Temporally divergent significant meanings,biographical disruption and self-management for chronic joint pain

Abstract

Self-management is recommended by policy and clinical guidelines as a way to contend with the growing incidence of osteoarthritis-related joint pain in an ageing population. Sociologists assert that self-management is as much about lay strategies for dealing with the biographically disruptive qualities of chronic illness as opposed to solely complying with medical regimens. The original concept of biographical disruption coined by Bury is not uncontested. Chronic joint pain has been characterised as featuring ‘co-existing meanings’ of significance and consequence. The former conferring no biographical disruption due to osteoarthritis being associated with ‘normal ageing’ and the latter causing biographical disruption due to the corporeal limitations joint pain imparts, which, in turn, can influence whether, why and how self-management is undertaken. This article reports findings from repeat interviews and a diary study completed by 22 participants with chronic knee pain. We explore the co-existing but temporally divergent ‘meanings as significance’ associated with knee pain. Participants describe the onset and current experience of the pain in terms of biographical normality (retrospective or contemporaneous meanings). Future meanings as significance are mediated by cultural beliefs about ageing and current physical consequences of the condition, and also have a distinct character of their own. Knee pain is associated with the possibility of disability and harbours a distinct risk; potential disruption to everyday social relationships, notably relating to care and dependency. In turn, future meanings of significance influence the preventative self-management strategies that people utilise. We argue for a more cogent theoretical understanding of temporal dimensions of biographical disruption, biographical work and subsequent self-management by utilising and extending the thought of Bury, and Corbin and Strauss. Doing so helps to understand patient self-management strategies and facilitates self-management support in clinical settings for osteoarthritis and potentially other chronic conditions.

Keywords

chronic illness and disability experiencing illness and narratives illness behaviour lifestyle

Self-management is recommended by academics and policy makers as a way to combat the consequences (in terms of personal impact and costs to healthcare, state and society) of ever-increasing chronic conditions in Western populations (Ong et al., 2014). One common chronic condition is chronic joint pain attributable to osteoarthritis (OA), with estimates suggesting that it affects 8.5 million people in the United Kingdom alone (Arthritis Care, 2012). It has been described as a serious and life-altering joint disease which causes pain and disability, reduces quality of life and generates inordinate healthcare and socioeconomic costs worldwide (Lubar et al., 2010). Accordingly, policy makers, clinical guidelines and researchers recommend that patient-centred and responsive self-management interventions delivered through primary care are the best way to deal with the deleterious consequences of chronic joint pain (Department of Health, 2006; Dziedzic et al., 2013; National Institute for Health and Care Excellence (NICE), 2014).

Sociologists argue that self-management transcends perspectives frequently adopted by policy makers, clinicians and researchers, namely, building individual attitudes and aptitudes to deal with illness and manage treatments (Kendall et al., 2011; Rogers, 2009; Ong et al., 2014). Accordingly, healthcare interventions and support programmes should be receptive to the complex and context-specific meanings, needs and existing management strategies of chronically ill individuals (Bury et al., 2005; Ong et al., 2014; Kennedy et al., 2007).

Underpinning the sociological conception of self-management is the influential work of Bury (1982, 1991) and Corbin and Strauss (1988). Bury defined the concept of ‘biographical disruption’, or the way that illness can challenge or redefine an individual’s sense of identity and social relationships. In other words, chronic illness can hold a number of ‘risks’ to the self and sociality (Bury, 1982, 1988). In a similar vein, Corbin and Strauss (1988) outlined ongoing and inter-related processes (or ‘work’) inherent to life with chronic illness. This included the symptom management of chronic conditions, actively maintaining everyday roles and relationships, and situating illness biographically to create feelings of certainty contemporaneously and in the future.

Bury (1991) distinguished two disruptive components of illness. He identified the sense-making involved in living with chronic illness (meaning as significance) and the corporeal elements of illness (meaning as consequence). The former is the process of defining what illness signifies socially and the impact on sense of self and immediate relationships. The latter concerns how altered physical capabilities disrupt people’s lives and social relations (Bury, 1991). The term self-management was not explicitly allied to the above work, but more recent writing has directly connected biographical work, everyday strategies and lay symptom management as fundamental to the process of self-management (Bury et al., 2005; Kennedy et al., 2007; Lorig et al., 2003; Townsend et al., 2006; Ong et al., 2011). Bury’s theorising has been central to long-standing debates in the literature and has received criticism and challenge, leading to revisions of the main argument. In contrast, while Corbin and Strauss have been widely drawn upon, less conceptual development has occurred (apart from Richardson et al., 2006b; Townsend et al., 2006). We will build on these theoretical debates below.

Bury’s work has been challenged on the grounds that the context and life experiences of individuals shape how they respond to chronic illness. Theorists have suggested that living lives featuring struggle, poverty, illness and misfortune may mean experiencing a chronic illness is not unexpected or a source of biographical disruption (Lawton, 2003; Pound et al., 1998; Williams, 2000). This has been named ‘biographical flow’, or a process of a chronic condition being normalised within the life course ‘dependent upon specific biographical contingencies of the given participant’ (p. 244) (Faircloth et al., 2004). Particular to the focus of this article, Sanders et al. (2002) argue that joint pain has ‘co-existing meanings’. On one hand, experiencing painful joints is ascribed to being a part of ageing or due to the working life of an individual. However, the consequences of the disease can cause disruption when it causes discomfort, restricts activities and social roles and imparts fear of impairment and loss of autonomy. Thus, joint pain is normal in terms of ageing, but abnormal in terms of consequence (Sanders et al., 2002).

More recent contributions to the biographical disruption literature indicate that there may be fluctuating temporal aspects (both in terms of the course of an illness and anticipated lifespan) to the disruptive nature of illness, marking a more explicit consideration of the temporally contingent nature of biographic work initially highlighted by Corbin and Strauss (1988), albeit without necessarily basing analysis around it. Richardson et al. observe that interpretations of illness cause, the point in biography (age) and the ability to stay in a particular role (such as work) influence how disruption is experienced. Furthermore, the person’s perception of longevity (how long they will live) influences how much disruption illness is perceived to confer (Richardson et al., 2006a). Locock et al. investigated the experience of living with motor neurone disease, a terminal condition. Notably, accounts featured fluctuating episodes of biographical disruption, ‘repair’ (attempts to re-prioritise what is important in life with limited time), ‘flow’ (as typified by Faircloth et al., 2004) and ‘abruption’ (meaning that ‘life is over’ with little remaining sense of purpose upon diagnosis) (Locock et al., 2009). Sanderson et al. revisited the issue of ‘normality’ and biographical disruption in relation to rheumatoid arthritis. They found that illness may entail disruption, may feature ‘biographical abruption’, may not always be seen as biographically disruptive and/or may be subject to biographical repair. ‘Normality’ during illness is argued to be prone to shifts relating to symptoms and changing perceptions of what a condition entails which, in turn, means experiences of disruption fluctuate (Sanderson et al., 2011).

Offering a slightly different focus, but once again noting shifts and temporality (and congruent with the territory explored by Corbin and Strauss (1988), Zinn contends that living with illness-related ‘risk’ involves constructing a sense of certainty within the life course. This depends on how illness is perceived as a source of disruption in the context of the person’s biography currently or in the future (Zinn, 2004, 2005). In other words, understanding how disruption, or the perception of disruption, is temporally mediated is necessary to adequately understand the actions that people take (Zinn, 2004). Similarly, Brooks et al. pinpoint the importance of ‘imagined futures’ for people living with chronic conditions, or the process in which people define a prognosis in terms of the life they will lead and the course of their illness. In turn, the future, or the perception of it, is argued to be intimately tied the strategies that people adopt in the form of goals or milestones to aim for, often relating to the ability to continue in social activities and retaining or regaining a sense of self (Brooks et al., 2014; Zinn, 2004).

The temporal component of illness management highlighted by Corbin and Strauss (1988) and considered in later literature (Brooks et al., 2014; Zinn, 2004, 2005) has not been investigated explicitly in relation to OA. While Sanders et al. (2002) suggest that some participants worried that current symptoms (the consequence of joint pain) may change their existing social relations with friends and relatives in the future and lead to dependency (Sanders et al., 2002), there is no explicit and thoroughgoing exploration of ongoing biographical certainty, how people envisage the future with joint pain, the disruptive nature of joint pain symptoms and self-management. The recent theoretical developments since Sanders et al. (2002) published their findings, notably the contested utility of static concepts of biographical disruption (noted above), and the call for ‘theoretical reflexivity’ (Faircloth et al., 2004; Williams, 2000) also justify critically revisiting the case of OA-related joint pain. This article reports emergent findings from a study which asked the following questions: how is OA-related joint pain understood and how does it affect people’s lives? Do people self-manage chronic joint pain and if so, how? What factors influence self-management? In this article, we explore in detail how temporally divergent disruption and future ‘risks’ need and why they need to be accounted for to understand how and why people self-manage.

Methods

We did not adopt a ‘full’ Grounded Theory (GT) (Charmaz, 2006; Glaser and Strauss, 1967) approach for this study, but we followed Charmaz (2006) who emphasised the value of work that only uses ‘specific aspects of the approach’ (p. 9) and contended that the procedural steps of GT are a set of ‘principles and practices’ (p. 9) that should be used flexibly to suit the circumstances and needs of individual research projects. Thus, we used elements of GT methodology in our study (in particular, analysis and facets of sampling, discussed below).

We focused our sample on individuals with knee pain because the knee is the most commonly affected joint site (Jinks et al., 2011). Potential recruits were purposively identified from respondents (N = 567) to a preexisting, separately funded, longitudinal survey of joint pain sufferers aged 50+ years in the West Midlands region of the United Kingdom (Thomas et al., 2004). Sampling was based on self-completion of the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC). This is a validated outcome measure for use in people with knee OA and was included in the questionnaire. We sampled for those who indicated they experienced moderate-to-severe pain.

The questionnaire also included a tick box to indicate whether individuals had consulted for knee pain. The intention was to select participants with symptomatic joint pain who had not been in contact with a health care professional – arguably they would not have discussed self-management (from a medicalised perspective) with them. The aim was to facilitate discussion about self-management from a ‘lay’ perspective. Only those who had ticked a box on the questionnaire giving consent to be contacted about future studies were included in our sample frame. We sent 112 (out of the original 567) people who met our sampling criteria an invitation letter and information sheet about this study. Our final sample featured 22 participants who took part in the study (13 women and 9 men). The youngest participant was 56 years old and the oldest was 90 years old. The mean age of participants was 66 years of age.

Sampling and data collection in a ‘true’ GT study are cyclical and intertwined. Once initial batches of data have been collected and analysed, researchers will sample for participants to explore what might not be answered in earlier rounds of data collection (theoretical sampling). The goal of theoretical sampling is to ensure that emergent categories or themes are saturated and analytically robust (Charmaz, 2006; Glaser and Strauss, 1967). Thus, we recognise that our sample was not a ‘true’ GT theoretical sample and is a limitation of the study in this respect.

We collected our data in three stages. First, participants were interviewed using a semi-structured approach. A topic guide was used during baseline interviews (all interviews were conducted by the lead author) to prompt discussion about the participants’ history and understandings of knee pain and its onset, their experience of pain, how it influenced their life (if at all), how they responded to the effects of the condition (embodied and social) and views of possible outcomes of knee pain.

Second, we offered participants the opportunity to take part in a diary study for the 6 months following the baseline interview. Using diary methods allowed access to real-time accounts of daily life and managing illness rather than retrospective accounts provided by interviews (Milligan et al., 2005). Diaries also elicited everyday activities, routines and relationships that were not obtained from an in-depth interview. Participants were asked to complete diaries for 1 week of their choosing, each month, for 6 months. Prompts were included with the diary which offered suggestions and direction to participants. These included ‘Think about daily life with knee pain’; ‘Consider any thoughts or feelings that you may have about your knee pain’ and ‘Think about the things that you do and why you have done them for your knee pain’. Diaries were posted back to the researchers each month. Finally, a follow-up interview at 6 months was conducted. Undertaking a follow-up interview offered the opportunity to gain greater depth of understanding and insights into the circumstances of participants (Murray et al., 2009) and complemented the use of a diary study (Milligan et al., 2005).

As noted above, we utilised a purposive sample rather than a theoretical one. However, data collection was conducted in batches and facilitated iterative analysis and data collection as per the GT approach. We designed follow-up interviews following analysis (discussed below) of the baseline interviews (Murray et al., 2009) and diaries (Milligan et al., 2005) to explore emerging themes and topics that needed additional explanation.

Prior to interviews taking place, written informed consent to participate and be audio recorded was obtained from participants. We obtained ethical approval from the local branch of a UK National Health Service (NHS) research ethics committee. Data were collected between December 2008 and August 2009. Baseline and follow-up interviews were conducted in participants’ homes and lasted between 30 minutes and 1 hour 30 minutes. Not all the participants took part in all stages of our fieldwork. Six participants (four men and two women) participated in baseline interviews only; one woman completed a baseline interview and the diary study; six participants took part in baseline and follow-up interviews (three men and three women) and nine participants (two men and seven women) participated in baseline interviews, the diary study and follow-up interviews. Two reasons underpinned the limited response to diaries. First, participants did not see the necessity of choosing a specific week each month to complete a diary. Instead, they suggested writing diaries as and when they felt appropriate. We agreed because maintaining a participant-led focus was apposite. Second, participants declined due to time constraints or felt unable to participate (literacy). Finally, those who did not want to take part in follow-up interviews cited reasons of limited time or ill health.

Following GT (Charmaz, 2006), initial close coding of interviews was undertaken. Comparisons were made between the interviews to identify similarities and account for them. Initial codes were consolidated and developed into broader unifying themes. Initial codes and themes were applied to diaries and follow-up interviews and corroborated or altered accordingly via the process of constant comparison. We also compared for changes in participants’ experiences or views on topics at different time points. This process was strengthened because all team members undertook regular separate coding at all stages of analysis, followed by team discussions to arrive at agreement regarding coding and interpretation (Green and Thorogood, 2004). To provide an example, we identified the initial codes ‘pain is hereditary’, ‘working life and wear and tear’, ‘physical occupations and pain’, ‘pain and natural ageing’ and ‘accidents, injuries and onset’. As analysis progressed, we clustered these codes under the theme of ‘onset and retrospective meanings’ (see ‘Results’ section). An audit trail of coding and recoding decisions was maintained. Memo writing helped to link conceptual thinking, coding and recoding to the audit trail.

Findings

We now present the three main themes that we identified during analysis which relate to participants understanding of OA onset, its future implications and the relationship with self-management practices. These are as follows: onset and retrospective meanings, the future meaning of joint pain and (self) managing future uncertainty.

Normal and expected pain: retrospectively contextualising the onset of OA

Often the meaning given to a condition is part of seeking answers to the questions ‘why me and why now?’ regarding illness onset (Bury, 1991) and relates to biographical work (or management) as identified by Corbin and Strauss (1988). Participants did not look for answers to why ‘joint pain’ struck them down with an immediate set of problems. Rather, they offered retrospective explanations for the onset of knee pain. One way in which this was achieved was by situating joint pain as a hereditary condition (Turner et al., 2007), but overall inherited illness was not strongly emphasised as a primary explanation, rather hereditary accounts co-existed alongside other antecedents.

More commonly, retrospective accounts of incidents that may have started ‘wear and tear’ of the knee joint were proffered. For example, Joshua attributed his knee pain to a motorcycle accident in his youth where the brunt of the impact was on his knee and hip:

As well as being sore with gravel rash, my knee hurt because I’d banged it. And my hip. And all of a sudden it gets niggly, and that gets niggly, and oh good god, you know, yes, I just banged myself on me motorbike, you know, 60 years later!

Joshua, 1st interview

For Joshua, this is a significant and dramatic incident and he reasons that his injuries correlate to the joints which now confer pain. Thus, he employs a post hoc rationalisation strategy using biographical knowledge. In tandem to the events depicted, joint pain was interpreted as something that is progressive and likely to worsen. This was linked to the notion that the pain is related to ‘old age’ (discussed further below).

General wear and tear explanations are common among older people with joint pain (Turner et al., 2007) and participants in this study discussed particular working contexts that they associated with wear and tear. Gloria, a retired teacher, rationalises her knee pain as potentially influenced by interactions with her pupils throughout her working life:

I was a teacher. I was a Reception Class Teacher; had very young children and spent the whole of my day crouching on my knees, because of low desks and low chairs. I either had to sit on a low stool or I was crouching down, to get to their level, which, while I was doing. never thought about it; it never bothered me, but I used to crouch down rather than bend-over because I felt, you know, it was a strain on your back to keep permanently bent so I crouched down and I’ve heard of one or two infant teachers, since, who’ve had the same problem.

Gloria, 1st interview

Here, the individualised account is placed against a reflection on the experience of the same problem in colleagues. Gloria also offers an explanation for other people’s joint pain and at the same time raises knee pain as an occupational issue. This chimes with previous research noting the salience of the wear and tear phenomena in people’s accounts with joint pain in relation to occupation (Busby et al., 1997; Gignac et al., 2006; Grime et al., 2010; Sanders et al., 2002) but is related to and rationalised within the context of the person’s life course and social-structural location (Busby et al., 1997). Grime et al. (2010) argue that the concept of wear and tear is often used to signify ‘virtuous use’ such as hard work as a means to explain the reason for having joint pain. Contextualisation of joint pain within the life course is well chronicled and, in turn, this is equated to OA being interpreted as a natural part of ageing (Gignac et al., 2006; Sanders et al., 2002). A similar pattern emerged among participants in this study:

Catherine:

But … it’s old bones no doubt.

Interviewer:

Can you tell me about that? What do you mean by old bones?

Catherine:

Well, I’m getting old so obviously they become weaker don’t they? They become worn out. The numbers of people I’ve heard about recently who’ve had new knees is unbelievable and I’m thinking oh will it come to that? I don’t know.

Catherine, 2nd interview

Catherine defines her knee pain as part of a naturally occurring degeneration process relating to growing older. She contextualises her assertion by noting similarities within her peer group, indicating that from this she determines that pain is normal for her age. The final element of the extract indicates that she perceives a possible future need for a knee replacement, but this future may or may not happen (future possibilities are discussed in more detail later). As Radley and Billig (1996) note, people ‘construct their state of health as part of their ongoing identity relations with others’ (p. 221) and a form of community knowledge, or belonging to a group or similar demographic, may be employed when accounting for the onset of a condition (Salant and Gehlert, 2008). In this case, participants consider themselves part of a group sharing a common feature (age) with a similar set of concerns, namely, painful joints.

While these renditions of OA onset have been presented in isolation, participants frequently directly or indirectly combined explanations for the onset of their pain (MacKichan et al., 2010). Depictions of joint pain onset featured complex retrospective parallel explanations which carried a consistent logic and complemented rather than usurped each other. Participants position joint pain as ‘natural and normal’ within the life course, which can be interpreted as an observational statement of events that helps to orient self and biography (Corbin and Strauss, 1988). Thus, as Sanders et al. (2002) argue, people give OA a particular meaning which does not confer biographical disruption. Noticeably, this meaning making is temporally retrospective, which is only part of the story about meaning as significance that participants gave to OA. We now turn to presenting data that highlight illness management work is, in part, biographical sense-making which includes anticipating the future (Corbin and Strauss, 1988).

Anticipated disability and dependency: the future meaning of joint pain

Participants did not assign themselves the identity of a disabled or ‘ill’ person (Thomas, 2007) nor did they suggest that they were currently unable to do things as a result of joint pain, arguably because of the ‘everyday’ management work they undertook. Participants discussed how they currently maintained normal life (Townsend et al., 2006) and also detailed the potential for future need to manage disruption from illness. In other words, they discussed the ‘maybe’ of what problems illness (in this case knee pain) could present (Corbin and Strauss, 1988) which was bound but not inseparable from their view of ageing. One account (provided by ‘Jessica’) offered an exemplar of how meanings relating to joint pain and ageing were entangled:

Interviewer:

So what do you think might change in the future if anything at all?

Jessica:

As I get older and if it gets worse

Jessica, 2nd interview

Jessica’s response to a question about the future illustrates the perceived element of living with joint pain that is tied to the ageing process. However, it also suggests that the condition itself is synonymously with something that can cause future problems. The following extract demonstrates that losing the ability to walk as a result of knee pain was at the forefront of her consciousness, while simultaneously highlighting contemporaneous strategies to retain ‘normal’ capacities and relationships (Townsend et al., 2006). She held concerns that she may become incapacitated and that it could affect her ability to act as a carer for her husband (who had dementia and was confined to a wheelchair):

Jessica:

If I go down, Jason (husband) goes down. I’ve got a Daughter; I’ve got Grandchildren, you know. I’ve got a lot of living to do. I don’t believe in giving up. Yes, I’m 61, but 61 today is how you were in the 40s, you know, a few years ago. It’s the new 40, isn’t it. My life’s got a lot of living to do. I still go out; I pick myself up. I like Museums; I like Egyptology and I go and I’m off. Yeah? I go out for walks; go out for lunch, anything. Yeah. We still go on holiday; we struggle but we manage, don’t we?

Jason:

Ooh, yeah.

Jessica:

Aye, you want to see us on a train. It’s hard work when you haven’t got a seat on the train and you’ve got to hold that wheel-chair with your knees. Yeah, all the way from (names midlands town) to Llandudno. And all changing at Crewe as well. Sometimes it works perfectly; sometimes it doesn’t and the last time we went, it didn’t and I’m holding the chair. I couldn’t put the brakes on because of people trying to get past me who have to keep moving, to get to the toilet and I had to support him with my knees, all the way. If I don’t look after my knees, I couldn’t do that, could I?

Jessica, 2nd interview

Jessica resisted the normative ideas of ageing being a time of decline by outlining how her husband relied on her and she is unwilling to stop doing things just because she was getting older. Joint pain was separated out from ageing in this extract. Jessica focused on the current normalising activities (Townsend et al., 2006) she engages in and the potential for impairment, which is related to a possible future restriction in caring and pleasurable activities if she did not take care of her knees. Thus, Jessica revealed that age may be a time of decline, but that there is something potentially disabling about knee pain in and of itself.

Another example is that provided by Lydia. She had experienced disruptive consequences from her knee pain for some time and was fearful of the future, stating that she worried constantly about what might happen:

The knee, as I say the knee is a constant fear for me. That is on my mind all the time. That knee is on my mind all the time. This knee, yeah this one, this one’s much more swollen than that one, but that, you know, that one, yes, that, that terrifies me what might happen with that knee.

Lydia, 1st interview

Lydia conveyed her fears by stating how ‘terrified’ she was about what may happen due to her knee pain. In the course of the interview, she discussed her worries over her knee locking, leaving her prone and isolated. In the follow-up interview, she argued that her knee pain is getting worse and relates it to getting older, with the anticipation that she will incur more problems:

Yes, it’s – I feel quite honestly, I feel it’s getting worse. I’ve got friends that are a lot older than me and they keep saying to me, you’re so, you’re so fast, you’re so active. I say yes but you’re five years older than me. In five years time, I’ll be just like you, you know. And I think, yes it’s true I think I will in five years time. I can’t possibly go on being as lucky health wise as I am even though I’ve got knee pain and back pain.

Lydia, 2nd interview

Lydia explained how she expects to have worse health as she ages, drawing comparisons to her peer group. She argues that they are older and this is the reason that they have various health ailments and that she will similarly experience worse pain and impairment as she ages. Thus, Lydia associated an increased likelihood of dependency, pain and impairment with getting older. Her knee problems were expected to get worse as she ages because her general health will decline. The embodied consequences of her condition mediate the meaning as significance she gives to her condition (i.e. the future consequences) because they resonate with beliefs about ageing generally.

This differs from Sanders et al. (2002) as they argue that significance and consequence co-exist rather than distinguishing the temporal nature of how consequence can shape the significance given to the future with joint pain. This reflects the view that symptoms, normalisation and biography (Corbin and Strauss, 1988) and the embodied experience of ill health can influence the way that the future is perceived and shape subsequent actions as opposed to age alone (Lawton, 2002). Closely related to individuals’ concerns were the potential negative consequences of life with knee pain which revolved around losing independence. Esther had a number of chronic conditions that consumed a lot of time in terms of managing their impact. She was asked whether she prioritised any particular condition. Her answer provided an insight into how she felt about the possibility of becoming ‘disabled’ and losing her independence:

Interviewer:

is there any condition that perhaps you think is more important to try and do things for?

Esther:

I think it’s me arthritis.

Interviewer:

Yeah? Would you mind telling me why that is?

Esther:

I don’t want to be immobile. Things I told you, I don’t want to rely on people. I don’t want to do that. I don’t want to burden anybody with anything. You know, but that’s my way, so.

At the time of the interview, Esther considered managing ‘arthritis’ her priority. The backdrop to prioritising her painful symptoms was her concern about what could be the eventual outcome of her ‘arthritis’, namely, ending up immobile and a ‘burden’. The thought of becoming a ‘burden’ compromised her sense of self and represented a morally untenable position, thus reflecting previous literature emphasising the complex relationship between retaining normality, self-presentation and morality (Townsend et al., 2006), albeit with a future-oriented focus. Celia provides another clear example of this:

I wouldn’t like to dependent on anybody, you know for a meal or anything like that. I wouldn’t like to sit here and wait for somebody to come in and feed me. That must be awful. Perhaps, it’s because I’m a carer that I feel like that.

Celia, 2nd interview

Celia positioned being cared for as an unpleasant experience, especially with regard to not being able to meet her own basic needs. By stating ‘it’s important to anybody’, she defined independence as fundamental to being human. During the dialogue, Celia conveyed a clear sense that being depended on and offering help was a positive and virtuous social position, in contrast to the negative social position occupied when being cared for (in part, stemming from her occupation in a care home).

Loss of mobility was seen as a potential part of knee pain and also of growing older. Negative cultural stereotypes (often perpetuated socially, in policy and by biomedicine) were drawn upon to assert that ageing is a time of inevitable ill health and disability (Higgs et al., 2009). Furthermore, embedded within people’s accounts were prevalent negative attitudes and values surrounding ‘disability’ and dependency (Thomas, 2007).

Participants positioned older age as a time when becoming ‘disabled’ and losing independence can be expected. Simultaneously, joint pain was given a future meaning as significance because it was considered to cause disability eventually. Both ageing and the current consequences of joint pain influenced how participants anticipated the future, namely, joint pain had the potential to cause future impairment and loss of independence, but so did getting older. In other words, beliefs about decline in age compliment participants’ feeling that joint pain can be disabling. However, the future significant meanings of the condition and beliefs about ageing were not necessarily symbiotic or positioned as inevitable. Thus, joint pain holds a negative future significant meaning as something that could cause future biographical disruption and with it a series of negative moral connotations to be self-managed (Townsend et al., 2006).

Deliberative strategies to manage future uncertainty

Previous research has reported that people with joint pain seek to maintain independence, maintain normality and stay physically and psychologically ‘well’ (or self-manage) by going about their usual daily activities (Grime et al., 2010; Ong et al., 2011) and often note the benefits for their pain from doing this (Morden et al., 2011). An important way that participants attempted to prevent their knee pain which would result in potential disability and loss of independence was by undertaking activities purposively, thus managing biography, symptoms and everyday roles (Corbin and Strauss, 1988). These were either totally or partially focused on preventing deterioration of their knees and/or maintaining mobility. For example,

Interviewer:

Why was exercising important to you at that particular time? Why did you feel it was necessary?

Gloria:

Well, I’ve always you know felt exercise necessary because I think you do cease up particularly as you’re getting older, you know

Gloria, 2nd interview

Gloria indicates that she feels that ‘ceasing up’ is something related to knee pain and to getting older (as discussed, above age and joint pain are associated, but the future consequences are not necessarily symbiotic). She exercises to try to prevent the effects of age and her knee pain. Her comment about exercise always being ‘necessary’ is important. During the interview, she justifies her choice because she is no longer undertaking as much everyday activity since retirement from her job.

Jessica also describes why she chooses to go to the gym and do strengthening exercises for her knees:

There’s nothing you can’t do without your legs – your walking; your shopping; your cleaning your house; your looking after your Family. You’ve got to look after them. So if you’re running … an athlete will strengthen his legs won’t he? So its just – to me – it was just common-sense.

Jessica, 1st interview

She defines ‘healthy’ legs as pivotal to her responsibilities and argues that ‘common sense’ knowledge of biomechanics and load bearing underpins her actions, which serve to continue in her role of ‘looking after your family’, something that implicitly would not be possible with ‘weak’ knees. This reasoning again reflects the complex nature of self-management work bound up in symptom management, everyday work and morality work (Townsend et al., 2006) but with a future orientation.

These extracts highlight that participants deliberately participate in exercise in an attempt to prevent future disability due to knee pain (Hendry et al., 2006). Not all participants engage in exercise like going to the gym. Some, like Esther for example, argue that walking a distance every day to the local town is important to maintain mobility. In some instances, these are deliberative and calculated actions focused on joint pain. But equally often the activities that people undertake are bound up in and embedded within everyday contexts and activities (Corbin and Strauss, 1988; Townsend et al., 2006), or these activities act as a platform for people to take up more deliberative actions. Thus, these more deliberative strategies are part of the preventative measures that participants employ to be able to maintain biographical certainty, not only for themselves but also to maintain status quo for other family members (Jessica’s example) and not place ‘meanings at risk’ (Bury, 1988; Corbin and Strauss, 1988).

Discussion

Participants detailed their multiple and overlapping explanations for the onset of joint pain (MacKichan et al., 2010), often arrived at by ‘a more or less systematic process whereby experience is checked against life events, circumstances and history’ (p. 760) (Popay and Williams, 1996). To this end, participants utilised a form of ‘lay epidemiology’ and cross-checked different factors to provide a retrospective ‘candidacy’ (Davison et al., 1991) for their joint pain onset. Candidacy in this sense offered an explanation for why someone was experiencing illness (Hunt and Emslie, 2001). By retrospectively normalising joint pain people achieved a sense of biographical continuity (Corbin and Strauss, 1988) and was part of a process of staying ‘well’ and maintaining identity (Grime et al., 2010). From this perspective, joint pain did not necessarily confer biographical disruption (Sanders et al., 2002). But temporally retrospective sense-making was only one part of the story about the meaning of significance that participants gave to OA.

Chronic widespread pain has been found to hold multiple meanings which influence the way that it is positioned as biographically disruptive (Richardson et al., 2006a). Other reflections on the concept of biographical disruption suggest that illness can bring about ‘biographical abruption’, or sense that normal life has come to an end (Locock et al., 2009), or can feature facets of all the above in a shifting, dynamic process (Sanderson et al., 2011). Our findings differ from these studies because participants did not always experience immediate biographical disruption due to the significance or consequence of joint pain. However, they exhibited a concern about the future significance (i.e. imagined consequences) of joint pain which could lead to a future disrupted biography (Corbin and Strauss, 1988). Participants’ accounts revealed that there were some parallels between the potential consequences of getting older and the potential consequences that OA could cause (particularly, the anticipated negative impact on self, social relationships and moral presentation (Townsend et al., 2006)), but the two were not necessarily symbiotic. To this end, joint pain held its own distinct future meaning as potentially disabling and ‘independence’ removing. In other words, similar to Sanders et al. (2002), our findings suggest that joint pain holds co-existing meanings, but rather than representing differences between significance and consequence, these are co-existing meanings as significance which are temporally divergent.

Traditionally, much sociological theory has concerned itself with realigning life in the immediate aftermath of chronic illness onset (Bury, 1982) or retrospectively looking back across the life course and attempting to understand whether and how people may interpret illness as something that was likely to happen (Faircloth et al., 2004; Williams, 2000). Surprisingly, given the seminal contribution of Corbin and Strauss (1988), less attention is paid to how people depict the future with a condition and the narrative or biographical work undertaken in this light. One exception is Alaszewski et al.’s (2006) work with stroke survivors. Three ways of viewing the future and (possible) ‘risks’ were reported: as not being considered, as being considered but accepted as inevitable or as accepted and strategies taken to manage the future and future risks (of physical harm and to identity) (Alaszewski et al., 2006). The data presented suggest that the third of Alaszewski’s typologies is relevant to the lives of the people who feature in our study. Similarly, Brooks et al. (2014) highlight the importance of account for an individual’s prognostic sense-making and how this influences self-management and other actions.

As discussed in the introduction, self-management is best defined as the work that individuals do to provide meaning to illness, manage self, social relations (including morality) and follow treatment regimens (if applicable) (Bury et al., 2005; Corbin and Strauss, 1988; Townsend et al., 2006). The self-management strategies used by our study participants included providing meaning retrospectively, continuing with everyday work to instil ‘normality’ and deliberative attempts to stave off perceived future consequences of joint pain (‘disability’ and negative moral connotations) by trying to remain active or doing exercises.

Jens Zinn’s (2004) theorising about ‘risk’ and illness can be usefully applied to help extend Corbin and Strauss’ thoughts about future-orientated biographical work and further illuminate the process that people go through when dealing with the significant future consequences of chronic illness. For Zinn, ‘risks’ emerge from uncertainties (often generated by our social epoch). Conversely, living life in a ‘normal’ way and maintaining certainty is valued. Part of managing uncertainty is the process of creating ‘certainty constructions’, or the preferred biography, lifestyle and identity that a person wishes to maintain. An event or action (by others) may cause uncertainty, but as long as there is a way for such events or actions to be controlled or mediated, it becomes a risk with different possible outcomes (Zinn, 2004). Zinn maintains that illness can be a risk. This is because illness can be a harbinger of uncertainty as it can challenge the certainty constructions that people hold. Crucially, living with illness holds the possibility of taking actions to respond and (re)establish a sense of certainty (Zinn, 2004, 2005).

The uncertainty when living with chronic widespread pain has been noted previously (Richardson et al., 2006b) and the future significant meaning given to joint pain, or the possibility of disability, undermined the ‘certainty constructions’ of participants. In other words, it attenuated the sense of self or social role that people inhabited (Townsend et al., 2006) or wished to perform long term. Zinn (2010) argues that people are able to deal with uncertainty by altering their certainty constructions (or ideas and conceptualisations of what life is and how it should be lived) and incorporating possible outcomes, in this case the possibility of becoming disabled from joint pain. Thus, the future meaning as significance that participants gave to knee pain (potential for disablement with the subsequent effect of becoming a burden) was the process of altering a particular certainty construction.

According to Zinn, closely aligned to the certainty constructions that people devise are the ‘protective actions’ (p. 203) they use. These are the actual strategies and activities that people undertake to mobilise or maintain a ‘certainty construction’. In other words, they are actions that are intended to avoid a possible negative future outcome (i.e. something that is incorporated into an existing certainty construction) (Zinn, 2004). The exercises and attempts to use particular activities were protective actions deployed by participants. In short, the self-management strategies used by participants were intimately linked to the future biographical disruption that they perceived OA to entail and their attempts to ensure that a sense of biographical certainty could be maintained.

Conclusion

Adequately understanding the meanings given to OA-related joint pain involves understanding the temporally divergent meanings of significance that individuals hold. Previous research and theorising into OA has predominantly emphasised contemporaneous meaning making (Gignac et al., 2006; Sanders et al., 2002) and (broadly defined) self-management work (Grime et al., 2010; Ong et al., 2011; Morden et al., 2011; Hendry et al., 2006; Mackichan et al., 2013; Moore et al., 2014). This article presents a modified theoretical perspective of how people attribute meaning to OA (building on Sanders et al., 2002) and offers a more nuanced view of the complexities of living with and self-managing OA biographically.

Theoretically, the concepts of (a) temporally divergent meaning of significance and (b) the realignment of certainty constructions to deal with anticipated biographical uncertainties cogently extend theories and research that already (in subtly different ways) focus on biography but have not necessarily lucidly and consistently been applied within the field of chronic illness. These theoretical insights might be usefully extended to other chronic conditions and employed at different stages in an individual’s life course. In doing so, the lay prognoses, or ‘risks’, that conditions entail can be elucidated. This is important because the complexity of temporally mediated meanings given to conditions can influence the actions individuals take to secure current and future integrity of self, morality and physicality (or their self-management). In turn, practitioners and policy makers can be usefully sensitised to patient’s context-bound needs and sense-making which can aid the provision of patient-centred self-management support (Kennedy et al., 2007; Ong et al., 2014).

Footnotes

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 work was supported by the National Institute for Health Research, Research for Patient Benefit programme, grant number PB-PG-0107-11221. This work was also supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care West at University Hospitals Bristol NHS Foundation Trust. Clare Jinks is part-funded by the National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care West Midlands. The views expressed in this article are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

Author biographies

Andrew Morden is a Research Associate at the University of Bristol. He is particularly interested in qualitative methodology, experiences and lay management of chronic illness, lay and professional understandings of ‘risk’, and how new interventions are taken up and sustained within health-care settings.

Clare Jinks is a Senior Lecturer in Health Services Research Keele University. She has carried out population studies on knee pain and disability, but has combined this with embedded qualitative research. She is also interested in public health, disease prevention, and embedding qualitative research within complex interventions.

Bie Nio Ong is a Professor emeritus of Health Services Research at Keele University. Her interests are in patient experiences of pain and disability, user involvement in research, health policy and organisational research and research methodology.

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