol 2010;29: 645–57. 11. Law R, Markland DA, Jones JG, et al. Perceptions of issues relating to exercise and joint health in rheumatoid arthritis: a UK-based questionnaire study. Musculoskeletal Care 20l3;11:147–58. 12. Ehrlich-Jones L, Lee J, Semanik P, et al. Relationship between beliefs, motivation, and worries about physical activity and physical activity participation in persons with rheumatoid arthritis. Arthrit Care Res 2011;63:1700–5. 13. Walsmith J, Roubenoff R. Cachexia in rheumatoid arthritis. Int J Cardiol 2002;85:89–99. 14. Forrest G, Rynes RI. Exercise for rheumatoid arthritis. Contemp Intern Med 1994;6:23–8. 15. Bilberg A, Ahlmen M, Mannerkorpi K. Moderately intensive exercise in a temperate pool for patients with rheumatoid arthritis: a randomized controlled study. Rheumatology 2005;44: 502–8. 16. Baillet A, Payraud E, Niderprim VA, et al. A dynamic exercise programme to improve patients’ disability in rheumatoid arthritis: a prospective randomized controlled trial. Rheumatology 2009;48: 410–15. 17. Hakkinen A, Malkia E, Hakkinen K, et al. Effects of detraining subsequent to strength training on neuromuscular function in patients with inflammatory arthritis. Br J Rheumatol 1997;36: 1075–81. 18. Smith C, Hale L, Olson K, Schneiders AG. How does exercise influence fatigue in people with multiple sclerosis? Disabil Rehabil 2009;31:685–92. 19. Reynolds F, Prior S. ‘A lifestyle coat-hanger’: a phenomenological study of the meanings of artwork for women coping with chronic illness and disability. Disabil Rehabil 2003;25:785–94. 20. Dunlop DD, Song J, Semanik PA, et al. Relation of physical activity time to incident disability in community dwelling adults with or at risk of knee arthritis: prospective cohort study. Br Med J 2014;348: g2472. 21. Thomas DR. A general inductive approach for analyzing qualitative evaluation data. Am J Eval 2006;27:237–46. 22. Novick G. Is there a bias against telephone interviews in qualitative research? Res Nurs Health 2008;31:391–8. 23. Smith CM, Hale LA, Mulligan HF, Treharne GJ. Participant perceptions of a novel physiotherapy approach (‘‘Blue Prescription’’) for increasing levels of physical activity in people with multiple sclerosis: a qualitative study following intervention. Disabil Rehabil 2012;35:1174–81. 24. Creswell JW. Qualitative inquiry and research design: choosing among five approaches. Thousand Oaks (CA): Sage; 2012. 25. Vervloesem N, Van Gils N, Ovaere L, et al. Are personal characteristics associated with exercise participation in patients with rheumatoid arthritis? A cross-sectional explorative survey. Musculoskeletal Care 2012;10:90–100.
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26. Benka J, Nagyova I, Rosenberger J, et al. Social support and psychological distress in rheumatoid arthritis: a 4-year prospective study. Disabil Rehabil 2012;34:754–61. 27. Rantanen T. Promoting mobility in older people. J Prev Med Public Health 2013;46(Suppl 1):S50–4. 28. Snippe E, Maters GA, Wempe JB, et al. Discrepancies between patients’ and partners’ perceptions of unsupportive behavior in chronic obstructive pulmonary disease. J Fam Psychol 2012;26: 464–9. 29. Munneke M, de Jong Z, Zwinderman AH, et al. Adherence and satisfaction of rheumatoid arthritis patients with a long-term intensive dynamic exercise program (RAPIT program). Arthritis Rheum 2003;49:665–72. 30. Ward J. Exercise and the older person. Aust Fam Physician 1994;23: 642–5, 8–9. 31. Aoyagi Y, Shephard RJ. Steps per day: the road to senior health? Sports Med 2009;39:423–38. 32. Feinglass J, Lee J, Semanik P, et al. The effects of daily weather on accelerometer-measured physical activity. J Phys Act Health 2011;8: 934–43. 33. Sherwood NE, Jeffery RW. The behavioral determinants of exercise: implications for physical activity interventions. Annu Rev Nutr 2000;20:21–44.
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34. Wettstein A, Baldegger E, Weber M, et al. Can empowerment of elderly with chronic disease be achieved in Switzerland? First results of the ALLFIT program in Zurich. Praxis 2003;92: 1171–6. 35. Radford S, Carr M, Hehir M, et al. ‘It’s quite hard to grasp the enormity of it’: perceived needs of people upon diagnosis of rheumatoid arthritis. Musculoskeletal Care 2008;6:155–67. 36. de Moraes Vieira EB, de Goes Salvetti M, Damiani LP, de Mattos Pimenta CA. Self-efficacy and fear avoidance beliefs in chronic low back pain patients: coexistence and associated factors. Pain Manag Nurs 2014;15:593–602. 37. Knittle K, De Gucht V, Hurkmans E, et al. Effect of self-efficacy and physical activity goal achievement on arthritis pain and quality of life in patients with rheumatoid arthritis. Arthrit Care Res 2011;63: 1613–19. 38. Marcus BH, Selby VC, Niaura RS, Rossi JS. Self-efficacy and the stages of exercise behavior change. Res Q Exerc Sport 1992;63: 60–6. 39. Napolitano MA, Papandonatos GD, Lewis BA, et al. Mediators of physical activity behavior change: a multivariate approach. Health Psychol 2008;27:409–18. 40. Ahlstrand I, Bjork M, Thyberg I, et al. Pain and daily activities in rheumatoid arthritis. Disabil Rehabil 2012;34:1245–53.
RESEARCH PAPER
What are the perceived barriers, facilitators and attitudes to exercise for women with rheumatoid arthritis? A qualitative study Susan Baxter1, Catherine Smith1, Gareth Treharne2, Simon Stebbings3, and Leigh Hale1 School of Physiotherapy, 2Department of Psychology, and 3Department of Medicine, University of Otago, Dunedin, New Zealand
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Abstract
Keywords
Purpose: This study qualitatively examined the attitudes and perceived barriers to exercise of women with rheumatoid arthritis (RA). We also explored the level of exercise that might be considered helpful or harmful, and whether walking would be an acceptable type of exercise. Method: Eight women with RA were interviewed via telephone using a semi-structured approach. Transcripts were coded for themes using the General Inductive Approach. These themes were used to develop a theoretical model of the effect of barriers and facilitators to exercise for women with RA. Results: Two themes emerged (social connections and fear). Social connections could facilitate participation in exercise or prove to be a barrier. Fear had three distinct sub-themes: fear of the unknown (including a safe level of exercise), fear of the known and fear for safety. For most participants, walking 3–4 times a week was thought to be an acceptable programme for themselves or others with RA. Conclusion: Among those interviewed, walking was considered an acceptable form of exercise for people with RA. Many of the barriers to exercise identified by participants could be alleviated by detailed instructions on the type and duration of exercise recommended. These findings inform the development of walking interventions.
Activity, chronic illness, exercise, rheumatoid arthritis History Received 11 August 2014 Revised 4 June 2015 Accepted 9 June 2015 Published online 30 June 2015
ä Implications for Rehabilitation
People with RA and various other chronic illnesses have previously been found to request more specific guidance for incorporating physical activity into their treatment. There was a willingness to participate in physical activity among our participants with RA. Activities such as walking appear to be feasible for people with RA but fears and social support can be barriers. Rehabilitation professionals are ideally placed to help people with RA overcome fears and social support barriers: providing encouragement to participate with others is recommended.
Introduction Rheumatoid arthritis (RA) is a long-term systemic inflammatory disease which affects women more than men and runs an unpredictable course [1]. RA is characterised by periods of exacerbation when the disease is active and periods of remission when symptoms may be mild or absent [2]. The predominant symptoms of RA are inflammation, pain and swelling in the joints, fatigue and functional impairment. RA is associated with onset of serious co-morbidities such as cardiovascular disease and osteoporosis [3]. These co-morbidities account for a reduced life expectancy and are the result not only of the disease itself, but also of some of the medications use to treat the disease, such as oral glucocorticoids [2].
Address for correspondence: Dr Susan Baxter, School of Physiotherapy, University of Otago, 362 Leith Street, Dunedin 9016, New Zealand. Tel: +64 3 479 5479. E-mail: [email protected]
Exercise can assist in RA symptom self-management. Furthermore, exercise can result in increased participation in activities of daily living, maintenance of function, improvement in quality of life, as well as lessening perceived symptom severity [4,5]. However, symptomatic RA can be a significant barrier to exercise participation due to pain, stiffness, fatigue and disability, as well as associated co-morbidities, such as cardiovascular disease [4,6,7]. In contrast to general population guidelines, there are no specific guidelines by the American College of Sports Medicine (ACSM) as to activity level, type, frequency or intensity for people with RA. General advice is that some exercise is better than being sedentary and it is recommended that people with long-term conditions can obtain benefit by following the recommendations for the general population as closely as possible [8,9]. However, people with RA report a lack of guidance specifically tailored to their condition or associated co-morbidities [10]. This disparity between the detailed information available to guide the general population may be a factor influencing the low levels
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of engagement in exercise activities documented in people with RA [11,12]. In the past, people with RA were generally advised to engage in exercises involving isometric contractions, as these were thought to be safer to avoid the risk of further joint damage [13]. In addition, advice has been to use strategies to reduce energy expenditure during the day [14]. Such advice conflicts with recent research which has shown that people with RA can experience increased strength, better quality of life, higher cardiovascular fitness and reduced disease severity, without adverse effects on pain, as a result of engaging in regular exercise activity [15]. Although health benefits from exercise activities have been demonstrated in people with RA, many of the studies which have added to this evidence have been interventions requiring the supervision of a health care professional or personal trainer. Furthermore, these studies have failed to show long-term benefits or maintenance of benefits beyond the term of the study [16,17]. Previous research in other long-term conditions, such as multiple sclerosis [18] has identified disease-specific barriers and interpretive processes [19], which may influence engagement in regular exercise. This indicates a need for a clearer understanding of the facilitators and barriers which may be specific to people with RA. A recent prospective study showed an association between light intensity physical activities and a reduction in the risk of both onset and progression of disability in people with osteoarthritis. This study showed that the frequency of activity was more important than its intensity, and suggests that people could be encouraged into greater activity if negative perceptions about high intensity exercise and associated pain could be dispelled [20]. The aim of the current study was to explore the question: What are the perceived barriers, facilitators and attitudes to exercise in people with RA? A secondary objective was to capture opinions and perceptions about walking as a form of exercise.
Methods Design The design was constructed from the literature by the primary researcher determining the best qualitative approach to answer the research question. The primary researcher (S. B.) was a PhD candidate and also a fitness instructor and amateur athlete. The co-researchers are academics with expertise in fatigue (C. S., L. H., S. S. and G. T.), physiotherapy (C. S. and L. H.), rheumatology (S. S.) and health psychology (G. T.). A telephone interview study using the General Inductive Approach [21] to guide thematic analysis of the qualitative data was carried out. Semistructured interview questions were developed by the primary researcher to explore the attitudes, barriers and facilitators of exercise and physical activity in people with RA (Figure 1) using open-ended questions. The questions were developed around identified gaps in the current literature. The primary researcher (S. B.) practiced interviews and these questions on volunteers who did not have RA to ensure familiarity, translation and accuracy in interview processes. The questions seemed acceptable and relevant to the first participant in our study and no changes to the protocol or questions were deemed necessary following this interview. Inclusion/exclusion criteria Adults with a diagnosis of RA aged 18 years and above, with the ability to walk 200 m or more unassisted, were eligible for inclusion. Diagnosis of RA was confirmed by a rheumatologist. Participants were excluded where there was an inability to communicate in English, or if the individual’s ability to give
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informed consent to participate was impaired. Ethical approval was obtained from the New Zealand Lower South Regional Health Board in accordance with the Treaty of Helsinki (12/CEN/1). Participants Participants (diagnosed with RA by a consultant Rheumatologist) were approached in the rheumatology outpatient clinic of a New Zealand public hospital by the primary researcher and given a research study information sheet. Those who were interested were posted a consent form and a questionnaire requesting demographic details, including sex, age and vocation. Sampling was continued until saturation of the topic was reached and the same thematic information was being given by ongoing participants. At saturation point, no further interviews were scheduled. Eighteen people with RA were approached of whom eight agreed to participate (44%). Reasons for non-participation included not meeting the criteria for eligibility (n ¼ 4), already being involved in other projects (n ¼ 2) and vacations planned (n ¼ 3). One participant did not give a reason. All eight participants were women of New Zealand European descent, with a mean age of 62 years (range 56–82 years). Mean duration of RA was six years (range 5–29 years). Six participants worked part-time and two were not employed. The interviews lasted around 40 min, with a range of 30–84 min. Data collection On receiving the signed consent form and the completed demographic information questionnaire, an interview time was arranged. Telephone interviews were conducted at a time convenient to the participant using a Skype account to the participant’s landline telephone number. The interviews were recorded digitally through software in adjunct to Skype. Interviews were conducted via telephone to sample without local regional restriction as the outpatient clinic spans a large region of New Zealand. Furthermore, telephone interviews allow an element of anonymity that might be conducive to less response bias in answering questions within a group situation [22]. Once the interview was complete, detailed field notes were made to provide context for the transcription process. The audiorecordings were transcribed word for word by hand into word processing software and checked for accuracy by a second researcher. The process of transcription served as the first step of analysis and increased familiarity with the text. Telephone interviews took place within the space of four weeks of recruitment, with less than six days between initial interview recording and transcription. Analysis of the transcriptions commenced immediately once two interviews had been completed. This process then informed subsequent interviews using a constant comparison process. Data analysis The method of data analysis chosen was the General Inductive Approach as described by Thomas [21], which is recognised as a pragmatic approach in healthcare research [23]. The transcripts were read several times to identify groups of meanings or codes within the data that answer the research question about perceived barriers, facilitators and attitudes to exercise in people with RA. Codes were then organised into themes, in a three-stage process. The first stage of analysis involved coding the data immediately after every two telephone interviews. Data were managed using word processing documentation. Segments of text were reassessed and refined by adding a label to the codes, and these
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DOI: 10.3109/09638288.2015.1061602
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Questions for the Qualitative interviews Exercise is a physical activity that is planned, structured, and repetitive and has as an objective the improvement or maintenance of physical fitness. Physical activity is the act of movement of the skeletal system expending energy. 1.
What have you done in the past for exercise?
…. there are some people who think that people with RA should rest when experiencing a flare up or fatigue and pain and there are others who believe that exercise is still really important despite fatigue and pain…What are your experiences? 2.
What way do you think other people react to someone with RA who regularly exercises? Is this different from how people might react to other activities, e.g. reading? o
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3.
Friends, colleagues, family, doctors
What is your experience, for engaging in exercise? o
What stops you?
o
What motivates you?
o
What would encourage/ discourage you from exercising?
4.
What is your exercise preference?
5.
How much exercise do you think you would be capable of (duration, intensity, frequency)
6.
What would make participating in any form of physical activity or exercise most enjoyable?
7.
What stops PwRA from going on a walk as a form of exercise?
8.
What do PwRA tend to think about walking?
9.
What is different between walking and other forms of exercise you do? Would walking be more enjoyable, less enjoyable?
10. How many times a week do you think that someone with RA would/ should go on a walk? 11. Can you make some suggestions about how you might be able to fit walking into your day or your week? (Little but often? Or a few times a week?) Other suggestions: •
What are your thoughts about exercising and RA?
•
What would encourage/ discourage you from exercising?
•
What forms of exercising do you think would be best for PwRA?
•
What factors would encourage/discourage people from taking part in a walking programme?
•
What gains would you expect from an exercise program? (fitness or otherwise?)
•
Some people have mentioned that they might enjoy walking with other people, what do you think about this?
Figure 1. Questions for the qualitative interviews.
labels were refined and collapsed as necessary to reduce any overlap. Within these, the key themes in relation to the research question were identified from the text and the labels that were formed [21,24]. In the second stage, the preliminary analysis was independently checked by two other researchers (C. S. and G. T.) using the same methods, and instructions for coding and theming of the data. Any discrepancies were discussed and rationalised between checkers. In these initial two stages of coding, five preliminary themes were identified. Data were then analysed in the third stage by iterative discussion between the research team. Trustworthiness, rigor and verification For further verification and trustworthiness of the findings, an independent informant with RA was asked to review the research questions and the developed themes. This person was recruited in the same way as the main study participants, and the themes and answers were presented to them. The verifier did not suggest any
modifications or changes to the themes identified and agreed upon in the third stage of analysis.
Results After the third level of analysis two overarching themes were identified and agreed upon (1) social connections and (2) fear. The theme of social connections also had a component of fear (as in the fear of causing more distress to loved ones) as well as the immediate facilitative support from loved ones. The theme of fear incorporated three sub-themes (fear of the unknown, fear of the known and fears for safety). The development of a theoretical model from the themes can be seen in Figure 2. Several participants (4/8) also discussed walking as an exercise option before the topic was mentioned, and indications were given as to an acceptable level of exercise. The themes and their sub-themes are discussed below. Participants have been provided with pseudonyms; other
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Alice: and wait yes you maybe could do something that gets you moving like walking. Cindy: ‘‘if you had someone to go with you. If you didn’t have a dog, maybe a friend?’’
Social connecon Fear
Unknown
Safety
Known
Overall, social connections encouraged pursuit of exercise, especially if someone else was able to exercise with them despite the fear of causing distress to loved ones who worried about participants’ safety. Theme 2: fear
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Figure 2. The model of the two themes about barriers to exercise among people with RA.
masked details are explained within triangular brackets within quotes. The context, in parenthesis, for the quotes is also added. Theme 1: social connections The first theme, social connections was an integral part of all of the responses regarding physical activity, since participants said that they were often dependent (both psychologically and practically) on the support of their loved ones when engaging in exercise (5/8). In contrast, some participants were concerned that their participation in exercise would cause additional worry for their support person and this led to a reluctance to engaging in exercise (fear of causing more distress to loved ones): meaning that social connections could both act as a barrier and facilitator to exercise even within the same person. Participants indicated that the unpredictable nature of the condition caused support persons to worry that exercise might cause a flare up of symptoms due to over exertion. Empathy for the worry experienced by caregivers and support people as an additional stress beyond the nature of RA was also evident, especially given the confusion or lack of understanding of their physical capabilities both as a baseline capability and as a day to day indicator in lieu of markers of disease severity or pain. This was compounded by worries about creating concern and tension within the relationships. As Sally expressed: ‘‘You don’t want to put more on the people who are looking after you all day as it is’’. Heather reiterated this point by stating ‘‘People might be a bit worried. Or they probably would think it was good if it was a work out plan for them that ummm if someone had made it, a professional then it would be good for the person so people wouldn’t mind’’. Participants often mentioned the tension that the unpredictability of RA already brought to their relationships and were concerned that attempting to exercise would exacerbate this, as Nancy explains: ‘‘It was so tough as I wanted to do what I know I could do. But I just couldn’t. I would get into fights a lot with5my husband4 because of that. I was stressed and sad and then he would be stressed and worried that I had done too much’’. One issue identified was that the ability to share the activity with another person would facilitate physical activity or make it more enjoyable. Many participants had a positive attitude of willingness and desire to engage in exercise such as walking, particularly with another person or a dog.
The second theme was that of different aspects of fear which formed barriers to physical activity participation. In this analysis, fear is represented by three sub-themes: fear of the unknown, fear of the known and fears for safety. Within fear of the unknown there were two topics highlighted: the role of the health professional and the contrast of overwhelming information in relation to medications and treatments to the lack of specific information regarding exercise. Within the sub-theme fear of the known was the known complexity of the disease and the complexity of information presented about how to medically manage RA. Encompassing both fear of the known and fear of the unknown was fears for safety, which included experiences that the participant could acknowledge as being unsafe, such as geographical remoteness and inability to communicate should an accident happen, as well as not knowing just how severe the symptoms of RA could be on a particular day. Each of the subthemes will be discussed separately in the sections below. Sub-theme 2.1: fear of the unknown Fear of the unknown was generated by the unpredictable nature of RA. This concept included the fear engendered by knowing neither how, when or what to do to reduce the likelihood and severity of flare-ups, nor how to prevent further damage to their joints from the disease. Issues were raised relating to confusion around the health professional’s role, and also about the overwhelming quantity of information communicated to patients. For example, the different ways that medication could and should be adapted based on symptoms. Rheumatoid arthritis is characterised by periods of exacerbations and periods of remission. These ‘‘flare-ups’’ are unpredictable and are attributed to several different factors such as stress, cold weather, getting ‘‘run down’’ or ‘‘doing too much’’, and occasionally have no known cause. Emma describes how unexpected a flare up can be: ‘‘And just when you think you are right back on your feet again something like that 5a flare up4 knocks you for six’’. Fear of the unknown around exercise and not doing too much was specifically mentioned, with consequences of an earlier death, getting sicker and not knowing whether exercise difficulty was an indication of whether an exercise was deemed as inappropriate for them. Nancy summed this up by saying: ‘‘I knew what I could do and what I couldn’t do. Now I just have no idea. I mean I have asked the doctors and they say just do as much as you can’’. A further aspect of this fear of the unknown as expressed by participants is that there is currently little information or guidance about how people with RA might safely exercise in terms of level, type, intensity and duration of activity. Some participants were therefore hesitant to pursue an activity or an intervention that they worried might exacerbate the signs and symptoms of the illness, as Emma noted: ‘‘you know it’s hard doing certain things for exercise but is that coz its exercise or is that because I shouldn’t be doing it?’’
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DOI: 10.3109/09638288.2015.1061602
In contrast, one participant responded that, despite being aware that exercise was good for her, she did not think that anyone actually wanted to exercise, but they did it because they felt they ‘‘had to’’. A dominant feature of fear of the unknown was the information available on staying active and in particular specific details on recommended exercises which were not provided by healthcare practitioners. This was at odds with the overwhelming amount of information presented for managing the disease through medication. This fear of the known is presented in the following sub-theme.
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Sub-theme 2.2: fear of the known Fear of the known encompassed issues surrounding the treatment and nature of RA. Participants knew that exercise would be of benefit to them but that there were greater considerations with respect to the safety of exercises in their situation. They were also aware of the complexity of the disease (known) however that the disease had an unpredictable disease path (unknown) and this presented and created fear within a different sub-theme of fear of the unknown. Participants expressed the view that the general practitioner (GP) should be making exercise recommendations. This seemed to be in part due to a general perception that persons with a medical condition should consult with a GP before commencing a new exercise regime. It seemed a logical progression for some of the participants to feel that GPs would be the most appropriate health professional to advise with regards to exercise: If my doctor told me and said go and do x y and z I would do them but I don’t have that. (Emma) You always have to ask the doctor before you do itð. It sounds silly but I think it’s dangerous to be unfit and exercise. (Sally) This expectation contrasted sharply with how some participants described how GPs introduced exercise during consultation sessions. A typical description was expressed by Heather ‘‘I think that the doctor said something about staying active but she didn’t say whatð’’ This statement was acknowledged to be in stark contrast to the information presented on the medical management through pharmaceutical means. However, participants knew that they had limits on their activity, and expressed less extreme forms of exercise, such as walking above participating in marathons, for example Sally said: ‘‘If this, then this and reduce this and take this. It’s frightening to think about all of thatð. It’s a lot of advice and we both try to sit and remember’’. Emma felt the same ‘‘Well something not too intense? I wouldn’t say enter an ironman or ummmmð. But yes maybe swimming or you could go for a walk or ru (starts to say ‘run’)ð but that’s not for everyone if your condition is bad then maybe walk. Yes or aqua jog. Participants also felt that they could adequately determine the levels of exercise they were capable undertaking, such as how often they thought a person with RA could engage in activity and the most appropriate types of activity. A range of answers to this question was apparent, ranging from every day to a few days per week, with an average of 3–4 times a week thought to be an acceptable programme for themselves or others. Of note, some of the activities mentioned by participants were gym-based exercising, pool sessions, walking and running. Fear of the known was a sub-theme that acknowledged that whilst participants were able to participate in physical activity,
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that there was also known limitations that had to be imposed on physical activities due to the nature of RA. Sub-theme 2.3: fear for safety Fears for safety was a sub-theme that linked both fear of the known and fear of the unknown: in terms of environment for exercise (known risks), and in terms of tailoring exercise in response to changes in disease severity (unknown). Participants were able to identify that certain environmental aspects posed additional risks: such as fear of falling on the uneven terrain or inclement weather (known) isolated areas where immediate access to help was unlikely. Other unknowns surrounding safety included concerns around how much a person might be capable of doing on a particular day. The following two quotes illustrate aspects of safety from the perspectives of fear of the known and fear of the unknown. Nicole describes her fear of not knowing whether she will be able to walk back to her car after walking the dog: ‘‘Or sometimes I feel quiteð. Um incapable and helpless coz I know I am walking limping and when I can’t get back into my car or pick up the ball from throwing it around’’. Becca describes the known risk of exercising in a deserted location: ‘‘if there was a safe place withð. If there were people around not a deserted neighbourhood, not too many hills or dirty’’. Social connection appeared to be a linking factor that encompassed all of the areas of the themes, which was reflected in the model generated. Within the social connection there were also elements of fear: these were fears that could be identified (known) and also the unknown elements that a disease with an unpredictable disease course conveyed. Overlapping these elements of fear was fears for safety, again with elements of fear from the known and fear from the unknown. These relationships between social connections and fear in women with RA are illustrated in Figure 2. Overall, fear acted as a barrier to exercise participation. Specifically, fear of the unknown resulted in participants feeling unsure about whether exercise could help or harm their condition. Also, participants did not have any knowledge about the intensity duration and frequency at which they could safely exercise; fear of the known appeared to present an indirect barrier to exercise as participants had an expectation that their doctor (who could provide detailed and copious information about medical management) would be the best health care practitioner to provide advice about exercise, yet this was not the case. Woven through these sub-themes were known and unknown aspects of safety. Many participants were able to identify known aspects of safety and while this could be seen as an immediate barrier to exercise engagement, the identification of these immediate barriers might help participants with planning exercise activities. Unknown aspects of safety appeared to present the most difficult barriers, particularly when participants did not know how far they could push themselves and still be able to return home safely from exercise.
Discussion This study explored perceptions related to physical activity in women with RA, together with factors which may both facilitate and create barriers to an involvement in exercise to inform a feasibility physical activity intervention. This research was the first that has identified the primary perceived barriers to commencing exercise and the factors that people with RA believe affect ability to participate in exercise. Overall two key themes emerged: social connections and fear. Social connections related to two main aspects of consideration for the participant: there was the immediate support of loved ones, in contrast to the fear of
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extra fear caused to loved ones. Within the theme of fear were the distinct sub themes of fear of the unknown, fear of the known and fears for safety. The participants with RA were concerned that engaging in too much activity might compromise their disease outcomes negatively and result in an extra burden on their social support networks. This concern should be addressed in any future recommended exercise interventions for people with RA, in particular by addressing the fear of the unknown by making specific recommendations on type, frequency and intensity of exercise. Participants in this study reported that they were more likely to engage in an activity if there was someone with whom they could to do the activity with; this is also beneficial in adding a level of accountability and possibly in improving persistence with a programme. Prior questionnaire data from 154 people with RA indicated that despite high intentions, personal factors including demographic details can play a part in the adherence to and participation in exercise [25]. Social connections could be utilised positively by creating an opportunity for the participant to engage in activity with another person, such as a family member or a friend, or creating a network opportunity with a social walking group. The potentially positive influence of social connections is in keeping with outcomes from previously researched interventions. In a cohort study of people with RA (n ¼ 116), initial psychological distress was found to be significantly associated with high psychological distress 4 years later, and after controlling for all variables, social support was independently associate with lower stress [26]. Alleviating stress by activating support mechanisms could, for example, enhance exercise adherence in people with RA. Safety concerns surrounding the location for physical activity and walking can be addressed by assessing and evaluating the intended environment as recommended in previous research on older adults addressing mobility issues [27]. Walking was suggested by most participants (6/8) to be a desirable physical activity. The potential benefits of walking are that it could be easily understood by participants, and could exploit the support methods explored and suggested by participants in this study, as emphasised by the theme of social connections. Participants reported that social influences had both a positive and negative effect on participation in exercise, in regards to balancing uptake with not causing further worry or upset to caregivers. This finding is supported in a study by Snippe et al. [28], where overprotective behaviour by partners could act as a barrier to activities of people with chronic obstructive airways disease. Another advantage of walking is that it does not require expensive equipment and can be done in convenient locations, as long as they were considered safe. It has been shown that high compliance rates to physical activity are possible in older adults with RA in a long-term exercise programme [29] provided that satisfaction is perceived to be high, and that the exercise is accessible, affordable and fun [30], which participants in this study have indicated walking might be. There is a lack of evidence for benefit to fitness from light physical activities for people with RA to undertake (such as walking), despite research in senior citizens advocating that walking could be potentially the route to better health [31] and therefore a need for more research in this area. Considerations for such research include physical location, which was specifically mentioned as a barrier to exercise in the current study within the theme of fear for safety. Any exercise programme might need to address issues such as darkness, damp and dirt in terms of location, as people with RA often report that their symptoms are made worse by damp and cold conditions [32]. In creating a sustainable exercise intervention that required outdoor activities
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practical advice on rescheduling an alternative may be important to sustain regular exercise [33]. Patients often feel empowered when they can take control of their own illness and exercise may be seen as a positive step that individuals can take to enhance their own health [34]. However, participants in this study reported feeling overwhelmed by the plethora of information relating to their condition provided within an individual consultation. With a potentially complex physical activity intervention, it is important to consider separate consultations with a health professional to discuss how exercise goals could be achieved to prevent creating additional fear and stress. The contrast of depth of information in treatment interventions between exercise and medication could provide a possible reason for heightened fear about adopting exercise. This, coupled with participant concerns (or more importantly their beliefs on whether or not their fears have been addressed), has been shown previously to correlate with patient adherence with treatment procedures; these concerns are not only limited to pharmacological treatments but also lifestyle interventions [4]. This disparity and contrast in depth of information is consistent with research by Radford [35] where a sample of people interviewed with RA after initial and follow-up consultation advocated the need for involvement in selection of treatment (choice) and also support above and beyond simple information delivered to them on treatment. Another issue regarding treatment is self-efficacy: people with RA and other ‘‘long term’’ conditions often have poor selfefficacy in regard to their treatment (and physical activity), especially if they are newly diagnosed with the illness or if the condition has an unpredictable disease course [36–39]. Exercise could improve self-efficacy for managing the condition by the process of empowering people and increasing their confidence in their ability to adopt new health behaviours: which has previously been linked to both pain and quality of life in people with long term conditions [37]. Designing a low complexity intervention could help to alleviate patient concerns regarding the quantity and complexity of information delivered, while enhancing self-efficacy. A simple intervention that required little to no training or supervision might help to relieve tension and fear around engaging in exercise, which probably explains why participants in this study indicated that walking might be a beneficial exercise. A simple and effective way of addressing such fears in a clinical setting might be to provide specific detailed information to the individual on exercise targets: the number of times a week, and the intensity that should be experienced. Although such information should be succinct and easily assimilated by the person, it would be easy for practitioners to overlook such advice when the consultation may be dominated by more immediate demands of managing pain and symptoms of RA [40]. This would suggest an alternative approach to providing the necessary recommendations for exercise. Perhaps a patient education initiative would be beneficial to encourage an individual that visiting their GP is for medical help, and that referral to an exercise health professional with expert knowledge in RA is for specific help and guidance on exercise. Furthermore, the model developed from this research could be informative in assisting healthcare practitioners to understand the concerns and factors impacting decision making and behaviour in people with RA. Since fear and social connection have been highlighted as key factors, acknowledging their role in a consultation in regards to treatment may assist in alleviating some of the tensions caused and facilitate in prescriptions and recommendations around exercise as part of treatment. Better understanding of the concepts relating to patient centred care can be assistive in creating the best condition management strategies
DOI: 10.3109/09638288.2015.1061602
and better patient outcomes. Notwithstanding this, the results and incorporation of this model can potentially inform a wider RCT intervention for women with RA.
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Strengths and limitations The strength of this study lies in the qualitative design that explored in-depth the opinions and attitudes of people with RA. A limitation to this was that participants were volunteers and thus the opinions gained were from those people proactive enough to talk about their exercise, or lack thereof, experiences. Those people with RA that do not believe in exercise or physical activity may not have volunteered. A further strength of the study was that the findings were verified by a person with RA who was not involved in the interview process. Another strength of the study protocol was using telephone interviews, which provides a sense of anonymity for participants, and therefore may facilitate more honest answering than face to face interviews or focus group interviewing would provide [22]. This study was aimed at investigating the barriers and facilitators to exercise and whether walking was an acceptable intervention. A number of the questions led the participants to talk about walking for this reason, and thus the findings that walking was an intervention of choice may have been guided more by the interview process than by what participants truly believed. A study that explored the topic of physical activity more broadly may yield different results. Sample size and sex of participants might be a limitation. While our study was open to both men and women, only women volunteered to be participants. Although more women than men have a diagnosis of RA [1], we cannot assume that the experiences of women in our study are similar to those of men with RA and, it might be useful for future studies to purposively recruit only men in order to explore this further. Saturation of the data was believed to occur when there were a low number of interviews, perhaps due to the concise aspects to be determined in this study. If the full topic of RA and exercise was explored, a greater number of participants might be required.
Conclusions This study identified potential barriers for people with RA to participating in physical activity or exercise. In particular, the uncertainty of what type of exercise was recommended and how long and how often to exercise for were highlighted. Facilitators to exercise were considered to be immediate support of loved ones and having a safe environment to exercise in. Participants in this study considered that an acceptable exercise frequency was 3–4 times per week. Furthermore, participants endorsed walking as an acceptable physical activity for people with RA. The practical ways to address these barriers to exercise would be to ensure that succinct and direct guidelines on exercise type and frequency are provided, and that there was an incorporation of social connection in the physical activity by either encouraging others to join the person or providing opportunities for people with RA to incorporate walking with pets.
Declaration of interest The authors report no declarations of interest.
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