Abstract
Many people who have rheumatoid arthritis report low levels of physical activity. We conducted 17 interviews with people who have rheumatoid arthritis to gain insight into how they view physical activity and to explore how their levels of activity may be increased. Interviews were transcribed verbatim and analysed using thematic analysis. Four main themes were generated: being active, barriers and facilitators, information and advice, and supporting physical activity. A lack of information about being active fostered negative emotions limiting physical activity participation. Improved provision of physical activity advice is warranted to promote physical activity in people who have rheumatoid arthritis.
Introduction
Participation in physical activity has many benefits for people who have rheumatoid arthritis (RA). This includes improved cardiovascular health, strength, joint health and functional ability and also improves symptoms associated with RA such as pain, fatigue and stiffness and improved quality of life (Cooney et al., 2011). However, research suggests that the majority of people with RA do not participate in enough physical activity to achieve these health benefits (Manning et al., 2012; Sokka et al., 2008; Tierney et al., 2012). Thus, the promotion of physical activity behaviour for people who have RA is important in the management of this chronic condition and should be a primary concern for healthcare professionals.
Interventions to change behaviour such as to increase physical activity participation can consist of numerous interacting components and are referred to as complex interventions (Medical Research Council (MRC), 2008). Both the MRC’s (2008) framework for developing and evaluating complex interventions and National Institute for Health and Clinical Excellence’s (NICE, 2007) guidance on behaviour change advocate consultation with key stakeholders when developing a complex intervention. Consideration of particular issues such as any relevant contextual changes that may need to be made to allow for the delivery of a behaviour change intervention, and the level at which the intervention will be delivered, that is, individual, community or population (NICE, 2007). Patients have a personal experience of disease that is not available to most researchers, thus their unique experience complements researchers’ analytical skills and scientific perspective (Hewlett et al., 2006) and may help to ensure that the proposed research is appropriate and acceptable for the patient population (INVOLVE, 2012). Thus, it is vital that the views of both people who have RA are gathered to inform the intervention design.
To date, research in this area has explored the barriers and facilitators to being physically active in people who have RA and has been well documented (Baxter et al., 2016; Iversen et al., 2015; Law et al., 2010; Loeppenthin et al., 2014; Veldhuijzen van Zanten et al., 2015; Wang et al., 2015). Despite the aforementioned health benefits of being physically active, people who have RA report certain barriers to being physically active, including fear of exacerbating disease and uncertainty about the safety of being active (Baxter et al., 2016; Iversen et al., 2015). Despite such barriers, people who have RA also report benefits to being physically active, such as improved symptom management and increased social participation (Veldhuijzen van Zanten et al., 2015; Wang et al., 2015). This suggests that people who have RA may want to be active but there are known barriers to being active for this population. Limited research has been conducted to identify the requirements and wishes of people who have RA with regard to an intervention to promote physical activity, informed by their personal experience of having this chronic condition which is essential for developing complex interventions (Michie et al., 2011).
Thus, the aim of this qualitative study was to explore the views of people who have RA on the design of a future physical activity intervention.
Patients and methods
Study design
This was a qualitative study which used a constructivist approach to facilitate the exploration of the views and comprehension of the different participants within the subject context and recognises that each may have experienced a different understanding of the same situation (Charmaz, 2006). One-to-one semi-structured interviews were selected as the method of data collection as they provide data which can contribute to a body of knowledge that is conceptual and theoretical and is based on the meanings that life experiences hold for the individual interviewee (DiCicco-Bloom and Crabtree, 2006). Telephone was the medium preferred by patients for conducting the semi-structured interviews; this methodology has also been used successfully in similar studies (Patel et al., 2014; Swan et al., 2010; Walsh et al., 2009).
Sample and recruitment
Recruitment for people who have RA was conducted at outpatient rheumatology clinics in an urban hospital in the mid-West region of Ireland. Participants with a confirmed medical diagnosis of RA, according to either the 1987 American College of Rheumatology (ACR) criteria (Arnett et al., 1988) or the ACR/European League Against Rheumatism (EULAR) 2010 criteria (Aletaha et al., 2010), were identified from medical records and were approached by the primary author (L.L.). Potential participants, aged 18 years or older and who attended the clinic for a routine appointment between August and November 2014, were invited to participate in the study. Potential participants were provided with verbal and written information about the study. A total of 23 people who have RA expressed an interest in participating in the study. L.L. obtained a contact telephone number for each interested person. These potential participants were then contacted at a later date to arrange a suitable time for conducting the semi-structured interviews. Each participant provided informed consent, and the study was approved by our local hospital Ethics Committee.
Question development and reflexivity
Interview questions were developed from an extensive literature review on behaviour change interventions to promote physical activity behaviour in people who have RA (Larkin et al., 2015a, 2015b) and from previous qualitative research in this area (Law et al., 2010; Loeppenthin et al., 2014). The questions were subjected to discussion within the research team, which comprised two physiotherapists and a health psychologist. These discussions focused on the mix of general physical activity questions and the design of intervention questions in the interview schedule, open versus closed questioning and possible probing statements or prompts. The final question content was determined by the research team by reviewing again the primary aim of the study and ensuring that the questions were appropriate for this aim.
All interviews were conducted by L.L. The interview questions covered the following areas: physical activity and exercise recommendations for people who have RA; an introductory piece on the proposed intervention, that is, explained to participants that the authors hope to design an intervention which aims to promote physical activity; and what it may entail, that is, outlined that the design could take any form and mode, delivery of a physical activity component, delivery of a behaviour change component, the setting of an intervention to promote physical activity and support resources for the intervention participants. In addition, participants were asked about their understanding of physical activity and experiences about exercising with RA as part of the introductory, warm-up questions.
Prior to the interview, the interviewer explained the purpose of the interview and the process of developing the intervention and emphasised that the interviewee should feel free to express their opinions and views freely.
The interviews were conducted in two rounds. In the first round, 12 interviews were conducted, and transcripts were reviewed by the research team (L.L., S.G., A.F., N.K.). The team suggested the use of more probing and elaboration of patient’s experiences to add greater clarity to the data corpus. Thus, new probing method and elaboration of language for questioning was incorporated to the subsequent interviews.
Data collection and analysis
A total of 17 people who have RA were interviewed. Audio recordings from the semi-structured interviews were then transcribed. Each participant was offered a copy of their transcript to review. The participants were advised to amend the transcript if they saw fit. Once participants were satisfied that the transcript reflected their views and opinions accurately, the finalised transcript was included in data analysis. Preliminary data analysis was conducted concurrently with data collection, which enhanced understanding about the questions being asked and facilitated minor revisions of the questions (DiCicco-Bloom and Crabtree, 2006). L.L. also begun to identify that no new ideas were emerging from the data as the latter interviews were being conducted, indicating that data saturation had been attained. The analytical approach for this data was inductive thematic analysis, which was guided by published guidelines (Braun and Clarke, 2006). Investigator triangulation, that is, consultation and further analysis with other members of the research team, consisted of the involvement of three researchers in the analysis (Farmer et al., 2006). In seeking to promote integrity in the data analysis process, three transcripts were independently hand-coded by members of the research team in order to discuss and agree on the codes and interpretations (Mays and Pope, 1995). One meeting with the research team was arranged to discuss the dataset and develop consensus around coding and interpretations. This presents an important aspect of the iterative data analysis process. This can occur in many forms and in this study included discussion of the data and the resultant patterns, ideas and themes in meetings (Berger, 2013).
All data were entered in the NVIVO software and analysed using built-in functionality. The interview transcripts were read and re-read to familiarise the research team with the data. Notes were made and ideas formulated to facilitate coding. Coding was performed using the NVIVO software features. The research team searched for patterns, analysed and coded the data and generated sub-themes and themes. This was an inductive open and relational coding process where the codes were drawn from the raw information itself, and the themes were predominantly data driven (Maxwell, 2008). The themes were reviewed and discussed by all members of the research team at two meetings to check whether the themes worked in relation to the coded extracts and the entire dataset, thus generating a thematic ‘map’ of the analysis (Braun and Clarke, 2006). In order to improve the quality of reporting in this study, the 32-item checklist of consolidated criteria for reporting qualitative research (COREQ) guided the reporting of the study (Tong et al., 2007).
Results
A total of 12 females and 5 males participated in the study. Their mean age was 59.8 years (range: 35–83, standard deviation (SD): 12.5) and mean disease duration was 13.7 years (range: 1–47, SD: 15.3). Six people who expressed initial interest in participating later declined participation due to lack of time or lack of interest in the study. Four main themes were identified from the data and are described below. These along with supporting quotations are presented in the text as well as in Table 1.
Generated themes and sub-themes with supporting quotations.
RA: rheumatoid arthritis.
Theme 1: being active
Participants described their experiences of being active in daily life which resulted in the main theme ‘Being Active’. This main theme and sub-theme, Limits and pacing, encapsulated the participants’ understanding of physical activity, their perceptions’ that they could be active, their physical activity limits and being inactive. Most participants made a clear distinction between being physically active and exercising. This difference was described by one participant as:
Physical activity is everyday life really, getting up, getting dressed, showering … Cooking they are all physical activity aren’t they? … No they are different I suppose, exercise is going out and purposely doing something. (PwRA08)
Some participants discussed how they felt that being active was safe for them despite their diagnosis of RA. There were strong feelings that being active was important and the participants acknowledged the physical activities that they can do:
I always thought it wasn’t that I hurt myself more when I exercise, but seemingly that’s not too bad for me that once I know what I’m doing you know2. (PwRA07)
Being inactive and sedentary behaviour were seen as negative by many of the participants. They described the physical impact of sedentary behaviour, which often increased their symptoms of pain and stiffness, and also the negative impact being sedentary can have from a mental health perspective. One participant highlighted how being physically active promoted positive mental health, as it provided a daily focus and reason for being active:
You know what I mean because if you’re not moving your mind kind of it slows down … the longer you sit … the sitting is not an option for me. (PwRA13)
Limits and pacing
Despite commenting on how being active was important, participants also described how important it was to recognise their own limits, for example, ‘Maybe I push myself too much sometimes, you know, which I can be sorry for afterwards’ (PwRA04). This sub-theme was quite evident across all of the interviews, highlighting the participants’ need to pace their physical activities:
But not to overdo it, I think you know when to stop yourself and not to push yourself too hard. (PwRA02)
Theme 2: barriers and facilitators
In this theme and sub-theme, Beliefs and emotions, participants discussed the factors which facilitated their participation in physical activity, as well as identifying reasons why there were not physically active. There were several generic barriers to physical activity such as time and financial barriers, weather conditions and travel barriers mentioned by participants. Generic facilitators to being active included having sufficient time and having adequate pain control. A key barrier to being physically active was ‘having RA’. Participants described how having the diagnosis and living with the symptoms such as pain, stiffness and fatigue limited their physical activity:
Because you know some days the pain is so bad you just don’t know you know and I’m thinking how the hell am I going to get upstairs today. (PwRA08)
Beliefs and emotions
This sub-theme straddled both the barrier and facilitator aspect of this theme. Positive beliefs and emotions about being physically active were cited as facilitating the participants to be physically active, whereas those who discussed negative emotions and beliefs commented on how these limited their physical activity. Fear was a common emotion expressed by participants, who stated that they limited their physical activity as they were afraid that ‘overdoing it’ would result in aggravation of symptoms or increase joint damage:
Maybe if I did it more but I do be just frightened afterwards I’m going to be crippled up for the night do you know. (PwRA03)
In contrast, participants who expressed positive emotions mentioned both physical and mental benefits of being physically active:
It is important to exercise I think because you do feel better after it and to walk and that even though it might hurt, but still it’s good, do you know, the exercise is good. (PwRA17)
Location
This sub-theme also straddled both aspects of the main theme. Here, participants talked about the benefits of being active outdoors, while locating such a programme in a hospital setting was perceived to be very negative and gave the impression that they were still patients rather than people with RA. Most participants felt that a community or gym setting was a far more practical and accessible setting for an exercise programme. Of note was a comment from one participant who felt that exercising in a gym was intimidating:
I wouldn’t be so sure about a gym because unless it was a separate area in the gym, because do you know you’ve got all the fit bods in there. (PwRA08) I think a hospital would put people off a bit I think … you go to the hospital and kind of people … you know if you did say to someone, ‘Why are you going to the hospital? So what’s wrong? (PwRA02)
Theme 3: advice and information
This theme encapsulated the participants’ need and desire for accurate and appropriate information on physical activity. Just under half of participants gave specific recommendations for how active people who have RA should be, ranging between 15–60 minutes most days of the week. There was a lot of variation in people’s levels of knowledge, including health professionals which could be a cause for concern regarding prescribing physical activity as a key treatment. Moreover, they were consistent in their belief that experts should be the only ones who should be giving this information. The extracts below support this theme. ‘I said it to the doc and he didn’t really seem to know, he said it’s kind of everybody for themselves like, do you know it’s individual cases’ (PwRA14).
Well someone that’s professionally trained I presume, for safety … They’d have to know about both [RA and physical activity].
Participants also discussed how information should be provided or made available about their condition and being physically active. Some participants felt that a paper-based information leaflet would be preferable, whereas others felt that Internet-based information and the use of smart technology was the best option.
I’d say that would be good as well because a lot of people do go onto the internet before they ask questions, do you know, the internet is the first thing they go to so. (PwRA02) Probably in paper based form because you can tick it off and sort of try and memorise it. (PwRA12)
Theme 4: supporting physical activity
The fourth key theme generated from the data describes that resources would encourage or help with adherence to physical activity. Participants identified three key factors which aid people who have RA to be physically active.
Participants discussed the importance of having a goal or plan to be active. Participants who had set physical activity goals and achieved these goals also described their achievements:
I have been doing walking and I done my first 5K … It was great and I ran the whole 5K. (PwRA02)
Monitoring, commented on by many of the participants, could occur in many forms, either by a trusted source such as a healthcare professional or family member asking about being physically active, through the use of a diary or by having a reminder phone call or text message being sent to their phone. One participant described how she had attended physiotherapy and wished that the physiotherapist had checked to see how her home exercise programme had went:
And that’s something I think that the physiotherapist should be aware of and I think that a question like … but she never asked the question when I went back the following week. (PwRA15)
Being active in a group was described as being motivational and productive, and that by being part of a group, there was a motivation or obligation to commit to participating. Some participants commented on how being part of a group was a personal preference and that this option may not be palatable to everyone. Socialising was also cited as a factor which encouraged people to keep active:
I’d say a group would be better for me like you know … It’s very hard to do something on your own … A group, you can chat to people, you’re just doing things and you don’t realise it you know. (PwRA11)
Participants also spoke about the sources of support and the importance of identifying the need for and asking for help. While at the same time, being active for family reasons was also a keen motivator as illustrated below. Sources of support mentioned were primarily family or care assistants. This support assisted physical activities in different ways, such as being able to complete activities of daily living or being able to attend medical appointments:
Now I do have to rely of course on my family for taking me to the doctors and to the supermarket. (PwRA15) My kids are young so when they get a bit older like I’d like to be able to run around with them and play hurling and stuff like that with them … I suppose I don’t want to be crippled … and I’m not able to do it with them. (PwRA14)
Discussion
This study sought to explore the views of people who have RA on the design of future physical activity interventions. Four major themes were generated from the data, spanning the participants’ views and experiences of being physically active, factors which impeded or enabled their physical activity, their views on physical activity information and advice and other ways that physical activity can be supported for people with this chronic condition. Experiences of being physically active varied between participants; however, there was a clear message that at present, there is insufficient information and advice regarding physical activity being provided to people who have RA within this particular health service, which may or may not be specific to this health service. Thus, it appears that there is an opportunity to provide healthcare professionals with up-to-date knowledge on recommendations for physical activity for their patients who have RA. This, in turn, may translate to encouraging and act as a support mechanism to people who have RA to be physically active (Iversen et al., 2004; Veldhuijzen van Zanten et al., 2015).
Participants in our study not only described the physical activities they participated in but also acknowledged the importance recognising their physical activity limits and the pacing of their activities. Once again this suggests that there is scope for increasing knowledge and awareness of the recommended physical activity levels within people who have RA, while being cognizant of the practicalities of achieving these optimal physical activity levels in a population that experience symptoms such as pain and fatigue. Given that a recent systematic review has provided further evidence that being physically active is an important contributor to symptom management (Veldhuijzen van Zanten et al., 2015), it is essential that challenging negative beliefs about physical activity is targeted by healthcare professionals working with people who have RA when seeking to promote their physical activity behaviour.
In terms of a specific intervention targeting physical activity participation, the participants in our study mentioned a number of important points, some of which have already been discussed. These include the provision of information regarding physical activity and RA, relating to the safety and benefits, ensuring that the leader of such an intervention has adequate training in terms of understanding of being physically active with a diagnosis of RA and involvement of significant other to support physical activity behaviour. Novel aspects discussed by our participants included the location of such an intervention, mode of delivery and other methods of supporting physical activity. Goal setting and monitoring physical activity were also important factors for our participants. The importance of monitoring physical activity behaviour has been highlighted recently as a key feature in supporting physical activity (Michie et al., 2011). Interestingly, to date, this finding has not been reported in interventions targeting physical activity behaviour in people who have RA. Some participants suggested that a group setting may be the most appropriate environment, giving the many benefits of participating in a group such as the enjoyment of exercising with others and the positive social interaction of being around others who exercise (Wilcox et al., 2006). This is an important consideration for future interventions given the aforementioned importance of social support in supporting physical activity behaviour. When asked about the location of such an intervention, there was a strong feeling that it should not be in a hospital setting and all preferred a community-based setting. This was a novel finding, as many participants viewed the hospital setting as a negative location, associated with illness and being viewed as a ‘patient’. It is plausible to consider that the hospital setting may not be accessible and could act as a deterrent to people who have RA in attending a physical activity intervention. Thus, future interventions should consider a community setting for interventions targeting physical activity behaviour, given that it may be preferable for participants, may be more accessible to people and may facilitate the use of local amenities.
An interesting point about our study is that people who have RA do not receive adequate information and advice about being physically active. This lack of knowledge, in view of their chronic diagnosis, can lead to uncertainty and fear about how active they should be. As per previous research, a strong sub-theme which was found in the data was how influential beliefs and emotions about being physically active were (Baxter et al., 2016; Wang et al., 2015). Fear was most commonly referred to negative emotion within our study. Participants voiced their fears in relation to increasing symptoms such as pain, fear of causing further damage to their joints by being too active and a fear of falling due to balance issues, which in turn limited their physical activity behaviour. Similar results have been found by Baxter et al. (2016), as well as in the wider arthritis population (Der Ananian et al., 2006) and in other chronic diseases, such as multiple sclerosis (MS) (Sweet et al., 2013). This highlights how insufficient information regarding physical activity behaviour in activities of daily living and exercise can act as a major barrier to participation in physical activity for people who have RA and suggests an implication for future practice within the management of people who have RA. Thus, it should be established if healthcare professionals working both within and outside of rheumatology services are familiar with the recent evidence which shows that being physically active and exercising at high intensity is not harmful for people who have RA (Hurkmans et al., 2009; Law et al., 2015).
Given that research has demonstrated that people who have RA are less likely to engage in exercise if their rheumatologists do not discuss exercise regularly during the clinical visit (Iversen et al., 2004), it should then be established if healthcare professionals encountering people who have RA are providing advice and information regarding physical activity and exercise on a consistent basis. A survey exploring Irish physiotherapists’ practice in relation to physical activity promotion for people who have RA indicated that only one-third of those surveyed recommended high-intensity exercise and two-thirds reported that physical activity is safe for people who have RA (McKenna et al., 2014). Similar findings were reported by Munneke et al. (2004), who found that rheumatologists and physiotherapists in the Netherlands were less positive towards high-intensity exercise. Iversen et al. (2015) also found that rheumatologists reported a certain level of discomfort about discussing exercise which resulted from a lack of knowledge and confidence in prescribing exercise and uncertainty about the safety of high-intensity exercise for people who have RA. As advice and support from medical/healthcare professionals is a key facilitator to physical activity in people who have RA, this is concerning (Veldhuijzen van Zanten et al., 2015).
It appears to suggest that there is scope for increasing the knowledge of both rheumatologists and healthcare professionals about the safety and benefits of physical activity in people who have RA and for the provision of resources which may support this practice. Moreover, given that the participants in our study emphasised the importance of receiving advice from a trusted source, such as healthcare professionals, it is not only logical but also appropriate that physical activity advice should be provided in healthcare encounters. Interestingly, receiving physical activity from a credible source has also been highlighted as important for people who have MS (Sweet et al., 2013). In addition to healthcare professionals, participants in our study mentioned family members as trusted sources of information, suggesting that involving family members or significant others in such healthcare encounters may be beneficial in supporting people who have RA to be active. As social support has been identified previously as something which can encourage and facilitate physical activity behaviour (Baxter et al., 2016; Der Ananian et al., 2006; Loeppenthin et al., 2014), involvement of significant others when promoting physical activity behaviour is important. This was highlighted in the Swedish physical activity in rheumatoid arthritis (PARA) study, where lack of social support from family and friends was related to non-participation in that physical activity intervention (Nordgren et al., 2013).
Although some participants cited negative emotions regarding physical activity, others described their positive views on being active and the benefits this has for them, both physically and mentally. These positive emotions have been echoed in previous research (Der Ananian et al., 2006; Loeppenthin et al., 2014), suggesting that being physically active for people who have RA is highly feasible. As beliefs and emotions were stated to influence physical activity participation, it is important to acknowledge that beliefs about being physically active can be altered, reformed or strengthened. This represents an important opportunity for healthcare professionals when seeking to promote a particular behaviour, such as physical activity, through the means of motivational interviewing, education and other behaviour change techniques (McGrane et al., 2015; Michie et al., 2013). It is essential that such beliefs are addressed prior to and/or as part of an intervention to promote behaviour change. This also highlights the importance of involving key stakeholders in the design and development of complex interventions, as proposed by the MRC framework (MRC, 2008), as it identifies potential challenges which a primary research may not consider.
The limitations of this study should be acknowledged. Initially, focus groups were selected as the method of data collection, but due to a lack of interest and barriers such as time and lack of access to a focus group location, the authors decided that the telephone semi-structured interview was the feasible method of data collection and also the method preferred by potential participants. The authors have strong physical therapy and health psychology backgrounds, and this influence should be noted as it may have played a part in the analysis. The physical activity levels of participants were not explicitly explored, and this may influence the findings as there may be a variance in views of those who are currently physically active and those who are not. Generalisation of these findings to the general RA population may not be appropriate but should provide an insight into the views and preferences of people who have RA with regard to physical activity participation.
Conclusion
Reflecting on this study, it is evident that people who have RA have varied views on being physically active. There is a lack of information and knowledge about being physically active when having RA, which contributes to uncertainty and negative beliefs about being active. Thus, there is a need for increased provision of advice regarding physical activity to both people who have RA and healthcare professionals and scope to further support physical activity in clinical practice. The study findings highlight the importance of involving key stakeholders when designing future physical activity interventions as such contributions can help to ensure that such interventions are successful.
Footnotes
Acknowledgements
The authors thank all of the patients for their participation in this study.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research is supported by the primary author as part of postgraduate degree.
