‘Living within your limits’: activity restriction in older people experiencing chronic pain

Abstract

Background: although maintaining activity is key to successful pain management, and important to health and wellbeing, it is known that older people in pain frequently alter or reduce activity levels. A ‘fear-avoidance’ model is often used to explain avoidance of activity in the face of pain. However, this model is not intended to take account of the wider context in which activity changes take place, nor older people's own explanations for their behaviour.

Objective: to investigate the reasons why older people in the community adjust their activity levels when living with chronic pain.

Methods: thirty-one people aged between 67 and 92 were purposively sampled from respondents to a community-based cross-sectional survey. All participants had reported long-term pain and were interviewed about this. Data were collected and analysed using a qualitative constructivist grounded theory approach.

Findings: explanations for deliberative reduction or ceasing of activities reflected a desire to prevent pain exacerbation, thereby avoiding medical intervention. It also reflected a desire to safeguard autonomy in the face of pain in older age. Restrictions were often rationalised as normal in older age, although co-existing accounts of perseverance and frustration with limitation were also evident.

Conclusions: a rational desire to avoid pain exacerbation and medical intervention motivated restrictions to activity. However, deliberative limitation of activity has the potential to compromise autonomy by increasing social isolation and de-conditioning. Supporting older people with pain to be active requires sensitivity to the function of activity restriction, especially as a means of preventing deterioration.

chronic pain, qualitative research, activity, participation, older people

Introduction

Chronic pain—pain lasting 3 or more months—affects 62% of people aged ≥75 in the UK [1]. Despite increasing awareness of the importance of pain assessment and management for older people [2], pain is undermanaged in this group [3, 4]. Depending on the cause of pain, management strategies may include medication, self-management, surgery, psychological support or intervention, and exercise.

Keeping active is described as a central element of active or healthy ageing as well as important to self-reported quality of life [5], and is often a core part of pain management strategies. However, evidence suggests that older people living with pain may restrict, reduce or otherwise alter their physical and social activities [6, 7]. While this can enable a person to safeguard participation in their most essential or valued activities, limiting activity can be associated with poorer perception of independence [6], and participation restrictions [8]. Avoidance of activity is often explained using the ‘fear-avoidance’ model of pain, which views avoidance of activity as a consequence of fear of injury or movement, and resulting in disability and distress [9]. The fear-avoidance model has been applied to a range of chronic pain conditions in older people, with a view to informing treatments [10, 11]. However, this model is not intended to take explicit account of the broader context in which decisions about activity changes take place, nor does it take into account older people's own views about reasons for their behaviour.

Much literature has focused on describing the ways in which people living with chronic conditions adapt to a life with pain but relatively few studies report older people's own justifications for restricted activity. Those studies that do report that restriction is a strategy for managing pain and preventing damage, particularly in the face of uncertainty, and reflects age-related expectations [12–15]. Understanding reasons for older people's altered activity is not merely a matter of asserting that pain causes limitations; an understanding of the reasoned decisions of older people is needed. This is central to the design of appropriate, acceptable interventions that aim to provide better pain management for older people.

Methods

Design

This qualitative interview study constituted the second phase of a mixed methods project to provide an account of how older adults live with pain. Data collection and analysis occurred iteratively, guided by constructivist grounded theory (CGT) [16]. The aim of CGT is to construct (rather than ‘discover’) insights that are grounded in the data, and CGT provides a set of principles to guide the research methods.

Interviews

Participants were sampled from respondents to a community-based, cross-sectional survey conducted in the South West of England. A stratified sample 3,300 adults were approached through 11 GP practices covering rural and urban areas in South West England. Exclusion criteria for the survey included cancer diagnosis and significant cognitive impairment. The postal survey included a screening question to establish chronic pain (defined as pain that was experienced either all the time or intermittently for at least 3 months [17]). Those who identified themselves as experiencing chronic pain were asked to complete the questionnaire, which included items about characteristics of pain (e.g. severity and pain-related distress using numeric rating scales) impact of pain, and approaches to managing pain (including consulting in the orthodox and complementary/alternative sectors, medication use and self-care). Further details of the survey are reported elsewhere [18]. To achieve a sample for the qualitative study, respondents were asked if they would provide consent to further contact. Interview participants were purposively selected from the 165 respondents (aged 65 and over) agreeing to further contact.

Purposive sampling was used; initially a sampling frame was developed using the survey variables age (three groups) and acceptance score (high/low). Potential participants were selected from each of these groups to ensure that diversity within the sample could be explored (e.g. gender, pain severity score, geographical location). Later sampling was theoretical; informed by the ongoing analysis to develop and refine analytic categories. Potential participants were sent study information and a reply slip; those expressing interest were telephoned to discuss participation. The final sample size was guided by assessment of the sufficiency of insights drawn from the data [17]. Forty people were contacted and nine declined to participate.

Interviews were conducted (by F.M.) between January and September 2008 in the participants' own homes, lasting 45 min to 2 h. Written consent was obtained at the time of interview, and where possible interviews were audio-recorded. A topic guide was developed on the basis of a literature review and pilot interviews. This was used flexibly as an aide memoire, enabling participants to discuss experiences in detail and to raise issues of personal relevance. The topic guide developed as analysis progressed, becoming increasingly focused and incorporating specific prompts and probes to reflect the emerging analytic categories. The final topics included onset and trajectory of chronic pain, illness action, views on the solubility of pain and the future. Pilot interviews demonstrated that events over the entire life course could contribute to current pain experience and behaviours. Therefore, in addition to the topic guide, a ‘life-grid’ [19] was co-constructed in each interview. The life-grid aided recall and constituted a written time-line for key events in the participant's life history.

Analysis

Data were analysed using CGT [17]. Transcribed and anonymised interviews were read and audio-recorded interviews listened to for familiarisation. Transcripts were imported into the Atlas.ti software [20] to manage data and facilitate coding. Data were inductively coded as they became available. Codes were grouped thematically into categories and these were developed through subsequent data collection and analysis. After the entire dataset was coded, matrices were created to map categories across the sample, and interpretive accounts were written on the basis of these. F.M. conducted the analysis, with eight transcripts double coded by other team members to facilitate discussions and consensus about emerging coding and interpretation. Data relating to participants' decisions about activity are reported here. Analysis resulted in other significant categories, and a core category of ‘pain acceptance’, to be reported elsewhere. Categories are interlinked, and where appropriate, this is highlighted in the text. All identifiers for illustrative quotes are pseudonyms.

Findings

Thirty-one people took part; 15 men and 16 women aged between 67 and 92 years who had chronic pain for between 1 and 45 years (Table 1). When those interviewed were compared with the population from which they were drawn, the qualitative samples were similar to survey respondents in terms of demography and health care utilisation.

Table 1.

Participant characteristics (self-report, obtained from survey responses)

	Pseudonyma	Age (years)	Pain site	Diagnosis associated with pain	Pain duration (years)	Pain severity (past week) (1–10)
1	Robert	68	Shoulders, arms, hands, low back, both legs	Osteoarthritis; spondylosis	19	6
2	Barbara	71	Right leg, hands	Osteoarthritis; spondylosis	8	6
3	James	81	Right knee	Arthritis	20	6
4	John	73	Ankle, knee	Worn cartilage	10	4
5	Donald	85	Spine, shoulders, neck, arms, hands,	Damaged discs; arthritis	22	7
6	Patricia	69	Hips, neck and arms	Osteoarthritis	20	6
7	William	76	All over	Osteoarthritis	33	7
8	Joan	80	Arms, back, shoulders	Polymyalgia rheumatica	3	6
9	George	84	Left leg and foot, low back	Sciatica	43	8
10	Carol	71	Back, legs, neck	Fibromyalgia; arthritis	16	7
11	Joyce	68	Spine, all joints and muscles	None	19	9
12	Margaret	67	Legs, hips, feet, hands, wrists, knees	Osteoarthritis	12	3
13	Mary	92	Legs, back, knees	Arthritis	10	5
14	Frank	78	Chest, legs, neck	Angina; arthritis	12	2
15	Elizabeth	67	Back, and all joints	Osteoporosis, rheumatoid arthritis	28	7
16	Frances	75	Neck, head, knees, low back, shoulders, elbows	Disc degeneration	15	8
17	Anna	75	Spine, joints	Osteoporosis	14	4
18	Harold	80	Feet	None	3	7
19	Edward	67	R. Hip, knee, lower spine, hands	Osteoarthritis	6	4
20	Paul	71	Knee joints, hands, elbows, neck, ankles	Osteoarthritis	5	6
21	Joe	86	Left ankle/foot	Arthritis	32	6
			Right knee, Spine
22	Dennis	69	Knees	Osteoarthritis	4	5
23	Gloria	69	Right hip, low back	Tendonitis	15	1
24	Susan	86	Low back	Arthritis	1	5
25	Judith	81	Knees, shoulders, low back, shins, toes	Osteoarthritis	25	5
26	Gerald	68	Right hip, other joints	None	10	5
27	Linda	72	Abdominal, hip and spine	Crohns disease	23	6
28	Larry	80	Low back, groin	Rheumatoid arthritis	6	8
29	Terry	72	Left shoulder, low back	Ligament and muscle damage	20	2
30	Janet	77	Back, neck	Arthritis	45	5
31	Sandra	70	Knee	Arthritis; disc degeneration	2	6

^aPseudonyms were derived from records of popular baby names in the participant's year of birth.

Adaptation in the face of persisting pain, including changes in type or level of activity, was a common feature of participants' accounts. An overarching category, ‘living within your limits’ emerged as central.

‘Living within your limits’: restricting activity

All interviewees had altered or reduced their social and physical activities in some way (examples are provided, Supplementary data available in Age and Ageing online, Appendix 1). Changes could be seen as strategic and also as natural: inability to do things ‘just because’ of pain. Such changes often accumulated over time. Mary for example, recently stopped using public transport, and no longer visited friends. She said: ‘It's all happened gradually.’ Deliberate changes to activity, included substituting more physically demanding activities with more passive ones, or stopping some activities altogether, were viewed as appropriate and responsible responses to pain. Participant accounts demonstrated a reflexive approach to activity: getting to ‘know your limits’ (Judith, Box 1). ‘Living life within your own limits’ (Patricia) was seen as a way of managing pain and preventing disability. Analysis provided insight into the reasons for changes to activity levels, with two key concerns emerging: safeguarding function and avoiding medical interventions.

Box 1.

Participant quotes

(i) Safeguarding function by restricting activity

It [activity pacing] enables me to do things more long-term because, earlier, if I overdid it then I know the following day I'm out of the question for, you know, a day, and then perhaps pick it up the day after. And I don't want that, I want to be able to do a little bit every day and to keep going (Dennis, 69)

The worry of it all would be if I couldn't get around, if I was housebound or something like that. I can't get about like I used to. And I can't do what I used to. So I find if I take it steady then I'm OK. I try to reduce things so it doesn't aggravate the situation (Paul, 71)

(ii) Judith's account of restricting activity to avoid intervention

Judith (age 81) has arthritis and is focused on preventing deterioration. She describes activity in terms of learning her own limits:

If it degenerates it's going to hurt more and therefore you have to do more to try and stop it. ..You can't really put too much strain on it. So it's a case of, well, ‘got to be a bit careful here’. As I say, you know about just how far you can push yourself.

Judith had hip replacement surgery, and feels that ‘being careful’ has preserved them, thereby preventing the need for further surgery:

I just slowed down and took things quietly, and didn't attempt anything that I knew would put an extra strain on it. So they [hips] have lasted a nice long time that way. And just live quietly really. Why worry a thing if it's alright? And you know—you know your limits, your personal limits

Limiting activity is also a means of avoiding other surgeries for her arthritis:

I'm fighting against having those [knees] done, because I don't think that they've really been terribly successful in everybody I've spoken to, there's always something a bit dodgy. So I'm just keeping my fingers crossed they'll last out alright. And there again you see, you don't um do things that make it worse or you're going to cause a load of problems to yourself.

Safeguarding function

Participants described their desire to ‘carry on’ and live life independently for as long as possible, and a number expressed a fear of decline and loss of autonomy. However, chronic pain problems, particularly joint pain and associated diagnoses such as osteoarthritis, were often viewed as progressive (e.g. in Judith's account, Box 1), and pain could be triggered by relatively minor things. As such, self-imposed restrictions were a rational choice (Dennis and Paul, Box 1). Perhaps paradoxically then, ‘being careful’ and avoiding or restricting activity that might trigger pain was seen as a way of potentially safeguarding current and future functioning, and therefore autonomy.

Avoiding medical interventions

Many participants held an aversion to conventional treatments, including prescription pain medication and surgery. These could be seen as ‘the very last resort’ (Terry). To preclude the need for intervention, activities that risked triggering pain could be restricted or avoided. Paul, for example, says ‘I find if I start doing a lot of walking and things like that it gets worse. . . I might have to come back and take a couple of tablets, which I don't want to do’. In response, he avoided physical activity: ‘I don't push myself. I don't want to run a marathon and I don't want to climb a hill, because I think that aggravates the situation’. Judith's account (Box 1) exemplified limiting activity to avoid medical intervention.

Normalising activity restriction

Participants rationalised decisions to restrict or alter activity, often through reference to broader normative ideas around ageing. Descriptions of pain and functioning tended to also reflect views that were consonant with the discourse of disengagement and growing limitation in older age. Impairments and restrictions could therefore be legitimate and normal (Larry, Box 2).

Box 2.

Participant quotes

(i) Normalising activity restriction

You've had your three score years and ten and you've got that far, and anything after that is a bonus. I'm on bonuses: you can't change it, I can't take part in a 100 yards sprint, no chance. So you resign yourself to the fact, you know, you just take it easy and you'll be alright (Larry, 80)

I said to somebody the other day, ‘But it doesn't stop me doing anything that I've always normally done.’ And he said, ‘Well you've just said to me that you used to go for a walk on the moors for probably six or seven miles without a problem, and you can now only do three. So it's stopping you doing something you used to do.’ And I said, ‘Well I suppose if you look at it that way it probably is’. But I didn't really enjoy doing that distance anyway, and I sort of only do three, so I don't really see it as stopping me doing anything I used to do … I am coming up 68 so, you know, I am sort of moving towards the autumn of life, if I haven't actually reached the winter (Edward, 67)

The last walk I went on, that's a seven mile trail. I went on that, and the member of the committee who organises it, he or she is responsible for making sure nobody gets lost. Well they count them up after a while, and I was missing so they sent somebody back to find me, and I'd dragged behind simply because I couldn't keep up. And that is why I gave up, because I thought well I am now an embarrassment to them (Joe, 86)

(ii) Co-exisiting accounts of loss and uncertainty

I won't give in. I just won't. Because I think if I do, that's it, you know. I'm not ready to do that. I'm not ready to be an old lady (Margaret, 67).

I'm afraid that I may be drifting into that situation where I am vegetating and that's frustrating … I've come across a lot of different people and interesting people. So that's kept me active. I would like it to go on. And so the very fact that I can't get about so much is obviously restricting. I've had to give up my social life, which upsets me (James, 81)

The only thing that does upset me is that I can't do what I used to do. But then again, I suppose age would do that anyroad.

FM: Does that mean it's OK?

Well it's got to be hasn't it? Because there's nothing else you can do is there? I mean I used to love going into town and walking around. I'll go into town, but again I've got to keep finding somewhere where I can sit down. And I don't get half of what I want done because I'm wasting more time sitting down (Janet, 77) And when I went to the consultant a few weeks ago he said that really the bone density is keeping OK, you know, but he said, ‘Your real problem is the disc collapse’. Now I‘d always thought that as long as I didn't fall again I'd be alright. So I've got a lifeline here with the doings, pendant thing, you know, and I thought, well as long as I don't fall, I'll be alright. But this disc collapse is degeneration, and there's nothing can be done about it. And he said it can happen spontaneously. Well I didn't know that. But I do concern myself that it's usually pain means there's something wrong, doesn't it? So I think perhaps I shouldn't do as much as I do, like carrying heavy bags of compost up the top of the garden, that sort of thing (Anna, 75)

Changes to activity, as well as stopping activity, were also described in terms of adjusting what is an ‘acceptable’ level of functioning. Edward, for example (Box 2), has changed his activity levels but describes this as acceptable. Conversely, while social norms might make limitations easier to rationalise, the potential stigma resulting from visible loss of functioning was a reason for restricting activity in some (Joe, Box 2). Joe additionally draws on normative ideas when reflecting on giving up activities, saying; ‘I imagine that it would have been as a result of age anyway’.

Co-existing narratives: perseverance and frustration

Participants' accounts also demonstrated the significant efforts to persevere with activities, particularly those seen as essential in terms of personal autonomy (e.g. Paul, Box 1). However, pain was seen as inherently restricting and reducing activity levels was often seen as a necessity. Consequently, although changes were rationalised they could also be distressing, and careful negotiation was needed to balance restrictions with ‘carrying on’. Resistance was evident even in accounts of those participants who strategically restricted activity as a means of safeguarding function, most notably in those who felt that restrictions were unavoidable. This was particularly so in the case of loss of social contact experienced by many participants, with such loss associated with decline (James, Box 2). Physical limitation, as well as impacts on social activity, could be a source of frustration. Those who found pain unpredictable, had more recent onset of pain, or felt that their independence was under imminent threat, were more likely to express frustration.

A small minority of participants gave forceful accounts of needing to keep active in spite of pain. Although still describing restrictions associated with pain, these changes symbolised surrender to decline rather than a means of safeguarding autonomy (Margaret, Box 2). Rejection of age-related norms wasn't restricted to younger participants, however; resistance seemed to be associated with an earlier stage in the pain trajectory, a sense that restrictions were imposed on them by pain, or that norms were used to ‘explain away’ impairment by health care providers. The relationship between activity restriction and pain was also dynamic. Anna (Box 2), for example, has found that making changes to her activity has failed to prevent further problems; consequently, she considered limiting herself still further.

Discussion

This qualitative study examined why older people living with pain made changes to their activity levels, specifically restricting activity, described as ‘living within your limits’. Decreasing physical activity and social participation were described as an inevitable consequence of pain, and as ‘natural’ in older age. Strategic restrictions constituted a pragmatic approach to safeguard function and prevent deterioration, and to prevent the need for medical intervention. Despite this, loss of social contact could be very distressing, and physical constraints frustrating. Additionally, some participants resisted normative views of ageing, viewing activity restriction as a form of resignation.

The study benefitted from the use of a survey to purposively sample participants. The sample size was appropriate as the later theoretical sampling ensured that categories were fully explicated, and the findings are likely to be theoretically transferable to the wider population [21]. In-depth interviews provided rich and detailed accounts of participants' experiences. The study was limited to older people in one area of England and all participants described their ethnicity as white British. Future research would beneficially explore diversity across the UK. Additionally, future longitudinal research would enable exploration of the dynamic nature of living with pain, including changes to activity over time and their consequences.

Older people's reduction and modification of activity as a means of coping with persistent pain in older age has been reported previously [5, 6, 12–15], and our study adds to this literature by further illuminating how and why this happens. Tension was clear in the need to ‘carry on’, and also to impose restrictions to prevent pain. This was an ongoing, reflexive process of negotiation, with participants continually evaluating experience in the context of relative uncertainty. Many participants framed restriction in the context of age-related norms. Such narrative arguably enables older people to maintain a sense of biographical coherence in the face of illness [22], but subscription to such norms was contingent on various contextual factors, and timing (e.g. stage in the pain trajectory) [22, 23].

Continued participation in valued activities is important in older age [24–26], but our study indicates that self-imposed restriction of activity is a rational element of older people's attempts to prevent further pain, associated disability, and subsequent medical intervention. These efforts seek to safeguard the individual from decline and preserve autonomy. However, this can paradoxically result in decline as reducing or stopping activity has the potential to lead to de-conditioning, disability and social isolation. A fear of autonomy loss was also evident. These findings are consonant with a recent review of the fear-avoidance model, which highlights how avoidance of activity has an adaptive function but may be problematic in the longer term [27]. This model presents a rational cognitive-behavioural model of activity avoidance within which people alter behaviour because they fear pain and (re)injury. Personal context is increasingly recognised as important in the application of a fear-avoidance model of chronic pain [27]. Our study adds to this by presenting the reasons older individuals themselves give for altering activity. It also situates it in a wider context to include avoidance of interventions and congruence with social norms, and shows how activity restriction can paradoxically result from a desire to preserve functioning.

The detrimental consequences of reduced activity and participation are a key concern for policy and practice. The restriction of activity is at odds with recommendations for pain management, however as reported here, is a prolific approach that older people may view as necessary. In this context, there is little room for conventional approaches to encourage activity to thrive and interventions often fail to have long-term impacts on behaviour [28, 29]. It is likely that the success of interventions to sustain or increase activity and participation depends on consideration of the challenges older people with pain face when negotiating ways to maintain autonomy and function. This requires us to reframe seemingly paradoxical behaviour, and view older people as active agents engaging in rational and ongoing decision-making processes [30]. In doing so, we allow for flexibility to work within older people's own contexts.

Key points

• Older people experiencing pain may change or restrict social and physical activity.

• Restricting activity is viewed as a necessary means of preventing pain and (re)injury that potentially threatens autonomy.

• Although restriction may be normalised, tensions exist when losses resulting from restricted activity are experienced.

• Interventions to increase activity in older people with chronic pain need to take these concerns into account.

Authors’ contributions

Study design: F.M., J.A., R.G.H.

Data collection and analysis: F.M., with input from J.A. and R.G.H.

Manuscript preparation: F.M., J.A., R.G.H.

Conflicts of interest

None declared.

Ethics approval

Ethical approval was granted by the South West Multicentre Research Ethics Committee 06/MRE06/30, and Research Governance approval from the relevant Primary Care Trusts.

Funding

The research was undertaken as part of a PhD (author F.M.) funded by the UK Medical Research Council (MRC). F.M. prepared the manuscript during a postdoctoral fellowship funded by the Economic and Social Research Council (ESRC; ES/I03808X/1).

Acknowledgements

We would like to extend our gratitude to those people who contributed to the study as research participants. Thanks also to Paul Dieppe for giving support and advice, Catherine Elliot for transcribing, Sue Williams for administrative support, and Briony Maitland for double coding and administration.