Abstract
This article focuses on two small groups of adult cystic fibrosis patients (from a larger sample) who, for very different reasons, do not self-care. These two distinct counter-narratives may be located at the extreme margins of a continuum of responses to the demands of body and society. They are described and contrasted here as controlled and chaotic and are dominated by ‘supportive’ and ‘unsupportive’ voices respectively. The patient’s own voice, by way of contrast, is often silent or silenced by these dominant others. Despite the loss of self that becomes evident in these narratives, limited sites of resistance remain as both sets of participants sought to disrupt, parody and subvert expectations to self-care with stories of ‘malingering’ and ‘self-neglect’. Finally, some practical suggestions are provided for social workers to engage patients whom might otherwise be regarded as ‘difficult’.
Introduction: Self-care and cystic fibrosis
Cystic Fibrosis (CF) is a multi-organ disorder and self-care regimens are unusually demanding. In addition to regular two-week periods of intensive intravenous (IV) therapy (usually in hospital) treatment typically involves a complex mixture of oral medications, nebulizers, chest physiotherapy, rigorous exercise and a high calorie diet with supplements. If undertaken exactly as prescribed, routine treatments can take up to two hours a day to complete (Sawicki et al., 2009). For adults in particular, self-care is often complicated still further by the need to manage common co-morbid conditions such as CF related diabetes (CFRD) and burkholderia cepacia complex (BCC) which is a highly transmissible infection that can lead to rapid deterioration and requires segregation when hospitalized.
Until recently the majority of people with CF were not expected to reach adulthood but improvements in diagnosis and treatment mean that it can no longer be regarded as a childhood disease. The ‘standardization of care’ and implementation of best practices are, according to the Cystic Fibrosis Foundation (April 2006), key to this but the fact remains that recommended daily regimens are seldom undertaken as prescribed. Indeed, the ‘standardization of care’ prized by clinicians is often the very thing that many patients in this current study and elsewhere resist (see also Badlan, 2006).
There are many well documented reasons why people with CF do not complete their regimens as prescribed. The unpleasantness of treatment, degree of infringement on life and embarrassment have all been documented as barriers to self-care (Arias Llorente et al., 2008; D’Angelo and Lask, 2001; George et al., 2010; Gotz and Gotz, 2000) but perhaps a little surprisingly forgetfulness appears to be the most significant issue (Arias Llorente et al., 2008; Pfeffer et al., 2003). Not everyone, of course, is passively or unintentionally ‘non-compliant’. Many CF patients in fact actively and expertly self-regulate by tailoring or substituting treatments according to their own assessment of need (Badlan, 2006). Some simply, and somewhat reluctantly, comply with medical prescriptions while still others conceal their illness and conform to more socially acceptable aspects of treatment through strict exercise and dietary regimens and other alternatives (George et al., 2010).
This research emerged as a result of anecdotal observations made by the first author (interviewer) over several years while working as a medical social worker in a regional CF unit. In particular, it was noticed that self-care practices varied enormously among patients despite receiving relatively uniform advice and guidance. A systematic qualitative study was therefore devised to explore varieties of self-care. It provided a qualitative framework for understanding different responses to illness and its treatment (described as compliance, conformance and concordance) and is reported elsewhere (Greenop et al., 2011). This article, however, will focus on two small but largely ignored groups of adults within this cohort who, for very different reasons, did not fit readily into this analysis or any of the established alternatives suggested in the CF literature. In many respects, whether by choice or circumstance, these particular participants positioned themselves in direct opposition to them.
Background: The ‘self’ in self-care
Though largely ignored in the CF literature, there is a fairly well-established link between identity and self-care. While many have observed this clinically and anecdotally over the years, Adams, Pill and Jones (1997) were perhaps the first to provide a coherent explanatory framework connecting different patient identities with distinct medication practices. The authors proposed the new construct of identity work in preference to the usual stigma-based explanations which, they argued, imply passivity and an imposed identity. Identity work, by way of contrast, draws attention to the way people interpret social identity as patients and manage to reconcile this with other social identities. Put simply, they found that where illness is integral to a person’s identity, medication practices are facilitated and where it is not, medication practices are compromised through avoidance and/or denial. Thus, Adams, Pill and Jones (1997) conclude, ‘respondents’ attitudes to medication and medication practice are intimately linked to their beliefs about their condition and coping strategies which, in turn, are associated with the extent of their acceptance and rejection of the identity of “asthmatic”’ (p. 199).
Although not everyone experiences illness and its treatment as stigmatizing, this does not itself mean that stigma is not real or relevant to the performance and analysis of self-care. Ware, Wyatt and Tugenberg (2006), for example, more recently observed that stigma in fact leads to a tension between sociability and health, which manifests itself through skipping doses, dissembling and/or disguising the fact that one is taking medication. Broom and Whittaker (2004) similarly suggest that self-care is intricately linked to the maintenance of a creditable self. This creditability, they argue, draws on current moral understandings of individual responsibility to be as healthy as possible, thus legitimating those who actively self-care as ‘deserving’ and those who do not as ‘deviant’. As Ballard and Elston (2005: 238) also note, ‘With the new emphasis on self-care comes an emphasis on the moral obligation of individuals to take active steps to prevent and treat ill health’. This moralizing may be seen most clearly in the self-care literature’s continued analysis of ‘poor’ adherence or ‘failing’ to comply or ‘achieving’ concordance, but most significantly of all it may be observed in the still more pejorative language of patients who often describe themselves as wicked, foolish or naughty (Broom and Whitaker, 2004).
While many people with chronic ill health manage to overcome stigma in their everyday lives and maintain creditable identities, for some it is a destructive force diminishing the self (Charmaz, 1983). Indeed, for a few patients in this study (and presented here), the experience of ill health appears to be so destructive that they almost ‘disappear’ entirely from their narratives. Dominant others, whether ‘supportive’ or ‘unsupportive’, take centre stage and participants cease to care. The loss of self therefore entails a concomitant loss of interest in self-care. Whether talking about universal or disease-specific need, the desire to look after oneself is almost completely absent in the following accounts.
Method
Narrative interviewing is utilized by many qualitative health researchers because it allows patients to give voice to their experience in a way that lies outside the domain of biomedicine (Fraser, 2004; Hyden, 1997). As Blaxter (2004) has additionally pointed out, the overarching theme of any personal narrative is that of identity (in both its construction and performance) so this approach also promised to offer a better understanding of the ‘self’ in self-care.
Interviews with participants were constructed and administered to draw out personal stories. They consisted of a mixture of closed, semi-structured and open questions intended, firstly, to try and establish routine practices and then, secondly, to explore disruptions to these. That is, rather than simply asking direct questions (e.g. why don’t you take your antibiotics?) participants were encouraged to talk about specific examples or disruptions to their routine practices (e.g. could you tell me about a time when you didn’t do [or did] your physiotherapy?).
Analysis focused on complications that emerged in participants’ routine narratives and how these were resolved. Following Hernadi’s (1987) hermeneutic triad through a process of explication, explanation and exploration analysis passed from an initial naive understanding of the data to a more mature interpretation. Explication involved summarizing and comparing the interview texts to identify similarities and differences in both style and content. In the explanation phase the naive understanding was checked and revised through more detailed reflective exegesis. This paid particular attention to performances of self, background voices and also the role of the researcher in the interviews. The final exploration phase of analysis made links with wider literature, discourses, policy and practice which in turn helped revise earlier hunches, personal prejudices and interpretations of the interview texts.
As much previous research can be criticized on the grounds of selection bias (for example by recruiting ‘compliant’ participants who regularly attend clinics), effort was put into approaching as diverse a sample as possible. In order to minimize exclusion, patients were not approached by letter or telephone but were invited to participate in person by CF nurses during outpatient visits or inpatient stays. This more purposive and direct approach led to an unusually high response rate (80%) and a wide diversity of participants with an equal number of males and females: 40 in total. There was also a mix of professional, skilled and unskilled participants with a range of employment statuses, family backgrounds and social circumstances. The 20 female participants had a mean age of 24.5 (range: 18–39) while the 20 male participants had a mean age of 25.75 (range: 18–43).
Potential interviewees were offered a choice of two locations: home or hospital (in private rooms). The majority of interviews took place during either planned or unplanned inpatient stays. The latter was usually the result of exacerbations or emergency admissions and proved particularly helpful for engaging with people who do not regularly interact with healthcare professionals (or researchers). This may also explain the unusually high levels of ambivalence towards self-care reported here. Three participants from the total sample waited until after their next outpatient appointment while four were interviewed at home. All interviews were recorded and lasted from 45 minutes to four hours. Three of the longer interviews were stopped and continued at a later date (one within the week and two several months later; most others had short breaks for a variety of reasons). Ethical approval was obtained from the Local NHS Research Ethics Committee (REC reference number: 04/Q1505/148) before data collection started and each interview was fully transcribed by the first author. All personal data was removed during transcription and participants were provided with pseudonyms. Only one interviewee (Matthew) was known to the first author through previous social work involvement.
Group 1.
Based on the CF Trust’s (2000) classification system: Severe (FEV1 less than 40% predicted); Moderate (FEV1 40–69% predicted); Mild (FEV1 70–89% predicted); Normal (FEV1 greater than 90% predicted).
Based on the Registrar General’s Social Class system: I Professional occupations; II Managerial and Technical; III(N) Skilled non-manual; III(M) Skilled manual; IV Partly-skilled; V Unskilled.
Group 2.
Analysis
There is no shortage of narrative health research to facilitate analysis but these tend to focus on articulate stories told by expert patients and seldom capture the variegated speech of the field (Czarniawska, 2004). It was however possible to adapt and apply insight from a number of sources to help better understand the seldom told and even less frequently heard accounts described here. Gergen and Gergen (1983) provided a starting point suggesting three core macrostructures for analysing narratives: progressive, regressive and stability. While simplistic, applying these structures to this current study, it was noticeable that the more ‘compliant’ participants purported to be, the more stable and uneventful their narratives became and the more ‘non-compliant’ they claimed to be the more unstable and eventful their narratives appeared. It was also at the extremities of this continuum that the usual developments in character and plot (such as overcoming, battling, personal transformation and so on) were largely absent. Not only did these accounts fail to fit within the main framework of analysis, therefore, but they presented the authors with the additional problem of having to make sense of what appeared to be distinctly un-story-like stories.
According to Gergen and Gergen (1983: 267) stability narratives demonstrate the ‘desire for the social world to appear orderly and predictable’. These are the most understated and least dramatic of all as nothing worth reporting ever seems to happen (Robinson, 1990). However, when attempts to reassert order and predictability fail a different kind of narrative emerges. Frank (1995) describes these in their most extreme form as chaos narratives which feed on the sense that no-one is in control. In these accounts, Frank notes, ‘the modernist bulwark of remedy, progress, and professionalism cracks to reveal vulnerability, futility, and impotence’ (p. 97). In fact these are not stories at all but ‘anti-narratives’ or ‘tragedies without a plot’ as narrators become lost in the over determination of their troubles.
Although these two narrative structures provided a useful framework for analysing un-story-like stories, they were still not entirely satisfactory. According to Robinson (1990), for example, the resemblance of ‘stable narratives’ to medical case histories indicates that ‘the code and culture of biomedicine is the key to unlock their evaluative meaning’ (Robinson, 1990: 1178). However, this did not adequately capture the high levels of dependence on informal networks that became evident. The idea of Controlled Narratives was therefore developed as an alternative category of analysis to capture the presence of other dominating voices. Parents in particular had more than a supporting role in these narratives not only questioning the code and culture of biomedicine but defending narrators against anyone who threatened to undermine the stability of their care-free worlds.
Explication
Controlled and Chaos Narrative.
As the exemplars below show, Controlled Narratives contained more questions than answers so interviews often felt more like interrogations. Chaos Narratives, by way of contrast, provided little space for the interviewer as every question seemed to trigger one painful story after another with little time to pause and reflect. Either way, relatively little was gained from focusing on the issue of self-care. By attending to the wider context, however, the lack of control experienced by participants became everywhere apparent – leading to prolonged dependency for one group and inescapable helplessness for the other.
Reflective exegesis: Controlled Narratives and ‘malingering’
Medical regimens
Of particular note in these narratives was the lack of resistance to their illness and its treatment which was generally regarded as ‘easy’. However, this is due to assistance from parents, partners or siblings. As the following dialogue with Simon indicates, this was not immediately obvious when talking about medical regimens as the lack of change was initially perceived as ‘hyper-compliance’ by the interviewer. Simon (below) has just briefly described his daily routine as follows: ‘I wake up in the morning, have my physio, my nebulizers and my tablets. I come in of an afternoon, take my tablets and then of a night, just before I go to bed, I have my tablets, nebulizer and physio’. The conversation continued: I: Um, does your routine ever change significantly? P: No, not really. I: It’s pretty much the same day in, day out? P: Yeah. I: Is there any difference between how you’re advised to take your medication and how you actually take it? P: No, just take them as they say. I: You take them as prescribed. P: Yeah. I: Do you ever disagree with any of the doctors? P: No, whatever they say … is right really. I: Do you ever adjust any of your medication? P: No, never. Just whatever’s there.
Simon’s responses are succinct and uncomplicated reflecting many other accounts of compliance, namely, having an extensive and apparently unchanging routine, concealing treatment (i.e. coming home to take his tablets) and listening to experts (i.e. accepting the correctness of his doctors’ advice). However, Simon is also extremely passive because he has his physiotherapy and takes ‘just whatever’s there’, indicating, what later became increasingly apparent, that someone else is helping. Britney was even clearer, ‘I get up, the neb’s at the side of my bed, so all you’ve got to do is switch on a button. Tablets are on the table when I go down or they’re in the cupboard so you’ve just got to get them out. And like the insulin’s just there. It’s nothing, that’s it’. While informal carers often provide background voices in these accounts, as complications arise they quickly take centre stage, acting and speaking on behalf of the patient, as Ruth indicated, ‘[Boyfriend] will do my tablets sometimes, if I’m really tired, or I don’t feel too clever, [Boyfriend] will do them for me’. Similarly, when pressed about whether she ever went for long periods without doing her nebulizer, Jennifer responded: ‘I do generally do them every day. That’s kind of … my mum and dad were always quite strict like that’.
Relations with doctors (as with everybody) were generally unproblematic and sometimes even idealized as these participants, like Simon (earlier), and Britney ‘just listen’, and say nothing in response ‘because they never ask’. Only Ruth dared to question the CF doctors, stating ‘I’m not afraid to ask questions, or query what they are doing’ but as the following illustrates this merely involved blocking their questions and avoiding responsibility: Like, they’ll say to you, ‘What do you think you need?’ Well, I’ll just say, ‘You’re the doctor, you tell me’. He’ll say, ‘Well, what do you feel you benefit from?’ So he’ll ask me what I feel better with, then I just turn it back onto him, coz I hate making decisions. That’s why I turn it back onto him and say ‘You’re the doctor, you tell me what I should have’.
While these participants normally give the impression of hyper-compliance, they did occasionally (and unpredictably) also resist the demands of healthcare professionals particularly where they threatened to disrupt their otherwise care-free existences – often without any kind of discussion or rationale. Examples include Jennifer refusing to have a portacath implanted because she does not feel comfortable with it, Ruth pulling out her gastronomic tube because she did not like it and Britney refusing IV therapy so that she could go out with her friends which, she explained, caused conflict with the CF Consultant: Um, [CF Consultant] says I put my lifestyle first. Coz he says ‘You need IVs’ and I say ‘No I’m going somewhere tonight. No, no, no, no, no, no, no’. But so you should have a life as well you can’t just … I look at it … you should have a life and you shouldn’t let it hold you back because you only live once, you may’s well make the most of it.
Britney had previously described a particularly passive stance during consultations, never disagreeing, just listening, and not talking about her treatment because ‘they never ask’. Here, however, her performance of hyper-compliance unexpectedly and spectacularly breaks down. While Britney does not disagree with her consultant’s evaluation, the implication is that he does not see beyond her need for IVs (a need she too appears to accept). Importantly, however, there is no negotiation as Britney asserts only her right to do as she pleases: ‘you should have a life … you shouldn’t let it hold you back … you only live once … you may’s well make the most of it … ’ Britney’s defence is heartfelt but the list of justifications she recycles most likely come from elsewhere (she seldom used her own words) but clearly immediate self-gratification is her goal even if it means jeopardizing her future health and displeasing her doctor.
Behavioural regimens
Ambivalence towards self-care became most pronounced when discussing physical activity. This was typically expressed through a lack of interest in anything that requires personal effort, so exercise was largely avoided because they ‘can’t be bothered’ (Britney, Simon and William) or ‘it gets boring’ (Jane and Jennifer). Physical activities for these participants may therefore be best described as leisurely and included such things as driving (Simon), computer games (William) and, for females, shopping and general socializing. Only one (Ruth) appeared to have (previously) done any planned exercise at all but explained ‘I just stopped doing that. I just, I just got lazy, more than anything’.
Diet too was characterized and determined by ambivalence as participants sought neither to gain weight nor lose it – it was simply a matter of taste. Simon’s father, for example, cooks whatever he asks for and he will not take supplements because they are ‘horrible’. While Britney and Ruth both ate what they wanted the latter started eating fruit rather than chocolate because she had lost her sweet tooth. William snacks on crisps and sweets but will not take additional vitamins or high energy supplements because he can’t stand them. ‘I think [the CF team] have given up trying to make me take them’, he concluded, ‘coz that’s one thing I do put my foot down on taking’.
Physiotherapy was regularly and routinely undertaken by all but one participant in Group 1, though again this appears to be done for them in the form of chest percussion rather than self-administered flutter devices or autogenic drainage, as preferred by most other participants in the wider study. It should be pointed out that this too was not always explicitly stated (or asked) but, for example, when querying about how the recent divorce of his parents affected Simon’s self-care, he responded that it didn’t ‘coz I could just sit there with my machines and that, and get my physio’. Unusually, this particularly disruptive aspect of treatment causes little concern for these participants, as William, who is helped by both mother and father, indicates, ‘The physio doesn’t bother me really, it’s just like, say, if I’m in I’ll have it, if not, I can’t’. Jennifer and Jane, who are sisters, will sometimes do it themselves or indeed sometimes help each other but usually their mother does it for them. Ruth used to get help from her parents but when they stopped doing her physiotherapy, it stopped happening. On the occasions when physiotherapy is undertaken, however, her boyfriend or mother will do it. Britney was again much more forthright, stating, ‘ … your physio’s the easiest one. All you’ve got to do is lie there’.
Attending to the wider context
While interviews with this group of participants were usually tense, life with CF was invariably portrayed as idyllic. Personal goals and desires centred upon immediate self-gratification: ‘I like being a lady of leisure’, Britney for example stated when justifying her not working. Family members in particular were caring while others, even strangers, affirmed them: ‘I know literally nearly everyone in the town’ stated William, ‘so it doesn’t bother me’. As Ruth added, ‘I just got to a point where I don’t care what people are thinking anymore. Coz I think if you did that then you’d suffer really bad. So I just don’t care anymore, people think what they want to think’. This care-free detachment from the demands of body and society is not without rationale, therefore, as patients could not only minimize suffering but also enjoyed the secondary gains derived from being ill (Radley, 1994).
Few substantive themes emerged in these narratives beyond the enjoyment of leisure. However, this was clearly more problematic for the two males than it was for the females. Simon and William therefore both expended considerable time and energy justifying themselves as active subjects who can do more but choose not to. As Simon stated, ‘there are all sorts of different things I can do, I just don’t do it’. Like many teenagers William spends his days ‘Playing on the computer, lying round watching telly’ which, just preceding the following extract, he put down to his laziness: I: Now this is going to sound like a silly question, but why are you ‘lazy’? What do you put that down to? P: I’m probably too dependent on people, on my mum, and that’s why I want my own flat, to see if I can do it. Coz if I did, I wouldn’t be allowed to lie around, I’d have to clean my own house and everything. I don’t blame my mum for my laziness, I blame me. I: I know what you’re saying, and it’s perfectly understandable … How does your dependency look? How are you dependent on your mum? P: Everything. Everything, and I don’t want it any more. Like if she doesn’t lay my tablets out, I won’t take them. But that’s why she does lay them out, so I will take them. I’m just a lazy person when it comes down to it.
For females in this study inactivity could be more readily reconstituted as leisure; for males, however, it was regarded as failure. William wants to change and at least manages to construct a possible identity in a possible world in which he is an active subject taking responsibility for his own life. He explicitly connects his (current) laziness with an over dependence on his mother but refuses to blame her because ‘if she doesn’t lay my tablets out, I won’t take them’. There is, in the final analysis, no-one else to blame but himself. It is just the way he is. End of story.
Reflective exegesis: Chaos Narratives and ‘self-neglect’
Medical regimens
In Chaos Narratives, participants were unapologetically forthright in their insistence that they did not self-care at all apart from some occasional lung clearance. Unlike the previous group, however, nobody appeared to ‘care’ – not even family or friends. Consequently the burden of responsibility lay with professionals, particularly during hospitalization following an exacerbation. Indeed, intensive IV therapy was the only effective treatment for these participants and was used quite strategically. Matthew, for example, did not take his daily antibiotics while at home ‘so that when I do go in [for intensive IV therapy], it gets a big kick then to kill the infection’. While Kenneth was ‘not really convinced’ about his daily regimen he, again, felt the IV therapy worked, adding, ‘[When discharged] I’ll go back and I’ll stop taking them probably. But then I won’t feel any worse because this [IV therapy] will have killed off the infection. And it’ll be a year, hopefully a year or more before I’m on IVs again’. Ian similarly believed that regular IV therapy had in the past kept him in ‘tip-top condition’ but now blames not being allowed to access them for his recent decline in lung function.
Their dependence on hospitalization as their main source of treatment, however, means that admissions can be fraught with difficulty and can lead to ‘wars’ with staff, as Elaine put it. Whether it is refusing to eat (necessary to facilitate IV antibiotics), discharging oneself from hospital or failing to attend clinics, all of these patients have been accused of self-neglect: ‘He said “We could’ve done this, we could’ve done that. You’ve caused all this damage and we could’ve controlled it earlier”’ Kenneth recalled.
Behavioural regimens
Elaine is probably the most physically active of these participants – swimming once a week and taking a 10 minute walk every day. Both Ian and Matthew lamented the loss of their physical prowess and while Ian will no longer go to the gym ‘because of the way people look at you’, Mathew simply sits and stares at his equipment at home: I go [upstairs] and just look at them and I go ‘I can’t do them’. So that’s like a big slap in the face for me, so that’s the most hurtful thing for me that, that can happen. You know, so that’s a depressing thing as well with me.
Kenneth too was previously very active and is a qualified weight trainer. Unlike the others, however, he is unconcerned about weight loss. Despite his capacity to do much more, Kenneth just sits at home ‘watching the rabbits and the pheasants run round in the garden’ – a sign, perhaps, not so much of contentment as the lack of desire associated with ‘chaotic bodies’ (Frank, 1995). ‘Maybe I need a body image problem’, he quipped.
Elaine is not only diabetic but also anorexic, so diet and nutrition were clearly a complex matter and hardly managed at all. She eats when she feels like it, which may only be a binge every three or four days. Like her male counterparts she constantly parodied dominant gender ideals and, indeed, seemed intent on destroying every vestige of womanhood ‘I started to not go out, not wear skirts, not wear tops that would, you know, be revealing or anything and I just wanted to feel very unattractive and one thing with the CF it’s very, very easy to lose weight’. All three male participants were vehemently against eating the ‘junk food’ (as Ian put it) they felt they were expected to eat. However, Ian supplements his ‘two healthy meals’ (when he has the money) each day with a high energy drink in the morning while Matthew also uses supplements but only to replace meals when he has no appetite. They are not themselves good for anything other than ‘to put a bit of fat on’ but Matthew wanted muscle. Indeed, despite his now ‘crap’ appetite and weight loss, Matthew continues to eat the same kinds of food he always has ‘That’s why I can’t put weight on’ he suggested, ‘coz I tend to eat more healthy foods than fill my face with pastries’. Kenneth simply revelled in the many times he has defied conventional (CF) wisdom: ‘there’s no such thing as a fat CF’ Kenneth was told – when he is clinically obese; ‘you can’t have high cholesterol’ the dietician added – when he has got a documented history of it going up. ‘They often forget that you’re an individual. You all need to eat fatty food and you all need to gain weight’ (emphasis in original) he mocked.
Interestingly, perhaps because of their inactivity, these participants sometimes did physiotherapy, of sorts, at home. Elaine, for example, does Autogenic Drainage which, she explained, ‘is just breathing exercises’ while Ian has ‘a morning cough’. Kenneth had a similar evening coughing ritual when alone in the bathroom which he calls ‘physiotherapy’ and, he similarly explained, ‘it’s just a way of clearing mucus from your lungs’. Matthew did no other treatment apart from physiotherapy and nebulizers about twice a week, again, like the three others, to ‘try and clear my chest as well as I can’. Needless-to-say, this is done without any assistance because, as Matthew again added, ‘it’s just something I don’t feel comfortable with’. This concern seemed to apply to both professional and informal contexts preventing Ian and Elaine from attending the hospital gym. Despite having his own room in the CF Unit, Kenneth struggled to do physiotherapy, stating, ‘If I haven’t got privacy and I can’t maintain privacy, then I can’t really do physio’. Unlike hospital staff, however, his wife at least respected this: ‘My wife won’t go upstairs while I’m doing physio. Occasionally she’ll have to, but she knows I function better when I do it in private’.
Attending to the wider context
As with the previous group of participants, there is relatively little insight to be gained from simply focusing on the issue of treatment. In contrast to Controlled Narratives, however, exploration of wider issues shows that ‘chaos’ dominates and no-one seems to be in control as participants become lost in endless problems caused by countless troubles. Whether doctors, family, friends or even complete strangers every encounter becomes complicated as their illness spoils their lives and their lives spoil their illness. This can be seen in the following story Ian told immediately after describing an instance when he was refused admission to hospital for treatment which he felt he needed. ‘You’re only a little voice’ he concluded before immediately going on to describe another quarrel: You know what did my head in yesterday? A taxi driver let me off, he didn’t even let me off, he give me £5 change out of a £20 note for a taxi back from [Place], right, and I said ‘No’e are mate, it’s supposed to be 16 quid’. He said, ‘No, you’re in hospital mate, I don’t want to do that, you’re not well’. I said, ‘What mate? You’re the taxi driver and I’m the customer’. Know what I mean? ‘I’m paying you the money. Take the other quid’. He said: ‘I don’t want to mate’. I went, ‘I don’t want no sympathy vote’. He went, ‘Well you’re going to get sympathy from me’. That cheesed me off but I also liked the fact that, he thought about it, that’s his way of saying, ‘I feel for you mate’, you know what I mean, but then it cheesed me off, but I can see where he’s coming from. I’m not mad at him or anything, but at the spur of the moment, I wasn’t pleased that he did that to me.
Before Ian even started he prefaced his story with the clear instruction that this incident also did his head in. Indeed, his account not only starts without equilibrium but ends without resolution: ‘I wasn’t pleased that he did that to me’. Ian’s intention was, presumably, to demonstrate that a taxi driver (by recognizing that he was unwell) has more insight than his doctors, however, this introduces another complication: he does not wish to be recognized as unwell outside the hospital where he is a ‘customer’ and not a patient. That is, the recognition (and offer of help) that the taxi driver gives is, in the end, just as unacceptable as the lack of recognition (and help) he got from the hospital. His narrative therefore, leads only to further confusion: both offending and pleasing him at the same time. Ian does not know who he is other than he is not who others think he is. Impossible to satisfy, all efforts to comfort or help him and others like him end in failure. Unfortunately, the failure is usually attributed to them.
Whether it is doctors not recognizing Ian as genuinely ‘sick’ or taxi drivers not recognizing that he is a ‘normal’ customer, the real problem for him, and the other three participants in this group, is that he has no way out of the mire of discrediting and dehumanizing labels surrounding him. While these labels stuck, however, participants were able to make use of comedy, tragedy and satire as storytelling devices – neither dismissing nor denying their discredited status but parodying, subverting and sometimes even enjoying it.
Exploration
It is convenient and simplistic to label those who transgress normative expectations to self-care as ‘deviant’. It is indeed tempting to follow Parsons (1975), as many do, and conclude that those who have no desire to get better are simply ‘malingerers’. Even if patients describe themselves this way, however, it is clearly not the whole story. As already indicated, it was the domination of informal carers in Controlled Narratives that led to such high levels of expressed or implied dependence. It is carers, rather than health professionals, that legitimate their sedentary lifestyles too and sustain inactivity. While not always able to avoid Parsons’ charge of ‘malingering’ these participants were at least sometimes able to play with it so, rather than getting well, they simply focused on making the most of life with CF. This is not, however, a luxury afforded to everyone. In Chaos Narratives participants freely admitted to their self-neglect and sometimes even actively sought their own demise but, again, this was not the whole story. They are not simply ‘problem patients’ but people with problems and CF was not always the most pressing issue before them.
Whether describing laziness or self-neglect the ‘failure’ of patients to adopt culturally preferred stories and, in particular, become active consumers of healthcare means that inactive patients are becoming increasingly marginalized. They are, in turn, mistrustful of health professionals and engagement becomes impossible. Well-meaning professionals may try and push patients out of their ‘narrative wreckage’ but this will simply laden them with additional burdens and compound their sense of failure still further (Frank, 1995; Radley, 2002). Whether being mollycoddled by carers or stigmatized by strangers, it is against these burdens (beyond illness and its treatment) within the wider social context of life that these narratives were constructed and performed and it is these burdens that demand our attention.
Limits of the Study
There is little doubt that these 10 interviews (more than others in the wider study) were greatly influenced by the (perceived) social differences between the interviewees and interviewer. This distance is not necessarily a limit to research but the interviewer’s insensitivity to the resulting dynamics at times impacted on the quality of interaction and disclosure. Examples of this include relentlessly pursuing a specific research agenda (which some participants deemed insignificant) while at other times ignoring unexpected responses (which some participants deemed significant). Either way, important opportunities for genuine dialogue may have been missed. However, it is hoped that the framework suggested here, albeit retrospectively, may help sensitize researchers and practitioners to these particular kinds of narrative and facilitate more productive engagement in future.
Conclusion
The patients presented here exist outside the parameters of mainstream biomedicine. This does not mean they should be ignored, abandoned or dismissed as ‘difficult’ as the difficulties lie elsewhere – beyond CF and its treatment. Focusing on how to make them less difficult and more compliant is equally unlikely to help. Rather, their refusal to actively self-care must be understood in the wider context of their experience as outsiders. To achieve this understanding it is necessary for professionals to learn to listen to stories they are not accustomed to hearing and the framework suggested here may go some way to facilitating this. In Controlled Narratives, for example, it became apparent that care is not simply passive but a ‘shared project’ (Reid and Clark, 2002) undertaken by siblings, friends and parents who simultaneously provide legitimacy to these narratives and challenge professionalism. This raises questions about the notion of autonomous ‘expert patients’ (which currently dominates healthcare in the UK and elsewhere) but, in some instances at least, it may be wiser to focus on ‘expert carers’ as both an access point and basis for on-going dialogue. For very different reasons, ‘chaotic’ patients in this study also took little personal responsibility for their health, but instead depended on professional support during times of crisis. This, of course, has financial implications and in these times of austerity, patients can be made to feel like ‘a drain on resources’ (as Ian, in this study, put it). As their distinctive narratives made clear, it is certainly not their fault that they spiral from one crisis to another without respite or reflection on their need to self-care.
The difficulties described here cannot always be easily fixed but this does not mean that nothing can be done. Proactively including these ‘hard to reach’ patients in this research, for example, has shown that dialogue is possible – however opportunistically and imperfectly this was achieved. Similarly, actively reaching out to them outside the hospital context (which is after all the source of so many of their complaints and grievances) could help build trust and transform relationships. As this is the traditional domain of social workers, the unique skills and expertise they offer could play a central role in outreach (Mishra et al., 2011). Something as simple as an impromptu visit or a random telephone call (preferably not about CF) may, for example, go some way to acknowledging them as valued persons rather than problem patients. This can be difficult, particularly when engaging with marginalized groups, but perhaps the difficulty is with the professional and not the patient.
Footnotes
Funding
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.