|Home | About | Journals | Submit | Contact Us | Français|
Self-management is a key policy initiative in many western countries, and most approaches are designed for people with long-term conditions based upon giving support and advice in order to manage the impact of the condition(s). Less attention has been paid to what people already do themselves. In this paper we focus on the meaning and enactment of self-management in everyday life and the hard work associated with devising and maintaining routine adaptive strategies. This UK-based qualitative study examined how people live with knee pain. From the interviews (22 at baseline, 15 at 6 months) and monthly diaries, it emerged that self-management could be based on implicit and incremental learning from experience or on explicit evaluation of actions. Either way, embodied and emotional hard work was involved in maintaining a daily life that allowed people to fulfil social roles and relationships. This individual and contextualised work needs to be recognised and drawn upon before specific self-management approaches are promoted.
Policy-makers in many western countries have promulgated the concept of self-management as a cornerstone in modern health care. This is presented as people's desire to being empowered to take care of their own health (Department of Health, 2010) but, in contrast, its centrality in policy can be interpreted as a driver to reduce demand (Poortinga, 2006). A considerable body of research has accumulated assessing the claims of self-management. First, the term tends to be used in many different ways and is often interchangeable with the term self-care. The most commonly used term defines self-management as
individuals making the most of their lives by coping with difficulties and making the most of what they have. It includes managing or minimising the way conditions limit individuals’ lives as well as what they can do to feel happy and fulfilled to make the most of their lives despite the condition. (Department of Health, 2008)
Secondly, individuals with chronic conditions generally do not use this terminology and Kendall and Rogers argue that it is not a purposive action that stops when people consult formal health care. Rather, medical care operates alongside what people do for themselves (2007), and the “work” required to manage a long-term illness has been highlighted by Corbin and Strauss (1988) and Bury, Newbould, and Taylor (2005). They distinguish between “illness work” that includes managing one's symptoms and preventing crises, “everyday life work” encompassing daily tasks such as employment or childcare, and “biographical work” that involves making sense of the impact of illness on one's sense of self (Bury et al., 2005). Building on these concepts, self-management can be better defined as the mobilisation of resources and the maintenance of normal activities and relationships in the face of an altered situation (Rogers, Lee, & Kennedy, 2007). Third, health care practitioners have a more instrumental approach to self-management as a way to share responsibility with patients (Blakeman, Macdonald, Bower, & Gatley, 2006). A recent study found that the topic of self-management in primary care consultations was constrained because health care professionals wanted to protect the relationship of self to the other; that is, they avoided topics that could create tension and endanger the longer-term doctor-patient relationship (Blakeman, Bower, Reeves, & Chew-Graham, 2010).
Claims that self-management is a new concept can be countered when looking at the literature on chronic illness (Bury, 1991; Charmaz, 1983; Faircloth, Boylstein, Rittman, Young, & Gubrium, 2004). From that it becomes clear that people develop strategies to cope with disease symptoms and their impact on everyday life, and that these include sophisticated decision-making about the use of health care alongside self-management. Furthermore, they carefully balance the interplay between the professional and lay systems.
In this paper, we focus on the meaning and enactment of self-management in everyday life. Knee osteoarthritis (OA) is used as an exemplar, because it allows for comparison with chronic conditions generally, showing both similarities but also important differences related to the nature and meaning of the condition. Like many chronic conditions knee OA has consequences for people's everyday life and to their biography in relation to symptoms. Simultaneously, people consider OA as part of normal ageing rather than a disruption to biography (Sanders, Donovan, & Dieppe, 2002) and many older people with OA actually rate their health as “good for their age” and thus do not necessarily see the condition as an illness (Grime, Richardson, & Ong, 2010). In the case of OA many people do not consult health care professionals because they feel that little is offered in terms of effective treatment, particularly if their joint pain is classed as “wear and tear” by health professionals (Gignac et al., 2006) or because they make a clear distinction about “normal” pain and symptoms that can be managed routinely (Grime et al., 2010). The way in which OA is conceptualised by the people who suffer with joint pain sets it apart from other chronic conditions in that they are more inclined to see self-management as a normal strategy that is integrated within their daily life (Morden, Jinks, & Ong, 2011). This may lead to obscuring the actual hard work that is involved in living with the disruptive aspects of the condition and our paper attempts to surface this work, and how it is similar or different from that required in chronic illness generally.
In order to provide a conceptual framework we first discuss the notion of the “work of self-management” as part of this introduction, followed by an explanation of the empirical study on which our argument is based. A detailed analysis of the way in which people develop and operationalise self-management using their accounts is then provided, drawing on a number of theoretical concepts from the social science literature. We will end with arguing that the emotional and embodied work involved in self-management needs to be recognised alongside the other types of work already identified by Corbin and Strauss (1988) and Bury and colleagues (2005) and how this specifically relates to knee OA.
The work associated in living with chronic illness has already been discussed (Bury et al., 2005; Corbin & Strauss, 1988). May (2006) and May, Montori, and Mair (2009) further elaborated upon this with the notion of “hard work,” meaning that managing the everyday impact of disease alongside engagement with health systems and treatments can be disruptive to people's lives and requires work to prioritise and maintain order. Belgrave (1990) highlighted that management regimes for chronic illnesses consume a lot of time and effort and can leave people with little time or flexibility to do other things (Belgrave, 1990). Thorne, Paterson, and Russell (2003) break down the various components of “every-day self-care”: managing the social context, such as shaping social interactions; managing lifestyle, including choices about maintaining health and well-being; managing prescribed treatments; managing health care encounters. They argue that self-management involves a complex process of deciding what is meaningful in life, and weighing up expert advice and expectations against what they themselves consider makes sense based upon past experience. Therefore, the business of self-management needs to be understood within a person's overall life context, desires, and aspirations. This argument is reiterated by Townsend, Wyke, and Hunt (2006) who emphasise the influence of social and cultural factors on choices and behaviours and that illness management work is informed by moral guidelines.
Atkin, Stapley, and Easton (2010) develop further important insights building on the understanding that much of self-management happens outside of the health care system and should be placed within the wider context in which a person's condition assumes meaning. They make a plea for a more pluralistic approach that recognises how people adapt to their illness and that notions of coping are socially negotiated. This links in with the work by Lindsay (2009) who similarly underlines the variety of individual trajectories. She recognises that the different patterning of chronic illness and multi-morbidity potentially presents individuals with competing demands on their self-management resources. Thus, people may not only need to prioritise between conditions but also the deployment of their resources (Lindsay, 2009). Again, what is highlighted by this study points to the complexity of the illness experience and the decision-making associated with it.
The contextual approach to self-management has begun to recognise the role of social networks and whether they are facilitative or inhibiting. A review of self-care support initiatives for older people (Berzins, Reilly, Abell, Hughes, & Challis, 2009) concludes that supporting carers may be equally important as supporting individuals if self-management is to be effective. Piette (2010) takes this further when he states that individual self-management is a misnomer since in many cases care is shared with families and social networks. While this may confer benefits, it also requires negotiation and alignment of expectations (Piette, 2010).
Many of the above studies mention explicitly that the burden of self-management can be heavy, underlining the notion of hard work. This hard work falls within the domains that Bury et al. (2005) and Corbin and Strauss (1988) define: illness work, everyday life work and biographical work. Moreover, Reeve, Lloyd-Williams, Payne, and Dowrick (2010) have drawn attention to the importance of not only relying on the narrative account of illness but to include the emotional and embodied experience; that is, how a sense of self and well-being is mediated through the gamut of emotions in a lived body (Bendelow, 2009). Thus, they focus on the individual, creative capacity that can be enhanced or depleted by events taking place while living with a chronic condition (Reeve et al., 2010). Drawing on the material from our own study and the relevant literature we intend to unpack the nature and form that this hard work of self-management takes.
The aim of the project was to explore the experiences, beliefs, and attitudes of people with knee osteoarthritis who are deemed to self-manage. A key part of this investigation was to gain an in-depth understanding of the nature, meaning, and consequences of self-management in people's everyday life and it is within this context that the notion of “hard work” emerged. A longitudinal, qualitative design, using in-depth interviews at baseline and follow-up and participant diaries, collected over a 6-month period was undertaken. This enabled the meanings that people give to their chronic illness and self-management to be revealed.
The qualitative sample was drawn from an existing population-based cohort study (NorSTOP). This is a longitudinal study of joint pain in adults aged 50 and over. We used the 6-year follow-up survey (mailed in 2006) to draw a sample of people who had not consulted for the last 12 months and who had indicated that they suffered from moderate to severe knee pain. An equal number of people who were and were not engaged in some form of self-management were included. For the purposes of sampling, self-management was defined by using the National Institute for Health and Clinical Excellence (NICE) guidelines for OA (National Institute for Health and Clinical Excellence, 2008). Self-reported data from the 6-year follow-up survey was examined to identify whether an individual utilised any of the recommended options. One hundred and twenty participants were identified and invited to take part in the study.
Twenty-two individuals agreed to participate, while over the course of the study seven withdrew. Table 1 provides the key characteristics of the sample. The geographical area in which the research was carried out is not ethnically diverse and comprises of a stable population. The participants can be considered as typical of those suffering with knee pain in terms of age and levels of co-morbidity (Kadam, Jordan, & Croft, 2004; Peat, Thomas, Wilkie, & Croft, 2006). Participants who withdrew from the study cited various reasons including loss of interest, time constraints, and ill health.
Three stages of data collection (December 2008–August 2009) were employed. Participants were interviewed using a semi-structured approach. They were also offered the opportunity to take part in a diary study for the 6 months following the baseline interview. This provided an alternative avenue for participants to express themselves and potentially allowed access to real-time, mundane accounts of daily life (Milligan, Bingley, & Gatrell, 2005). Furthermore, seeing the world from the perspective of the social actor (Alaszewski, 2006) was central to our concerns. The diary was to be filled in for 1-week of the participant's choosing, each month, for 6 months. A potential problem was that people might choose an extraordinary week or one which was particularly “calm.” In reality, people wrote whenever they liked (odd days here and there). Accounts often shifted temporally e.g., updating on key events that contextualised the “now.” A set of prompts were included with the diary to offer suggestions and direction to participants. Diaries were posted back to the researchers each month. Some participants were unsure what to write given the open nature of the diaries and it was difficult to offer detailed advice as people often seemed concerned about being “right,” perhaps preferring concrete instructions. The researcher tried not to lead and be too specific. The quality of the diary material varied due to the differing styles and amounts of information people provided. First, interview and diary data were analysed and used to inform a follow-up interview at 6 months for those participants who were happy to do so. All interviews were conducted by one member of the research team (anonymised).
The local research ethics committee approved the study. Responders to the survey questionnaire who had ticked a box giving consent for further contact were sent an invitation letter and information sheet about this study. The letter provided contact details for the lead researcher and asked people to ring if they wanted to participate. A suitable time and place (usually their home) to conduct the first interview was agreed. Before starting, written consent was obtained and the opportunity to withdraw from the study was always available. This was reiterated at various other stages of data collection. Sometimes upsetting events or periods in the participants’ lives were recounted, so care was taken to ensure that data collection was not unnecessarily intrusive. Potentially identifying information relating to participants was removed from the data.
Interviews were professionally transcribed verbatim. Transcripts were checked for accuracy by the interviewer. Analysis was carried out using two approaches: first, the constant comparative method (Charmaz, 2006) based upon data collection in “batches,” whereby the first batch is analysed in order to inform the data collection for the subsequent batch. In this study, the first data set consisted of the baseline interviews, the diary series comprised the second batch, and the follow-up interviews were the final one. The 6-month interviews were designed following analysis of the first interview and completed diaries in order to further explore emerging themes and to fill in gaps in knowledge. The method involved repeated comparisons of text segments through coding, recoding, and memo writing in order to generate themes and concepts. This process of comparison was aided by an initial separate analysis of a couple of transcripts by all team members, followed by team discussions to arrive at an agreed coding framework. Continuous team analysis strengthened interpretation and integration of the datasets. Second, both in the interviews and the diaries a number of illness “stories” were told. In the second half of this paper we focus on the story of one participant and have drawn on concepts from narrative analysis (Riessman, 2008) and, in particular, we use the notions of core and moral narratives as developed by Bury (2001). Furthermore we look at this story within its social context, highlighting the significance of the person's social network and his associated role (Coffey & Atkinson, 1996). The NVivo 8 data management system was used to facilitate analysis.
The presentation of the material below is first structured around a number of themes that bring together aspects of the work of self-management and, second, a complex and comprehensive narrative account illustrates the interconnections between self-management strategies. Thus, comparisons across the whole dataset are made, but a more fine-grained picture drawing together the key themes will emerge from the storyline of one participant who kept a meticulous 6-month diary.
Reeve and colleagues (2010) propose the notion of “biographical flow” where people (in their study these were cancer patients) were concerned with maintaining continuity of daily life through expending a considerable amount of embodied and emotional work. They argue that managing the physical impact of the condition can require constant effort and remaining motivated and resilient demands individual creative capacity. Similarly, individuals’ need to retain autonomy through constant adjustment of their perceptions of themselves and the limitations posed by their condition in their interaction with the world has been highlighted by several authors (Mars, Kempen, Widdershoven, Janssen, & van Eijk, 2008). In the case of joint pain this tends to develop over time, rather than be the result of a specific event or injury, and a specific diagnosis such as osteoarthritis emerges some way along the pain trajectory and change is experienced more gradually. This process may be covered by the term “emergent present,” which Griffiths and colleagues 2010 define as a persistent pattern of adjustment and adaptation. Thus, the more implicit, organic experiential learning should be considered alongside the explicit, evaluative accounts. Our study suggests that the participants employed both approaches and examples of “learning from experience” are presented here, while the second approach will be covered in the next section.
Kneeling was an action that caused problems and people tended to avoid doing this or find solutions. Especially for those participants who wanted to garden, the use of aids was the preferred option. For climbing stairs, much less possibilities for adjustment existed. People talked about going up and down the stairs on their bottom, holding onto rails with two hands, or changing one's body movement:
When I'm coming down, I have to keep that leg straight. When I bend it, that's problem […] I tend to throw this leg out so that it doesn't bend […] When there's pain somewhere, you'll adjust to cope with it. (1387)
Adjusting speed was a common approach, and people talked about reduced walking speed, getting up slower, or taking more time to complete tasks. A common response was that people moved more deliberately, which caused them to accomplish tasks at a slower speed (Richardson, Ong, & Sim, 2008).
Issues were raised that might appear minor, but once explained it became clear that they were of real significance. One such example was car parking:
I have to try and look for good spaces on car parks. It's no good me parking quite close to someone […] I can't get out […] Whereas before I would have stuck one leg out, limbo-ed out sort of thing and got out the car. I can't do that. It's everything in your life. (805)
The simple task of parking had become a daily worry because this gentleman could end up stranded, unable to get in or out of his car. He did not exaggerate in the final statement that everything in his life was affected by his knee pain because he needed to think about the implications of all his actions.
The incremental adjustments to their daily life that all participants talked about were based on learning from experience and experimentation. Numerous examples were provided covering a wide range of areas that were affected by people's knee pain. By reflecting on these changes, people were able to retrospectively acknowledge the learning that had taken place. The desire to carry on with valued activities was an overriding theme and devising new strategies was central to this. Many people talked about movement as being good for their knee joints (Morden et al., 2011) and that they experimented with the amount and the intensity of movement needed, intervals between sitting and moving, and optimising conditions.
Nearly everyone experimented with aids and adaptations, figuring out their effectiveness and the circumstances under which they needed to use them. This gentleman explained how he was first advised to use knee-pads when on a tiling course. He now puts them on working in a supermarket:
T [supermarket chain] don't provide them [knee pads]. I'll go and get my own and they're in the car. I take them in at work. (805).
Past experience taught him that the knee pads provided protection, and thus applying the same approach to his current job helped to judge when he should put them on. Moreover, his employers noticed that he needed the knee pads and started to remind him whenever they moved him onto certain jobs.
The learning aspect was implicit in most accounts, but with only a few people mentioning the notion of learning explicitly:
Yeah, it's a matter of learning how to manage the pain and also to, well … in a negative way, to anticipate. ‘Cos if the weather was particularly going to be bad, then I anticipated that I would expect to get more discomfort. So you would look, you know, you would sort of, if you want, mentally prepare yourself for it. (4580)
Thus, mental preparation supported any physical adaptation that was required. He also used distraction techniques of staying “mentally busy” and “putting a compartment in our mind and just let something else come in.”
People with chronic conditions want to continue with valued activities and this is a recurring theme in our study. Elaborate routines were devised to participate in social interactions with family and friends, to keep hobbies, or stay in employment. Seven of 22 participants were employed, either full-time or part-time, and not all discussed the adjustments they made at work. However, changes to social and leisure activities were recounted in more detail. Spending time with grandchildren was a source of joy, but it could also be exhausting, such as playing football for which “I have to gear myself up” (6486).
Going on holidays could exacerbate pain, especially when it involved long journeys or taking part in specific activities. One way to ensure that pain was managed in order to enjoy the holiday was outlined by the following participant:
I just used a bandage, took loads of ibuprofen, loads of anti-inflammatory and half a bottle of wine every night (laughter). I mean, there's no point ruining the holiday completely, is there? (5888)
The concern was not just for herself, but importantly, for the others with whom this participant went on holidays. Being able to partake and contribute to shared enjoyment was a key consideration and signified her role within her social network.
Assessing the costs and benefits of a pleasurable activity was another strategy that people used. Experience told them that engaging in certain pursuits could aggravate their pain; however, the psychological or social gains derived from this engagement could outweigh the benefits. Thus, people talked about continuing to walk for pleasure, such as rambling or going round garden centres. A typical phrase was “I still get pain, but I still walk,” thus acknowledging the conscious choice to continue doing things and that suffering pain as a consequence was worthwhile.
Furler and colleagues (2008) argue in their study of diabetes patients that individuals’ social and emotional context shapes how illness is conceptualised and managed. Recognising the emotional base of the construction of self-management allows for a deeper understanding of the way people live with and respond to their chronic condition. Bury (1991) refers to coping as the cognitive processes whereby an individual learns how to tolerate or put up with the effects of illness; strategy is what people do in the face of illness, including mobilising resources or setting realistic goals; and style refers to the way people respond to and present important features of their condition or treatment regimes. Elements of all three are present in our examples with people continuing activities despite pain (putting up with impact), using aids and adaptations (resources), redefining goals and mental attitude (style). Importantly, while the changes are incremental, the embodied and emotional work involved is substantial, especially when weighing up costs and benefits of making certain choices. Accepting the consequences was illustrated by reference to increased pain or mental distractions, each of which required expending effort and energy.
The issues drawn out by this analysis have much in common with other chronic conditions, but the overall context differs in that it is shaped by the way knee OA is perceived by people themselves. Because knee pain is considered to be part of normal ageing and is not seen as a medical condition that requires professional help, self-management tends to be viewed as normal and integrated in everyday life decisions. Thus, the emphasis subtly shifts from managing the condition (with knee pain not being classed as a medical one) to getting on with life, which means maintaining valued activities that are core to identity and social role (Grime et al., 2010). This focus on the everyday means that most people do not consider their decisions and behaviours worthy of special mention and, thus, self-management does not surface as deliberate action (Morden et al., 2011). Consequently, the actual effort and work that is expended in carrying on as normal despite the knee pain tends to be obscured.
Thus far we have illustrated the organic processes of adjustment, but these do have an underlying thread that can be labelled “planning.” This encompasses the fact that people are never free from pain, and that managing this on a daily basis requires continuous re-evaluation of strategies to minimise the impact on their physical and mental well-being. This leads to an ever-present need to consciously plan one's day against an assessment of current levels of pain and the environment and relationships within which one is to operate. This corporeal reality shapes people's evaluation of context and their emotional responses. In order to explore the more explicit process of calibration of a range of factors we proceed to present the case of one person who not only has knee pain, but pain in other sites, which is a common pattern for many people (Arthritis Care, 2004).
The participant (376), whose account forms the basis for the following analysis, is a retired gentleman (James) who worked in a skilled manual job. He had an accident at work that signalled the start of spinal pain, which over the years led to general joint pain. He received a lot of medical treatments and physiotherapy and now uses walking sticks and at times a wheelchair. In the baseline interview he describes that he has pain
“everywhere, more or less - in every joint, I should think, I've got pain, but it isn't always severe. It is always there, but it isn't always [severe]. Some parts of my body might be more severe.”
The fluctuations in pain depend on factors such as weather, levels of exertion, specific activities, and so on. In common with many of the participants he does not only suffer from knee pain, and this reflects the pattern in older people where co-morbidity occurs more frequently than single morbidity (Kadam et al., 2004; Peat et al., 2006).
After the first interview we asked participants to complete a diary once a month, covering a week of their own choice. Furness and Garrud (2010) argue that solicited diaries have value as they allow the recording of thoughts and feelings before and after events. In our study, participants’ reflections in (near) “real-time” were important as they provided insights into people's everyday decision-making, and the role of self-management. James wrote in a very detailed manner for 6 months, and his narrative conveyed the complex interplay of physical, psychological, social, and environmental factors. James presents his core narrative (Bury, 2001) and expressed this sentiment in a particular way when he wrote in his first diary “I want to keep as mobile as possible for myself and for my family.” His moral narrative was derived from his fight to maintain mobility in that he redefined himself from worker to a family man: “my main job now is running about with the grandchildren” and his actions were shaped by how he saw his obligations as a grandparent. The excerpt from the first diary described a daily routine:
Had breakfast and did the crosswords, then had a shower. Knees hurting quite a lot today, so after my shower I rubbed them with Radion B. It is mainly for muscle pain, but I try all sorts when the pain gets this bad […] Today we have to go food shopping […]. Also in a big store like T. I can use my wheelchair. Then if it is cold or wet I have to use a blanket to cover my knees as they are more exposed to the weather. Luckily I can still drive the car, but I have to have one that is high off the ground. […] Our grandson rang to see if he could stay with us over the New Year. He stays with us quite often and we love his company. The only trouble is that he thinks I am 12 years old too, and he wears me out. He arrived at about 7 pm complete with laptop and games console. Went to bed after midnight utterly exhausted, but happy and in a lot of pain. (31 December 2008)
James's self-management consisted of: first, an assessment of his knee pain and the treatment that is required, which he has decided upon after a long period of experimentation. Second, the tasks for the day determined his use of aids such as the wheelchair and his specifically chosen car, i.e., the mobilisation of resources (Bury, 1991). He also judged the weather, which resolved whether or not he needed to take a blanket to keep his knees warm thus preventing further pain. His grandparent role gave him a lot of pleasure, but he also worried about the impact that playing with an energetic grandson has on his energy and pain levels. The next day's entry read: “I am determined that my pains, whether they may be in my back, knees, neck, arms or anywhere else are not going to stop my wife and I enjoying the rest of our lives.” Here he clearly emphasised the importance of “biographical flow” (Reeve et al., 2010) as connected to his social relationships as husband and family man.
One of James's key sources of enjoyment was fishing with his grandson and all his diaries described these trips in much detail, with preparation starting the day before when he “gets as much rest as I can before he [grandson] comes”:
This morning I woke early having had a good night's sleep, not too much pain, just a little in my legs and back. No more than usual, so I guess the fishing is on. I get my breakfast early so that I can load the car ready. By the time I had finished loading I had enough, but I must go on with it. When we arrived at the fishing venue I was relieved to find that I didn't have many yards to walk, so I set up my chair first, the most important piece of equipment for me. A nice sit down while I am setting up my tackle is just what I need. What with my thermal suit and my comfortable chair I was all set for a good day in the fresh air. About lunchtime my back was really giving me some jip. Had I been by myself I would have packed up and gone home, but I didn't want to disappoint my grandson. I just took a couple of painkillers and carried on. […] I finished up with a very painful back. We started to pack up at 5 pm, I really had enough by then, but it took us at least half an hour to sort everything and packed away. I took my grandson home and by this time I was in agony and I still had to unpack the car and wash the gear off […] I was shattered, so a nice hot bath and a back rub and an early night was in order. (7 March 2009)
In order to manage a whole day's fishing in the expectation that he will suffer pain and tiredness James planned in advance. He had sufficient rest the day before, rubbed in his muscle gels after his shower, dressed warmly, took his painkillers and special chair. He often did “research” on the location so that he did not have to walk too far from the car park. He recounted getting pains in the course of his day out, but as he said, he did not want to “disappoint” his grandson and thus gritted his teeth and continued fishing. Invariably, he ended the day in agony, while he knew that he had to drive his grandson home and unpack the car. His wife tended to be part of the planning in that she always ran his bath as soon as he had finished clearing up and gave him a warm rub. It was clear that James had worked out the most optimal way for carrying on with his hobby, which simultaneously represented his self-defined obligation as a good grandfather. He needed to plan the day with military precision including being prepared for increasing pain. His cost-benefit analysis was clear: he was prepared to suffer physically and mentally in order to have the pleasure of his grandson's company and happiness.
The third extract highlights how normal events such as visiting family and friends, again, requires forethought and preparation:
[W]e are going away on Sunday for a few days. We are only going to see my brother who lives about 60 miles away […] After lunch I took the car to be cleaned inside and out […].After the clean and fill up with petrol we did a bit of packing, not my favourite job as I always get bad pains in my back. […] After that we relaxed for the rest of the evening. I was trying to build up my strength for the drive on Sunday. Driving always knocks me about, and 50 or 60 miles are about all I can manage in one go. I went to bed at about 9 pm as usual to watch a film, but not before I had had my back and wherever I needed rubbed. (11 April 2009)
James had given up cleaning the car himself, something that he felt he could relinquish without diminishing his independence. In contrast, driving the car remained important as part of his role and allowed him to maintain social relationships. However, fulfilment could only be achieved through equilibrium between rest and the activities of packing up and driving, complemented by preventative massage.
James's account strongly evoked his core and moral narratives as “a fighter” and his primary role as a caring family man. It also demonstrates his particular “style” (Bury, 1991) focussing on being able to carry out his social role and associated practice of looking after and sharing activities with his grand children. What emerges from this examination is the depth and scope of reflexivity employed, and the sheer amount of mental and physical work necessary to accomplish the maintenance of daily living that James considers essential and valuable.
Our study supports other studies (Kralik, Koch, Price, & Howard, 2004; Rogers et al., 2007) that found that people clearly learned through experimentation of how to optimise their pain management on a daily basis. Moreover, there is lack of recognition that self-management demands conscious effort and embodied and emotional work on the part of the person who suffers from a long-term condition (or conditions). Several authors have drawn attention to the hard work of being a patient (May et al., 2009) and this study argues that self-management needs to be included in the concept of hard work. Pain colours people's everyday existence and they are constantly reminded that this has to be managed if they are to “carry on with life as best as I can” (James).
People implicitly or explicitly evaluate their state of health within context and this constitutes the basis on which strategies are developed or readjusted. Often, a repertoire of strategies is developed, so that self-perceptions of competence, control, and normality are able to persist (Nimrod & Hutchinson, 2010). The impact of pain and the effectiveness of self-management also require deliberate reflection and action and need to be responsive to changing environments or circumstances. Assessing adverse consequences of certain choices plays a central part, and maintenance of social identity and valued activities appear to outweigh exacerbations of pain and discomfort (Reeve et al., 2010). Altogether, the combination of physical and mental work involved add up to a considerable task that has to be accomplished on a daily basis, hence, our assertion that self-management is hard work.
Leder (1990) draws attention to the embodied reality of pain: rather than focusing on its sensory qualities it is important to recognise that chronic pain shapes the way people are “in the world” (Leder, 1990). The study participants talked from this vantage point in that their sense of self and well-being was encountered and mediated through the gamut of emotions in a lived body (Bendelow, 2009). Thus, to conceptualise self-management as the provision of information that enhances people's daily lives and empowers them oversimplifies what it is important to individuals. Kennedy, Rogers, and Bower (2007), in their assessment of the Expert Patient Programme, argue that people manage their conditions in a variety of ways, influenced by their own background, socio-economic circumstances, personal experience of living with ill-health, family circumstances, and so on. Our study indicates that empowerment may mean the ability to get on with daily life, and in particular, to continue valued activities rather than “managing illness” (Grime et al., 2010). This shift of emphasis is important because it allows re-focussing on maintaining self and identity (core narrative) and on well-being.
This paper has surfaced self-management as encompassing hard work on a daily basis. It may be argued that this has already been shown with regard to other conditions. Yet, the case of knee pain presents a specific conceptual issue: by it being understood as associated with ageing, the condition itself disappears from view as a medical complaint, and self-management is not considered a separate entity that falls within the purview of clinicians as supporters and advisors to the patient. This “double invisibility” appears to be accepted by patients and clinicians alike (Jinks, Ong, & Richardson, 2007), thus the everyday work that people do to remain well and maintain valued activities goes unrecognised.
In conditions that are seen as discrete clinical entities self-management can be defined as patient-led activities. By subsuming knee pain within normal ageing conceptualising self-management becomes more complex because the distinction between “getting on with life” and dealing with pain cannot be made. The condition is normalised, but ageing is not accepted by participants and their activities are framed by their rejection of ageing. The condition becomes embedded and naturalised, and through experience and learning everyday life is facilitated. This process of hard work is almost “second nature” and thus not explicitly acknowledged as such. Consequently, people with knee pain do not tend to ask for help from clinicians, and clinicians do not identify patients who are self-managing. The dilemma is conceptualising knee pain as normal ageing may assist people to carry on with life, while redefining it as a clinical syndrome may medicalise the problem and inhibit people's coping mechanism. However, recognition of the work that people expend in staying well is needed so that professional support and advice can be properly contextualised.
The study on which this paper is based is funded by the National Institute for Health Research, Research for Patient Benefit programme, grant number PB-PG-0107-11221. The views expressed in this paper are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. We thank Janet Grime for many insightful discussions, and all the participants for their willingness to take part in the study.
The authors have not received any funding or benefits from industry or elsewhere to conduct this study