A meta-ethnography of patients' experience of chronic non-malignant musculoskeletal pain

Article history

The research reported in this issue of the journal was funded by the HS&DR programme or one of its proceeding programmes as project number 09/2001/09. The contractual start date was in October 2010. The final report began editorial review in November 2012 and was accepted for publication in February 2013. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.

Copyright statement

© Queen’s Printer and Controller of HMSO 2013. This work was produced by Toye et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

1. Getting started

This stage of the research involves ‘finding something that is worthy of the synthesis effort’ (p. 27). 20 The decision to develop a conceptual synthesis of patients’ experience of chronic non-malignant MSK pain was an iterative process that was sparked at the British Pain Society Annual General Meeting in 2009 when two of the research team (FT and KS) first met. From here we approached other members of the team with a specific interest and expertise in chronic pain, qualitative research and research synthesis (Box 1). We began with informal meetings and telephone discussions, which culminated in a successful application to fund the project. The study protocol is provided in Appendix 1.

The development of this meta-ethnography was both iterative and collaborative. Team members felt free to agree, disagree or change their mind within the safety of the group. The aim of considering alternative views within a team is not necessarily to agree on an interpretation but rather to enter into a dialectic process whereby our ideas are challenged and modified. This can lead to greater conceptual insight by challenging the boundaries of our own interpretations, just as a single word from another person can jog our memory or spark off insight when we had not expected it.

Throughout the project the project team met monthly either face-to-face or in Skype™ meetings (Skype Ltd Rives de Clausen, Luxembourg). We also met regularly with an advisory group that included two patient representatives and three NHS clinicians with experience in pain management (Box 2). The terms of reference for the advisory group are shown in Box 3.

2. Deciding what is relevant

This stage involved systematically searching for, screening and appraising potential studies to decide which to include in the synthesis. Qualitative syntheses do not aim to summarise the entire body of available knowledge, or make statistical inference from it. Qualitative syntheses are concerned with conceptual insight. Noblit and Hare20 strongly suggest that it is not necessary to include all published reports in a meta-ethnography: ‘Unless there is some substantive reason for an exhaustive search, generalizing from all studies of a particular setting yields trite conclusions’ (p. 28).

Campbell and colleagues28 also suggest that ‘omission of some papers is unlikely to have a dramatic effect on the results’ of qualitative synthesis (p. 35). However, for several reasons we decided to undertake a systematic search of published qualitative studies reporting patients’ experience of chronic MSK pain. Importantly, this project provided funding and the unique opportunity to identify the qualitative studies published in this area, and identify any gaps in knowledge. We wanted to produce a conceptual analysis with a weight of evidence that would have resonance with the health research community who were more used to quantitative systematic reviews. Finally, whereas previous meta-ethnographies in health care have included small numbers of studies,28 we knew that a systematic search in our chosen area would allow us to apply the methods of meta-ethnography to a large number of studies. Although Campbell and colleagues28 suggest that trying to include too many studies in a qualitative synthesis is unwieldy, we wanted the opportunity to see whether meta-ethnography could be useful in synthesising a large body of qualitative knowledge. With the ever-expanding body of qualitative research, qualitative syntheses are increasingly likely to identify large numbers of studies.

3. Reading the studies

This stage of meta-ethnography involves thoroughly reading and rereading the studies to identify and describe the concepts. This requires ‘extensive attention to the details in the accounts’ (p. 28). 20 Thorough reading continues throughout all phases of meta-ethnography rather than being a discrete phase.

After the first reading, FT uploaded a PDF version of each complete study into NVivo 9 software (QSR International, Southport, UK) for analysing qualitative data. This allowed her to reread the primary research findings throughout all stages of analysis and compare the original interpretations to developing ideas. NVivo 9 allowed FT to collect, organise and analyse a large body of knowledge by ‘coding’ findings from the results and discussion sections of papers under ‘nodes’. Findings can be coded under several nodes simultaneously and the overlap between coding can be easily observed. This is particularly useful for team analysis as it allows the researcher to easily make a record of how each team member has coded data, whilst continuing to return to the original articles. NVivo 9 also allows researchers to write memos and link these memos to specific data to keep track of developing ideas and theories. FT classified each study on NVivo 9 so that the team could identify the following study characteristics: author, journal, year of publication, type of pain, number and age of participants, source and country of participants (e.g. pain clinic in UK), method of data collection (e.g. interviews) and methodological approach (e.g. grounded theory).

4. Determining how studies are related to each other

The purpose of careful reading in meta-ethnography is to identify and describe the ‘metaphors’ or concepts in studies and ‘translate’ or compare them with those in other studies. This is fundamental to meta-ethnography because concepts are the raw data of the synthesis. This stage involves creating ‘a list of key metaphors, phrases, ideas and/or concepts’ (p. 28). 20 However, although meta-ethnography requires clearly articulated concepts, it can sometimes be difficult to decipher these concepts through the description, in other words to see ‘the wood through the trees’. For example, the reader may find him- or herself attempting to recode findings or to condense them into higher conceptual categories to make sense of them. One of the aims of qualitative analysis is to develop conceptual categories that help us to understand an experience, rather than just describe that experience. 63 We describe a concept as a meaningful idea that develops by comparing particular instances. Fundamentally, concepts must explain not just describe the data.

However, as the act of description itself requires a level of interpretation, it can be difficult to decipher a concept; it may be more useful to understand ‘description’ and ‘concept’ as two poles on a spectrum. Campbell and colleagues28 recognise this difficulty: ‘It became apparent that the distinction between findings and concepts was neither simple to make nor useful, and because it was felt to be unnecessary it was abandoned’ (p. 55).

Sandelowski and Barroso27 also recognise the complexity of synthesising qualitative findings when levels of interpretation can range from thematic surveys, which make some effort to ‘move beyond a list’, to ‘fully integrated explanations’ of social phenomena (p. 145). Schütz’s64 concept of first- and second-order constructs is frequently used in meta-ethnography studies to distinguish the data of meta-ethnography. 28 Schütz makes a distinction between (1) first-order constructs (the participants’ ‘common sense’ interpretations in their own words) and (2) second-order constructs (the researchers’ interpretations based on first-order constructs). The ‘data’ of meta-ethnography are second-order constructs. In meta-ethnography, these second-order constructs are then further abstracted to develop third-order constructs (the researchers’ interpretations of the original authors’ interpretations). However, the distinction between first- and second-order constructs is somewhat ‘unclear’. 60 Importantly, although first-order constructs are often presented in meta-ethnographies to represent the patients’ ‘common sense’ interpretations in their own words, it is important to remember that these words are chosen by the researchers to illustrate their second-order interpretations. Our approach deviates from that of other meta-ethnographies in that we chose to base our synthesis entirely on second-order constructs. Specifically, we made the decision to only include concepts that we felt were clearly articulated. We did not attempt to ‘reorganise’ findings, but excluded data from analysis if we could not decipher a concept. We made this decision because of the methodological issues surrounding the reorganisation of data from qualitative research. The second-order interpretation is based on a body of knowledge accessed through fieldwork. Therefore, attempts to reorganise findings without access to the wider body of knowledge might not illuminate the conceptual interpretation originally intended. In other words, we could argue that attempts at reorganisation are not grounded in the body of knowledge. We therefore made the decision to define the second-order constructs and not to include findings for which we could not decipher a concept.

5. Translating studies into each other

The next stage in meta-ethnography involves exploring how the second-order constructs are related to each other, thus translating studies into each other. 20 This is achieved through the constant comparative method of grounded theory. 67 By constantly comparing constructs we begin to see similarities and differences between them and organise them into further abstracted conceptual categories with shared meanings. In other meta-ethnographies, for example those of Campbell and colleagues,28 researchers have used an index paper as a way of orienting the synthesis. 68 In these examples, concepts from an early or ‘index’ paper are compared with concepts from subsequent studies. However, there are methodological issues with using an index paper to begin analysis. One could argue that using an index paper is comparable to being constrained by a priori concepts. There is also the problem of how to decide which paper to use as an index paper. The chosen index paper can potentially have a dramatic effect on the resulting interpretation. How do we define a ‘classic’ paper? There is no consensus about what makes a study ‘good’,28,57 and suggested criteria for appraising quality vary considerably. 69 We also need to consider that we will not necessarily find the conceptually rich papers first. Qualitative analysis does not start when the full body of data is collected but continues alongside data collection; the process of searching and analysing is iterative. The decision to use an index paper may rest on the number of studies to be synthesised. We knew that this meta-ethnography would include a large number of studies and comparing concepts across studies from an index paper in this way was likely to be unwieldy.

All team members were given the full list of second-order constructs and asked to organise them, through constant comparison, into categories or ‘piles’ that shared meaning. Each team member wrote a description for each category or ‘pile’. This process of categorisation using constant comparison is integral to qualitative research. The team met to discuss their categories and definitions. We did not aim to reach consensus, but to collaboratively develop our interpretations over time. At team meetings members broke into separate groups and then regrouped to discuss findings. Conceptual categories were written up on a whiteboard and discussed. Although team members gave different labels to their categories, it became clear through discussion that there was an encouraging overlap in the definitions of categories. Table 1 gives the team categories for the MSK second-order constructs and illustrates the overlap in team categories. For example, the concept that later developed as ‘struggling to affirm self’ was labelled as ‘self and body’, ‘body in pain’, ‘body is alien’, ‘pain as alien’, ‘altered body’ and ‘body self’. If we found that second-order constructs did not ‘fit’ our developing conceptual categories, we went back to the original studies to challenge our interpretations and discussed the constructs within the group. We also went back to the original studies after the final model was developed to check for fit. If we still felt that a construct did not ‘fit’, we did not include it in the analysis.

We kept the second-order constructs for fibromyalgia, chronic back pain (CBP) and all other MSK studies separate from each other so that we could explore any differences in conceptual categories between these groups. The process of categorising second-order constructs was repeated for MSK, fibromyalgia and CBP. After several team meetings we agreed to amalgamate MSK and CBP studies as the categories overlapped considerably. However, we decided to keep the fibromyalgia studies separate in the analysis as there were some differences in categorisation. Figure 5 shows how we compared and contrasted categories for MSK and CBP using a whiteboard. The same process was repeated for MSK and fibromyalgia.

FIGURE 5.

Comparing the conceptual categories from CBP and MSK studies during team meetings using a whiteboard. This shows how the team compared categories that were developed from MSK and CBP second-order constructs. MSK categories are shown on the left and CBP categories are shown on the right. Connecting lines show links between categories.

6. Synthesising translations

The next stage of meta-ethnography is to synthesise or make sense of the process of translation. Noblit and Hare20 suggest three genres of synthesis for meta-ethnography: (1) refutational (in which findings contradict each other), (2) reciprocal (in which findings are directly comparable) and (3) findings are taken together and interpreted as a line of argument. This third type of synthesis involves ‘making a whole into something more than the parts alone imply’ (p. 28). We intended to develop a line of argument synthesis. This is achieved by constantly comparing concepts and suggesting an interpretive order. In the words of Noblit and Hare:20 ‘We first translate the studies into one another. Then we develop a grounded theory that puts the similarities and differences between studies into interpretive order’ (p. 64).

Drawing on team discussions, and using NVivo 9 to continually compare concepts, categories and team memos, we developed a structure of categories that ‘made sense’ of the developing team analysis. Each team member then considered whether or not the structure reflected the discussions that had taken place. If a team member did not think that a particular second-order construct fit, we discussed this in meetings and made any necessary changes. Figure 7 shows how the final list of categories was developed using NVivo 9.

FIGURE 7.

Team coding structure for MSK using NVivo 9. Published with permission from QSR International. This illustrates the final structure of categories for the MSK second-order constructs on NVivo 9.

We found it useful to construct a diagram to develop and refine our line of argument. This diagram was developed collaboratively over time and was the focus for team discussions during this phase. Figure 8 illustrates the development of this model in team meetings using a whiteboard. Several amended versions of this diagram were created until we arrived at a model that reflected our final interpretation.

FIGURE 8.

Developing a line of argument using a whiteboard.

7. Expressing the synthesis

This phase concerns the dissemination of the research findings to maximise their impact.

Deciding what is relevant

Determining how studies are related

A glossary of all of the collaborative interpretations of each second-order construct is given in Appendix 3. These represent the raw data of our meta-ethnography.

Table 9 shows findings that were not included in the meta-ethnography because the team agreed that they were ‘untranslatable’. In other words, we felt that there was no central idea that pulled together the original findings. We did not attempt to reorganise these findings to include them in our analysis.

Translating studies into each other: developing the conceptual categories

This section describes the team’s final conceptual categories, illustrated by examples of second-order constructs. We have chosen particular second-order constructs to illustrate our conceptual categories in the same way that primary qualitative research studies use narratives as exemplars of concepts or themes. The second-order constructs supporting each conceptual category are presented in Appendix 4. These tables show the team memos describing each category. Table 10 shows an example of the team memos and second-order constructs supporting one conceptual category (‘alienated vs. integrated body’).

Fundamental to the patients’ experience of chronic MSK pain is a constant struggle: (1) struggle to affirm myself; (2) struggle to reconstruct myself in time; (3) struggle to construct an explanation for suffering; (4) struggle to negotiate the health-care system; and (5) struggle to prove legitimacy. The over-riding theme of these categories is adversarial, giving a sense of being guilty until proven innocent. However, in spite of this constant struggle there is also a sense of (6) moving forward alongside my pain. We discuss differences in category descriptions for fibromyalgia and MSK studies throughout the following sections.

Synthesising translations: line of argument

Our findings revealed the new concept of an adversarial struggle that explained what chronic MSK pain was like. The following describes our line of argument or conceptual model, which explains the categories described above.

Integrating my body

Our model suggests that dualistic therapeutic approaches do not encourage a person to move forward, and that a more embodied approach to illness might help. A theory of embodiment has its philosophical roots in the writings of Merleau-Ponty,394 who breaks down the dualism of mind and body to focus on the central place of the body in constructing our experience of the world. Embodiment theory emphasises bodily experience and the way in which we construct this experience. 388,395–398 This embodied approach in no way denies the existence of disease, but shifts the ‘level of analysis’397 to the individual’s understanding of the experience. Thus, Frank’s397 ‘medicalised body’ and Kleinmnan’s conceptualisation of the biomedical model as a culturally specific ‘explanatory model’ demonstrate that, although we are bodies, the conditions through which we experience our bodies are constrained by culture. Our model supports the suggestion that, because chronic illness is constructed in a certain way, it is experienced as ‘failure’:

The dilemma of the ill . . . is that they are constructed as responsible for their health and thus feel guilty, and simultaneously understand themselves as having less and less control over their bodies . . . while patients feel responsible, professional medicine places the cause of their disease beyond their control.

p. 138397

Our model also suggests that the way in which we experience our own body has an impact on the way that we construct disease. As part of a person’s struggle we described the fragmentation of body and self, and suggested that moving forward with pain involves a process of reintegrating the painful body. In his classic work, The Absent Body, Leder388 explores reasons for this fragmentation, which he argues explain the prevalence of Cartesian dualism (see http://plato.stanford.edu/entries/dualism/#MinBod; accessed 2 July 2013) in the development of Western scientific thought and modern medicine. Cartesian dualism conceptualises mind and body as separate entities. Leder388 argues that, before the onset of pain, our bodies are ‘essentially characterised by absence’ (p. 73). Under conditions of health, we perform actions automatically and remain unaware of our body until something goes wrong with it. Health presupposes that we remain unaware of our bodies. 396 When in pain, the body emerges as an ‘alien presence’; it ‘dys-appears’. I no longer am a body but have a body,388 and my body becomes an ‘it’ as opposed to an ‘I’. Wall399 describes this dualism as epitomised by the expression ‘my foot hurts me’ as if in some way the foot is apart from myself (p. 23). It is because ‘the body seizes our awareness particularly at times of disturbance, [that] it can come to appear “other” and opposed to the self’ (p. 70). 388 This fragmentation of ‘mind trapped inside an alien body’ means that our bodies become mistrusted and ‘forgotten as a ground of knowledge’ (p. 86). 388 Our concept ‘integrating my painful body’ implies an altered therapeutic relationship with the body in which the dualism of mind and body are broken down.

Our model opens up possibilities for therapies that aim to change the way that we experience our own body when we are in pain. For example, mindfulness-based therapies encourage those with pain to learn a ‘particular kind of attention characterized by a non-judgmental awareness, openness, curiosity, and acceptance of . . . experiences’ such as pain (p. 83). 400 Qualitative research focusing on the way that we experience our own body when it goes wrong, a phenomenology of the body, would be useful to help understand the efficacy of therapeutic approaches such as mindfulness. This research would help us to understand the impact of these approaches on recovery from illness.

Accepting pain and redefining my self

Our model shows how threats to self-identity are fundamental to the experience of chronic pain401 and suggests that moving forward with pain involves redefining self. Patients struggle to reconcile the new self in pain with an old self-rooted in the past or a hoped-for-self in the future. This is supported by Campbell and colleagues’28 meta-ethnography of rheumatoid arthritis, which describes a loss of ‘life definition’ (p. 111). Our model links to developing psychological theories utilised in pain management. In particular, it supports studies showing that an individual’s capacity to redefine their self, their psychological flexibility, may help people move forward with pain and reduce its impact. 402,403 A new wave of acceptance and commitment therapies (ACTs) focusing on psychological flexibility is showing promise in the treatment of those with chronic pain. These therapies construct acceptance as moving towards goals that define self alongside a ‘willingness to continue to actively experience pain along with related thoughts and feeling’ (p. 145). 404 Although moving towards self-defining goals is integral to ACT, acceptance might mean different things to different patients (and their clinicians). For example, for some the term ‘acceptance’ might imply giving up404,405 and this may have an impact on their willingness to engage in ACT. Qualitative research exploring the meaning of acceptance for both patients and clinicians might help us to understand the efficacy of these approaches.

We do not know why certain patients can accept and redefine their sense of self and others cannot. It may be related to the degree of disruption to self that is caused by pain. The enmeshment model developed by Pincus and Morley406 proposes that, if a person regards their ideal self as unobtainable in the presence of pain, they are less likely to accept chronic pain. The enmeshment model incorporates self-discrepancy theory,407 which proposes that the extent to which pain disrupts our lives depends on the meaning that it holds for us. In self-discrepancy theory meaning incorporates three constructs: (1) actual self – ‘your representation of the attributes that someone (yourself or another) believes you actually possess’; (2) ideal self – ‘your representation of the attributes that someone (yourself or another) would like you, ideally, to possess’; and (3) ought self – ‘your representation of the attributes that someone (yourself or another) believes you should or ought to possess’ (p. 320–1). 407 Our ideal and ought selves act as guides that we strive to achieve. Discrepancies between these guides and our actual self can lead to powerful emotions such as shame, dejection, embarrassment or even fear. Ideally, these powerful emotions drive us to actions that will ultimately reduce the discrepancy. The enmeshment model extends self-discrepancy theory by suggesting that the degree to which certain goals are integral or ‘enmeshed’ with my self-concept will determine the degree of emotional consequences. 406 For example, if the desire to be independent or to interact with others is highly valued, this is likely to lead to greater distress if it is threatened. 401 Self-discrepancy theory incorporates the importance of what another person thinks about me. In other words, any discrepancy between what people think I am and what they hoped or expected can have a powerful effect on how I feel and behave. These psychological models are useful as they acknowledge that we cannot understand the impact of pain unless we try to understand personal meanings. Therapeutic approaches aimed at helping a person to move forward with pain need to focus on facilitating redefinition of valued self.

Redefining self in space and time

Our model shows how a person’s construct of self now and in the future is altered. We described how the unpredictability of pain creates an endless present in which the person in pain becomes constantly vigilant of the body. Thus, the person in pain becomes focused on the here and now. Leder388,408 describes this as the ‘centripetal mode’ in which a person focuses in towards the body rather than out towards the world and future. When we have pain we no longer engage in the world as we once did. Our usual sense of time and space is replaced by constant bodily vigilance; ‘the oppressive nearness of coenaesthesia’ (p. 75). 388 ‘Our sensory experience, normally directed ecstatically upon the world, is now forced inward in a centripetal fashion. We no longer see hear, feel the world through our bodies: instead the body itself becomes what we feel’ (p. 255). 408

Our model supports approaches that empower a person to live outwards towards the world, rather than in towards the body. In other words, therapeutic approaches that empower participation, defined as ‘involvement in life situations’ (p. 10). 409 This means trying to live as a reciprocating person with meaningful social roles, setting goals and making plans for the future. For example, pain management may aim to empower a person to remain in or return to work, or to continue to move towards family or educational goals. Our model illustrates the impact that not feeling that anyone believes you has on participation. The International Classification of Functioning, Disability and Health410 regard ‘stigma’, ‘stereotypes’, ‘people’s reactions’ and ‘prejudice’ as key factors limiting participation, factors that go beyond the activity limitations resulting from physical impairment. Our model shows that a sense of not feeling believed causes social isolation and limits participation. As participation is integral to a return to health, research is needed on the factors, beyond physical impairment, that limit participation for those with chronic pain. This opens up possibilities for therapies that aim to empower participation.

We described how a person’s construction of time is altered. Leder’s388 centripetal mode incorporates this altered relationship with time; ‘pain seizes [us] back to the present’ and we are no longer at ease to ‘roam the future’ (p. 75). Although our model supports this pull towards the moment now, we also found that people in pain simultaneously looked towards the future with a sense of misgiving. Before pain our construct of self-in-the-future remains dynamic; none of us is likely to turn out precisely as we plan. However, in conditions of health, we do not remain focused on this discrepancy. In contrast, for those with chronic pain, the discrepancy between what we had planned and what is now felt to be likely is brought starkly to the foreground. The life that we, or others, planned is irreparably altered. The future ‘dys-appears’ giving a sense of hopelessness. This altered regard towards the future has an impact on a person’s self-perception. Patients and their clinicians therefore face the challenge of reconciling a sense of hope with the realisation that pain is here to stay. Research focusing on how a person can reconcile hope with an acceptance that pain is here to stay would help us to understand outcomes for people with chronic MSK pain.

Patient as subject not object

We describe relationships with health-care professionals that do not necessarily empower patients to move forward. We show that patients with chronic MSK pain do not feel heard, believed or understood as living subjects. This clinical relationship focusing on the patient as an object is historically and culturally embedded: ‘The post-Cartesian world has very successfully out-descarted Descartes. It has perfected a pain so stripped down that it has almost no meaning’ (p. 274). 411

Foucault412 described the paradoxical position of the clinical encounter, in which the doctor aims to diagnose a disease rather than understand the person’s experience: ‘If one wishes to know the illness from which he is suffering, one must subtract the individual, with his [or her] particular qualities’ (p. 15).

However, it is ‘pathos’, the feeling of suffering and powerlessness, of ‘life going wrong’, that precedes a person’s visit to the doctor (p. 137). 396 Our model suggests that central to the therapeutic relationship is the recognition of ‘pathos’; the patient is a subject rather than an ‘object’ of investigation. This concept is central to models of patient-centred care. 413 Leder388 argues that, when treated as the object, the person becomes conscious of themselves as an alien thing, thus reinforcing dualist metaphysics. Our model supports a therapeutic relationship that challenges the dualism of mind and body, and meets the patient as an embodied individual: ‘When the patient is not treated as a living, desiring, suffering being, compliance is reduced, evidence is overlooked, inappropriate treatments are prescribed, genuine healing gives way to “fixing the machine” ’ (p. 97). 388

We described a need for a person in pain to feel that the health-care professional is alongside them with their pain. Affirming a person’s experience and allowing an empathetic interpretation of their story is not an adjunct, but integral to health care. 395 This is far away from the clinical encounter described by Foucault,412 in which patients’ meanings are stripped away by the health professional in their well-intentioned efforts to diagnose a disease. People construct the meaning of illness through their stories, and it is only by listening to these stories that we understand their response to illness. For example, narratives can tell us about discrepancies between a person’s actual, ideal and ought selves: what am I like compared with what I used to be and what I wanted to be? Narratives also reveal underlying tensions. Bury393 describes moral narratives in which people make efforts so show themselves as worthy human beings, which our model supports. These narratives are particularly important when there is no explanation for their suffering, and a person feels alienated from the biomedical model. 123,393,389 Illness narratives emphasise the cultural context of illness and how it impacts on suffering. This therapeutic need to be heard and valued may have implications for education, for example the use of arts and humanities in clinical education to help health professionals develop skills of empathy and compassion. 414

Towards a culturally embodied model of pain

Our model supports anthropological studies that have shown that suffering gives rise to a search for an explanation. 415 An explanation allows us to do something to relieve our suffering, to take reparatory action. The way that we explain illness is embedded in our culture and we learn this from those around us. Our findings show that cultural models used to explain illness are integral to personal meanings, and therefore the experience of illness. The medical model is an example of a culturally specific model for explaining suffering. 395 However, this model has certain characteristics that are fundamentally antagonistic to the experience of those with chronic MSK pain: the dualism of mind and body; specific aetiology and curability of disease. 415–417 The biomedical model does not fit the experience of those with chronic MSK pain yet still remains highly valued and integral to credibility, even though we know that biological findings do not fully explain pain. Biomedical approaches based on a dualism of body and mind are ‘ill-equipped to resolve the problem of pain’ (p. 41). 418 Many health-care professionals may not feel that they adhere to a biomedical model, and may indeed be surprised by the finding that is it highly valued. However, cultural expectations of diagnosis and cure still have a powerful effect on the experience of pain: ‘society itself is changed by its belief in medicine and surgery’ (p. 162). 399 The Cartesian dualism of mind and body integral to the development of Western scientific thinking (erroneously) presupposes that, if something cannot be found in my body, it must be in my mind. We describe how people struggle to achieve a diagnosis and ‘pass the medical test’ so that people will believe them. Importantly, although qualitative studies have consistently shown that people with chronic pain feel that health-care professionals (and others) do not believe them, this disbelief is still deeply felt. This finding has implications for health-care practice.

Taking an anthropological perspective, Csordas419 proposes that healing is a cultural process that involves altering the meaning of suffering in order to generate possibilities for the future. Croft and colleagues3 suggest that a change in model would improve the outcome for patients with MSK pain, in particular moving away from the focus on pathology and towards the experience of symptoms. In other words, treat symptoms rather than defined pathological conditions. This requires a shift away from the prevailing explanatory model. It can be extremely difficult to challenge cultural models as they are inherently stable and have a logic grounded in culture. 123 We have described how patients feel compelled, yet at the same time reticent, to engage in a health-care system that is failing their needs. There is a sense of being ‘trapped in the system’. This compulsion may be fuelled by the value placed on a cultural model in which diagnosis, treatment and cure are culturally expected norms. The compulsion is further fuelled by a person’s need to legitimise pain. However, although difficult to challenge, static cultural models do shift if they continue to be challenged by lived experience. 420 Our analysis shows that cultural models can hide deep underlying tensions. 391 The biopsychosocial model is an alternative cultural model that has been successfully used for some years in therapeutic approaches for chronic pain. It aims to focus on the ‘human experience’ of illness and suggests that illness experience is the result of a complex relationship between biological factors and psychosocial factors. 390 Although the biopsychosocial model goes a long way towards incorporating experience into our understanding of pain, it faces criticisms in that it is still ‘dualistic’ at its core. For example, Grace418 argues that psychological factors tend to be ‘grafted onto the somatic’ (p. 44). Our interpretation supports a truly ‘integrative’ model’ that treats pain as an embodied experience. 418,421,422 Embodiment focuses on meaning, which can be understood only in the context of the individual’s social, cultural and historical context. Meaning is vital to an individual’s emotional response and actions; it is ‘never external to pain, never something “added on” ‘ (p. 48). 418 This fits with the International Association for the Study of Pain definition of pain as a sensory and emotional experience: ‘Pain is always accompanied by emotion and meaning so that each pain is unique to the individual’ (p. 38). 399

Culture gives meaning to experience by providing a system for ordering and categorising experience. 415 In her classic texts, Susan Sontag uses the examples of cancer and tuberculosis423 and later acquired immunodeficiency syndrome424 to show how cultural meanings are attributed to illness, even if illness has a specific pathology. In short, imaginative or ‘metaphoric thinking’ regarding illness is integral to the experience of suffering. Discrepancies between cultural categories and our experience can result in powerful emotions that cannot be understood outside the cultural context. For example, the mismatch between the experience of chronic pain and the biomedical model can produce feelings of worthlessness, fear, agitation, shame and guilt. Explanations that focus on culturally embedded meaning might provide a useful link between culture and physiology. 418,421,422

The performative aspects of pain experience

Our model also suggests that performance is integral to the experience of chronic MSK pain. The struggle to successfully perform pain has important implications for chronic pain management. First, we describe the person’s struggle to balance whether or not to show or hide their pain; to appear well or ill. In this way their experience of pain is scripted to present a particular impression. This should not in any way imply that pain is not real; Goffman425 suggests that performance is integral to social life. Through performance we make things happen by presenting a certain picture of ourselves.

When an individual appears in the presence of others, there will usually be some reason for them to mobilise their activity so that it will convey an impression to others which it is in their interests to convey (p. 3). 425 Our model also resonates with Turner’s391 influential anthropological work on performing cultures. Like Goffman,425 he supports a theatrical paradigm for culture. 426 Turner’s work is important because he observes the dynamic and dramatic process maintaining cultural life. He describes how cultural norms are not static but continually re-enacted through a performative process whereby (1) cultural rules are breached, (2) there is a period of crisis when the person remains outside or ‘liminal’ to culture, (3) redressive action is taken and (4) there is a resolution of crisis through reintegration or schism with culture. This resonates with facets of our model: I don’t fit the medical model (breach); nobody believes me (crisis); I am struggling to prove legitimacy, to negotiate the health-care system and to construct an explanation for my suffering (redressive action). However, our model demonstrates that, for many people with chronic MSK pain, there is no resolution and they remain culturally liminal. From the Greek word limen, meaning harbour, liminality refers to a person or thing that is neither wholly one thing nor the other; a person who resides in-between categories. Some argue that a person with unexplained symptoms may be stigmatised because they are culturally liminal. 123,427 We also show how a person with MSK pain uses moral narrative to perform their credibility by presenting a certain ‘virtuous’ picture of themselves. 393,428 These moral narratives may be particularly important when medical explanations are absent and a person finds themselves standing outside culture. 393

Qualitative syntheses in musculoskeletal pain

There is already an insightful qualitative synthesis exploring the experience of rheumatoid arthritis. 28 Campbell and colleagues’28 meta-ethnography of rheumatoid arthritis supports important areas of our conceptual analysis. For example, their model highlights the person’s need to explain elusive symptoms; the unpredictability and unrelenting nature of rheumatoid arthritis; the loss of ‘life definition’ and disruption to self; a dread of the future; and the loss of reciprocal roles and social isolation. Unlike Campbell and colleagues, we identified concepts that describe patients’ experience of health care, although these were less evident in the fibromyalgia studies. This may highlight the relative importance and impact of patients’ experience of health care, particularly for people with MSK pain for whom a diagnosis is often absent. In short, the experience of health care is integral to a person’s experience of pain, and was more prevalent in the second-order constructs from primary studies than the experience of pain itself. We did not identify a qualitative synthesis that explored the experience of osteoarthritis and this might be a useful future synthesis.

There is a previous qualitative synthesis of fibromyalgia studies429 and, as the condition incorporates symptoms other than MSK pain, we discussed with the advisory group whether or not to include fibromyalgia studies in our meta-ethnography. We decided to include fibromyalgia on the basis that chronic MSK pain was central to the experience, and that the studies were therefore likely to be insightful. We also wanted to be able to compare fibromyalgia and MSK concepts arising from our analysis. Our synthesis includes 19 of the 28 papers incorporated in Sim and Madden’s429 fibromyalgia synthesis. We did not include papers that did not meet our criteria for inclusion, and included an additional nine fibromyalgia studies. 324,327,335,351,352,366,373,377,381 Their synthesis supports important areas of our conceptual analysis, for example the ‘conscious awareness’ of the body in pain; the unrelenting nature of fibromyalgia; isolation and loneliness; the search for an diagnosis; the ambiguity of diagnosis and loss of legitimacy. It also supports concepts related to moving forward with pain, including listening to the body, accepting loses and re-evaluating life. This overlap in themes is encouraging and supports the integrity and usefulness of qualitative syntheses in health research.

In another systematic review of qualitative studies, Parsons and colleagues430 explored the influence of patients’ and primary care practitioners’ beliefs and expectations about chronic MSK pain on the process of care. Their finding that clear communication and trust is integral resonates with our model. Their review also supports the finding that the biomedical model does not fit the experience of those with chronic MSK. In particular, although they suggest that the causation of pain was grounded in the biomedical model by practitioners and in personal experience by patients, there was conflict in both patients and practitioners about the balance of these two causal explanations.

Methodological issues

We have discussed our conceptual model and some of the health-care and research implications. The following section explores methodological issues specific to meta-ethnography. Campbell and colleagues28 acknowledge that there are different ways of carrying out meta-ethnography and that it is not useful to be rigid in one’s approach. There are both epistemological and practical challenges involved when synthesising qualitative research. A useful description of some of these challenges is given in a HTA report by Murphy and colleagues. 69 We will focus on challenges specific to meta-ethnography.

Limitations

The findings of qualitative research will inevitably be only one possible interpretation of the data. As qualitative analysis is iterative, it can be difficult to present exactly how you have reached your conclusions, or where your conclusions specifically come from. Researchers will always bring existing ideas and points of view into the analysis. We made great efforts to work collaboratively to challenge our individual interpretations at each stage of the analysis. The strength of our team was that members felt free to agree, disagree or change their mind within the safety of the group. This facilitated a dialectic process in which our ideas were challenged and modified. To illustrate the stages of this process we have included a full glossary of second-order concepts along with tables showing which of these concepts supported our categories (see Appendices 3 and 4). It is also important to consider that the strength of qualitative research is its focus on interpretation. Meta-ethnography is an interpretive form of knowledge synthesis that aims to develop new conceptual understandings. This process is iterative and utilises an ongoing form of knowledge production (thesis–antithesis–synthesis). Therefore, bringing ideas into a study is not necessarily a limitation, as long as these a priori ideas are challenged. In this way, Blumer439 distinguishes between definitive concepts, which precisely define the object of enquiry, and sensitising concepts, which give ‘a general sense of reference and guidance in approaching empirical instances’ (p. 7). Although we propose a model that ‘explains’ the conceptual categories, this model is our interpretation based on a rigorous process carried out over 2 years. We do not claim that this is the only way that these concepts could be explained and invite readers to consider their own interpretations in the light of ours, with the ultimate aim of improving patient care.

Clinical application

Our line of argument supports a model of health care in which the health-care professional sits alongside the person in pain. Affirming a person’s experience and allowing an empathetic interpretation of their story is not an adjunct, but integral to health care. In this way our model supports an embodied, non-dualistic approach that may be transferable to other chronic conditions.

Our model also suggests possibilities that might help patients to move forward alongside their pain:

• an integrated relationship with the painful body

• redefining a positive sense of self now and in the future

• communicating to, rather than hiding from, others the experience of pain

• knowing that I am not the only one with pain (but I am still valued)

• regaining a sense of reciprocity and social participation

• recognising the limitations of the medical model

• being empowered to experiment and change the way that I do things without the sanction of the health-care professional.

Contributions of authors

Francine Toye (Researcher, Qualitative Research) contributed to the conceptual design, interpretation and analysis, wrote the first draft of the final report, made important intellectual contributions to the study and approved the final draft.

Kate Seers (Professor, Health Research) contributed to the conceptual design, interpretation and analysis, made important intellectual contributions to the study and approved the final draft.

Nick Allcock (Associate Professor, Nursing) contributed to the interpretation and analysis, made important intellectual contributions to the study and approved the final draft.

Michelle Briggs (Professor, Nursing) contributed to the interpretation and analysis, made important intellectual contributions to the study and approved the final draft.

Eloise Carr (Professor, Nursing) contributed to the interpretation and analysis, made important intellectual contributions to the study and approved the final draft.

JoyAnn Andrews (Researcher, Qualitative Research) contributed to the interpretation and analysis, made important intellectual contributions to the study and approved the final draft.

Karen Barker (Clinical Director, Musculoskeletal Services, and Senior Research Fellow) contributed to the interpretation and analysis, made important intellectual contributions to the study and approved the final draft.

Disclaimers

This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health.

A META-ETHNOGRAPHY OF PATIENTS’ EXPERIENCE OF CHRONIC NON-MALIGNANT PAIN – REVISED FOLLOWING RECOMMENDATIONS BY BOARD

Aims and objectives

The aim of this study is to:

• Increase our understanding of patients’ experiences of chronic non-malignant pain and therefore have an impact on quality of care.

• Utilise existing research knowledge to improve understanding and thus best practice in patient care.

• Contribute to the development of methods for qualitative research synthesis.

These aims meet the HSR programme objectives.

Objectives

1. To produce a conceptual synthesis of qualitative findings related to chronic non-malignant pain using the methods of meta-ethnography proposed by Noblit and Hare,20 and developed for use in health research. 22,23,61

2. To contribute to the development of methods for qualitative research synthesis and produce a qualitative synthesis that is rigorous, accessible and relevant to academics, practitioners, patients and policy makers.

This research will increase understanding and knowledge of chronic non-malignant pain, and thus directly inform best clinical practice by providing new understandings regarding patient experience and their treatment. We will contribute to a more patient focused research agenda. A qualitative synthesis would enable policy makers to determine whether or not the treatment for chronic non-malignant pain is meeting the needs of quality improvement as defined by the Department of Health’s report – ‘High quality care for all’440 where patient experience is seen as fundamental to quality of care. A greater understanding of patient experience of care has potential to provide new opportunities to deliver services differently and directly influence patient redesign of health services.

There are methodological issues that need to be addressed if qualitative synthesis is to be effectively used to enhance best practice:21,22 A systematic search of the qualitative literature is not straightforward. 22,51 There is a lack of consensus regarding the most appropriate way to judge what should be included in a qualitative synthesis. 56,57

Background

Chronic pain has been acknowledged as a condition in its own right,5 and has become the focus of recent government policy in the UK. 6,15,16 Each year over five million people develop chronic pain. 6 As many as 19% of adults in Europe suffer with moderate to severe chronic pain,7 and 7% have chronic pain that is severe and disabling. 11 Persistent pain may affect more than 50% of older persons living in the community. 441 Pain has a high impact on the individual’s physical, psychological and social wellbeing. 12 For example, 49% of patients with persistent pain experience depression, 25% lose their jobs and 16% feel their chronic pain is so bad that they sometimes want to die. 6 In terms of cost, musculoskeletal pain may account for 2% of the Gross Domestic Product of Europe. 442

Rationale – Qualitative research addresses a central concern of the NHS – patient experience. 440 Patient experience is one of the dimensions of quality integral to the NHS. In 2008, Darzi’s report ‘High Quality Care for All’ stated that the patient’s experience of the NHS is fundamental to the quality of care and is of central concern. ‘Quality of care means quality of caring’ which can only be improved by understanding patients experience. 440 Qualitative research aims to understand the experience of illness, and make sense of the complex processes involved. It aims to enrich human discourse and help to generate concepts that allow us to understand behaviour. 20 It can thus lead to substantial improvements in health care and policy decisions by enabling clinicians and policy makers to understand the appropriateness, and meaningfulness of interventions. In particular, by understanding the experience of those with chronic pain clinicians, policy makers and patients can be empowered to make more informed decisions about care. Insights from several meta-ethnographies in health care have contributed to a greater understanding of complex processes such as medicine taking,22 adherence to treatments for diabetes23 and use of antidepressants. 24 Excluding qualitative research from evidence based practice may mean that we neglect vital information from decisions related to policy and practice. 25 Syntheses of qualitative research should thus be used alongside those of quantitative research, to underpin policy decisions. Concepts generated from qualitative research synthesis will help researchers, policy makers, clinicians and patients to ask questions that will enhance the validity of subsequent research.

Qualitative findings can help to formulate relevant research questions, identify the components of interventions, understand the outcome of interventions and conflicting results, and to identify barriers to treatment. However, the proliferation of studies exploring the experience of chronic non-malignant pain97,140,206,214,250,261,296,327,342,343,348,363,379,385,427,433,443–460 makes it difficult for clinicians and policy makes to use this knowledge to inform practice and policy, and increases the danger that these findings are ‘doomed never to be visited’. 27 Research findings need to be accessible if they are to have an effect on care and policy. The Cochrane Qualitative Research Methods Group acknowledges the importance of including qualitative findings within evidence based healthcare, and stress that ‘evidence from qualitative studies can play an important role in adding value to systematic reviews for policy, practice and consumer decision-making’21 571. Syntheses of the existing body of qualitative research can also help to identify gaps in knowledge and to target these gaps. To date, there has been no synthesis of qualitative research related to chronic non-malignant pain, and thus the proposed research is timely. 25

A qualitative synthesis would aim to offer conceptual insights into health experience that could have a direct effect on care. For example, there may be a place for a conceptual theory regarding disability from chronic pain based on the concepts derived from qualitative synthesis. Such a theory could be used to inform the development of ‘risk’ tools for assessment of patients with chronic pain. We know that psychosocial factors seem to predict the outcome of treatment but we do not fully understand why some are disabled by their pain and others are not. 461,462 Some patients with chronic pain are able to accept their limitations and successfully revise their sense of self and others are not. 427,463 Although there has been some research exploring adaptation to pain,450 the role of acceptance has not been fully explored. 464

There is large body of qualitative research exploring patients’ experience of chronic pain, and although certain themes seem to be consistent, there has been no attempt to systematically search the qualitative literature with an aim to increase our conceptual understanding. Qualitative studies show that patients with persistent unexplained back pain remain committed to the medical model of pain even though this model does not fit their experience. 327,344,451 The medical model takes disease to be an objective biomedical category that can be accounted for by a specific etiology. This model also implies an illness trajectory whereby, following diagnosis and treatment, a person’s health is restored. 465 Studies also report that patients feel that they are not believed,97,250,427,443,447,448,452,460 and may even start to doubt their own experience of pain. 327,433,447,448,451,457 These findings are supported by a meta-synthesis of patient experiences of Fibromyalgia. 429 Patients with chronic pain also present a certain moral narrative393 in order to legitimize their condition,443,449,452,459 and use social comparison to rank themselves in relation to others. 342,443,450,453,458 Qualitative studies have also shown the importance of self-identity, yet at the same time, an acceptance of changes to identity. 427,454,460

The aim of qualitative synthesis is to systematically review and integrate the findings of qualitative research in order to increase conceptual understanding. The aim is to make ‘a whole into something more than the parts imply’ [48:28]. This synthesis would be accessible to health professionals, researchers, policy makers and patients, thus having a far-reaching impact on the processes of health care. Policy makers and clinicians need to draw on various sources of evidence in order to improve the quality of patient care. 31 Qualitative synthesis can thus add value to evidence on the effectiveness of interventions. 21 Synthesis of qualitative research aims to move beyond narrative description and generate ‘theories that can inform the development of interventions’,31 thus informing the implementation of more appropriate and effective patient focused interventions. 21,60

Need

This research meets the classifications of research need outlined by the NIHR Health Services Research Programme. In particular, a meta-ethnography aims to build on exiting work and generate new knowledge.

1. Building on existing work. One of the specific aims of this study is to utilise existing research knowledge to improve understanding and thus best practice. Specific to meta-ethnography is the aim of making a whole that is greater than the sum of its parts,20 in order to generate a new conceptual understanding based on the comparison of multiple accounts. A meta-ethnography of chronic non-malignant pain will therefore enhance and add value to the body of existing knowledge in the field of pain.

2. Capacity to generate new knowledge. A qualitative synthesis would offer a greater conceptual understanding of patients’ experiences and offer insights into effective care. This meta-ethnography would help us to identify gaps in the knowledge that are not addressed by existing research and therefore add to the validity of further research in this area. For example, we have said that certain patients are able to successfully revise their sense of self and others are not. 427,463 This study is likely to offer conceptual insights into this process. 464

3. Health need. Chronic pain has a huge impact on the quality of life of adults in the UK,6,7,11,12,441 and this is recognised in recent UK policy documents. 6,15,16 The research may be used to inform the development of quality of life tools to be used in chronic pain. This research may also contribute to the dialogue with patients about their chronic pain and how policy makers and clinicians can meet their needs. It could thus have a direct impact on quality of care as outlined in ‘High Quality Care for all’. 440

4. Expressed need. A greater conceptual understanding of chronic pain is highly relevant and has been highlighted as important in recent policy documents in the UK. The Chief Medical Officers report in 2009, ‘Pain breaking through the Barrier’6 identifies chronic pain as important to NHS policy. In addition to this, an NHS report on ‘getting to GRIPS with chronic pain in Scotland’15 identified a need to improve knowledge about chronic pain. Chronic non-malignant pain is also recognised as one of the key areas for improvement by the Welsh Assembly Government. 16 Specifically, the Chief Medical Officer recommended that training in chronic pain should be included in the curricula of all healthcare professionals. 6 This meta-ethnography may be used to inform education initiatives related to chronic pain.

5. Sustained interest and intent. Chronic pain has been highlighted as a future priority for NHS policy. 6 If patients with pain are managed more effectively this may reduce unnecessary interventions such as emergency department visits, hospital admissions, secondary and tertiary referrals and inappropriate diagnostic testing. Conceptual understanding may contribute to the development of care pathways for chronic non-malignant pain. Poor quality pain management in the elderly and in care home residents has been highlighted by the Patients Association. 181 This finding is of particular social importance in view of the ageing population in the UK and the potential effect on demand for pain services. Demand for the treatment of chronic pain is likely to increase with increasing age.

6. Organisational focus consistent with HSR mission. This study will inform the organisation of appropriate services for chronic pain. There is currently no synthesis of qualitative evidence available to understand patients’ views of the feasibility and acceptability of interventions for chronic pain. This is fundamental as qualitative research has been highlighted as important in informing health care policy and best practice. 21,56

7. Generalisable findings and prospects for change. Whilst qualitative research is contextual and therefore can be complex to apply to decision making processes, qualitative synthesis can be used to generate findings that can more clearly inform practice. We have given the example of how findings could be used to inform the development of ‘risk’ tools for assessment of patients with chronic pain. Similarly, we have suggested the findings could be used to inform the development of chronic pain care pathways within the NHS, thus having a direct effect on decision-making regarding treatment.

Method

A figure outlining the research process is shown below.

Flow chart of research process.

Contribution to collective research effort and research utilisation

Plan of investigation and timetable

A plan of the study with monthly schedule has been drawn up and is shown below.

Ethics

This meta-ethnography would not involve patient participants and does not require ethical approval.

Project management

There will be a clear project documentation system, with careful version control. This will be developed by the PI and agreed by the project team at their first meeting. It will include a detailed Gantt chart; roles and responsibilities of each project team member; a risk register; a brief communication strategy setting out principles for communication, updating and discussion within the project team; a dissemination strategy and reference management plan using Endnote. The PI will be responsible for the day-to-day running of the study, and the project team will meet monthly using a combination of face-to-face meetings, teleconferencing and Skype. Progress against agreed objectives and budget monitoring will be part of each meeting. A steering group will be established and meet three times during this study to offer advice to the project team.

Service users

Steering group membership

1. A member of the Nuffield Orthopaedic Centre, Patient Research Engagement Forum (PREF) who has recent experience of treatment for non-malignant pain.

2. A patient with an interest in research will be recruited from UNTRAP based at Warwick University (www2.warwick.ac.uk/fac/cross_fac/healthatwarwick/untrap/). UNTRAP is a partnership between users of health and social care services and carers, the University of Warwick and the NHS. UNTRAP aims to support the involvement of service users and carers in teaching and research.

3. Beverly Collett [past Pain Society President], Assistant Medical Director, Consultant in Pain Management & Anaesthesia, Leicester Royal Infirmary NHS Trust, who has been actively involved in policy decisions for chronic pain, has agreed to be part of the steering group.

4. Department of Health representative with an interest in patient and public involvement.

5. Two members of NHS staff working in chronic non-malignant pain.

The steering group will meet a minimum of 3 times spread throughout the study (see study timetable) and aims to provide advice from a broad perspective.

2. Involvement in Analysis – The UNTRAP user will also be active in the synthesis stage of the research (see study timetable). This person will attend 3 key analysis meeting and contribute to the conceptual development of this study. This person will paid at the agreed UNTRAP rate.

Expertise and justification of support required

The main costs for this proposal will be to support the research team. Full details of costing are given in the application form. We realise the likely number of papers will be challenging and so have constructed this team taking this into account. We will allocate each paper to two members of the research team in a rotational system, so that each researcher has the opportunity to work with every member of the team. This will allow a broader perspective on appraisal and interpretation of each paper. We know that meta-ethnography is feasible for studies incorporating smaller numbers of studies. 22,23,61 A meta-synthesis incorporating a large number of studies will contribute to the understanding of the feasibility of meta-ethnography for use in areas of healthcare where a large body of qualitative knowledge exists.

Building research capacity

This project will provide FT the opportunity to develop her post doctoral experience to undertake a large synthesis of qualitative research within an experienced team of qualitative researchers. With the proliferation of qualitative research findings, the ability to synthesise findings is likely to become an increasingly important facet informing best clinical practice.

Planned or active research grants

We have not planned, nor are in receipt of any other research grants for this project.

History of past or existing NIHR programme research

MEDLINE

1. RESEARCH, QUALITATIVE/

2. ATTITUDE TO HEALTH/

3. INTERVIEWS AS TOPIC/

4. FOCUS GROUPS/

5. NURSING METHODOLOGY RESEARCH/

6. LIFE EXPERIENCES/

7. (qualitative OR ethno$ OR emic OR etic OR phenomenolog).mp

8. (hermeneutic$ OR heidegger$ OR husserl$ OR colaizzi$ OR giorgi$ OR glaser OR strauss).mp

9. (van AND kaam$ OR van AND manen OR constant AND compar$).mp

10. (focus AND group$ OR grounded AND theory OR narrative AND analysis OR lived AND Experience$ OR life).mp

11. (theoretical AND sampl$ OR purposive AND sampl$ OR ricoeur OR spiegelberg$ OR merleau).mp

12. (field AND note$ OR field AND record$ OR fieldnote$ OR field AND stud$).mp;

13. (participant$ adj3 observ$).mp

14. (unstructured AND categor$ OR structured AND categor$).mp

15. (maximum AND variation OR snowball).mp

16. (metasynthes$ OR meta-synthes$ OR metasummar$ OR meta-summar$ OR metastud$ OR meta-stud$).mp

17. “action research”.mp

18. (audiorecord$ OR taperecord$ OR videorecord$ OR videotap$).mp

19. exp PAIN/

20. exp ARTHRITIS, RHEUMATOID/

21. exp FIBROMYALGIA/

22. exp OSTEOARTHRITIS/

23. MUSCULOSKELETAL DISEASES/

24. exp ARTHRITIS/

25. 1 OR 2 OR 3 OR 4 OR 5 OR 6 OR 7 OR 8 OR 9 OR 10 OR 11 OR 12 OR 13 OR 14 OR 15 OR 16 OR 17 OR 18

26. 19 OR 20 OR 21 OR 22 OR 23 OR 24

27. 25 AND 26

28. cancer.mp

29. 27 NOT 28

30. 29 [Limit to: English Language and Humans and (Age Groups All Adult 19 plus years)];

Allied and Complementary Medicine Database

1. exp MUSCULOSKELETAL DISEASE

2. exp LOW BACK PAIN/ OR exp BACK PAIN/ OR exp MUSCULOSKELETAL PAIN/

3. exp ARTHRITIS/

4. exp ARTHRITIS RHEUMATOID/

5. exp FIBROMYALGIA/

6. exp PAIN/

7. EXPERIENCE.ti,ab

8. ATTITUDE.ti,ab

9. QUALITATIVE.ti,ab

10. (qualitative OR ethno$ OR emic OR etic OR phenomenolog).mp

11. (hermeneutic$ OR heidegger$ OR husserl$ OR colaizzi$ OR giorgi$ OR glaser OR strauss).mp

12. (van AND kaam$ OR van AND manen OR constant AND compar$)

13. (focus AND group$ OR grounded AND theory OR narrative AND analysis OR lived AND experience$

14. OR life).mp

15. (theoretical AND sampl$ OR purposive AND sampl$ OR ricoeur OR spiegelberg$ OR merleau).mp

16. results.

17. (field AND note$ OR field AND record$ OR fieldnote$ OR field AND stud$).mp

18. (participant$ adj3 observ$).mp; 397 results.

19. (unstructured AND categor$ OR structured AND categor$).mp

20. (maximum AND variation OR snowball).mp

21. (metasynthes$ OR meta-synthes$ OR metasummar$ OR meta-summar$ OR metastud$ OR meta-stud$).mp

22. “action research”.

23. PATIENT ACCEPTANCE OF HEALTH CARE/

24. INTERVIEWS/ OR interview$.af

25. 1 OR 2 OR 3 OR 5 OR 6 OR 8

26. 9 OR 10 OR 11 OR 12 OR 13 OR 14 OR 15 OR 16 OR 17 OR 18 OR 19 OR 20 OR 21 OR 22 OR 23 OR 34

27. 25 AND 26

28. child$.af

29. 27 not 30

30. cancer.ti,ab

31. 31 NOT 32 [Limit to: (Languages English)]

Cumulative Index to Nursing and Allied Health Literature

1. qualitative OR ethno$ OR emic OR etic OR phenomenology$

2. hermeneutic$ OR heidegger$ OR husserl$ OR colaizzi$ OR giorgi$ OR glaser OR strauss.mp

3. van AND kaam$ OR van AND manen OR constant AND compar$.mp

4. focus AND group$ OR grounded AND theory OR narrative AND analysis OR lived AND experience$

5. OR life AND experience$.mp

6. theoretical AND sampl$ OR purposive AND sampl$ OR ricoeur OR spiegelberg$ OR merleau.mp

7. field AND note$ OR field AND record$ OR fieldnote$ OR field AND stud$.mp

8. participant$ adj3 observ$.mp

9. nonparticipant$ adj3 observ$.mp

10. unstructured AND categor$ OR structured AND categor$.mp

11. maximum AND variation OR snowball.mp

12. exp QUALITATIVE STUDIES/

13. exp PHENOMENOLOGY/ OR exp ETHNOGRAPHY/

14. exp OBSERVATIONAL METHODS/

15. exp LIFE EXPERIENCES/

16. exp ETHNOLOGICAL RESEARCH/

17. exp ETHNONURSING RESEARCH/ OR exp FOCUS GROUPS/

18. exp GROUNDED THEORY/ OR exp PHENOMENOLOGICAL RESEARCH/

19. exp QUALITATIVE VALIDITY/ OR exp PURPOSIVE SAMPLE/ OR exp theoretical sample/

20. exp FIELD STUDIES/ OR exp FIELD NOTES/

21. exp CONTENT ANALYSIS/ OR exp THEMATIC ANALYSIS/

22. metasynthes$ OR meta-synthes$ OR metasummar$ OR meta-summar$ OR metastud$ OR

23. meta-stud$.mp

24. exp OSTEOARTHRITIS/

25. exp ARTHRITIS/

26. exp FIBROMYALGIA/

27. exp DIAGNOSIS, MUSCULOSKELETAL/ OR exp MUSCULOSKELETAL DISEASES/ OR exp MUSCULOSKELETAL SYSTEM/

28. exp ARTHRITIS, RHEUMATOID/

29. cancer.ti,ab

30. 1 OR 2 OR 3 OR 4 OR 5 OR 6 OR 9 OR 10 OR 11 OR 12 OR 13 OR 14 OR 15 OR 16 OR 17 OR 18

31. OR 19 OR 20 OR 21

32. exp CHRONIC PAIN/ OR exp PAIN CLINICS/ OR exp BACK PAIN/

33. 25 OR 26 OR 27 OR 29 OR 31 OR 34

34. 34 AND 35

35. 36 NOT 32[Limit to: (Language English) and (Age Groups All Adult)

PsycINFO

1. (“semi-structured” OR semistructured OR unstructured OR informal OR “in-depth” OR indepth OR

2. “face-to-face” OR structured OR guide OR guides) adj3 (interview* OR discussion* OR questionnaire*).mp

3. (focus AND group* OR qualitative OR ethnograph* OR fieldwork OR “field work” OR “key

4. informant”).mp

5. exp QUALITATIVE RESEARCH/ OR exp INTERVIEWS/ OR exp GROUP DISCUSSION/ OR

6. qualitative study.mp

7. exp CONTENT ANALYSIS/

8. exp LIFE EXPERIENCES/

9. exp PHENOMENOLOGY/

10. exp ETHNOGRAPHY/.

11. exp BACK PAIN/ OR exp CHRONIC PAIN/ OR exp PAIN/ OR exp PAIN MANAGEMENT/

12. exp MUSCULOSKELETAL DISORDERS/ OR exp MUSCULOSKELETAL SYSTEM/

13. exp ARTHRITIS/ OR exp RHEUMATOID ARTHRITIS/

14. exp ARTHRITIS/ OR exp KNEE/ OR exp PAIN/ OR exp HIPS/ OR exp CHRONIC PAIN/ OR exp

15. PAIN MANAGEMENT/ OR exp RHEUMATOID ARTHRITIS/

16. exp FIBROMYALGIA/

17. 1 or 2 or 3 or 4 or 5 or 6 or 7 or 8 or 9 or 10

18. 11 or 12 or 13 or 14 or 15

19. cancer.mp

20. 16 AND17

21. 19 AND18

22. 20 [Limit to: English Language and (Age Groups 300 Adulthood age 18 yrs and older)]

EMBASE

1. (hermeneutic$ OR heidegger$ OR husserl$ OR colaizzi$ OR giorgi$ OR glaser OR strauss).mp

2. (van AND kaam$ OR van AND manen OR constant AND compar$).mp

3. (focus AND group$ OR grounded AND theory OR narrative AND analysis OR lived AND experience$ OR life).mp

4. (theoretical AND sampl$ OR purposive AND sampl$ OR ricoeur OR spiegelberg$ OR merleau).mp

5. (participant$ adj3 observ$).mp

6. (unstructured AND categor$ OR structured AND categor$).mp

7. (maximum AND variation OR snowball).mp

8. (metasynthes$ OR meta-synthes$ OR metasummar$ OR meta-summar$ OR metastud$ OR meta-stud$).mp

9. (metasynthes$ OR meta-synthes$ OR metasummar$ OR meta-summar$ OR metastud$ OR meta-stud$).mp

10. “action research”.mp

11. (audiorecord$ OR taperecord$ OR videorecord$ OR videotap$).mp

12. (field AND note$ OR field AND record$ OR fieldnote$ OR field AND stud$).mp

13. (qualitative OR ethno$ OR emic OR etic OR phenomenolog).mp

14. exp QUALITATIVE ANALYSIS/ OR exp QUALITATIVE RESEARCH/

15. exp PHENOMENOLOGY/

16. exp GROUNDED THEORY/ OR exp NURSING METHODOLOGY RESEARCH/

17. exp EXPERIENCE/

18. 1 or 2 or 3 or 4 or 11 or 5 or 6 or 7 or 8 or 9 or 10 or 13 or 14 or 15 or 16 OR 17

19. exp CHRONIC PAIN/ OR exp HIP PAIN/ OR exp KNEE PAIN/ OR exp LOW BACK PAIN/ OR exp 20. MUSCULOSKELETAL PAIN/ OR exp PAIN CLINIC/

20. exp OSTEOARTHRITIS/

21. exp RHEUMATOID ARTHRITIS/

22. exp FIBROMYALGIA/

23. 19 or 20 or 21 OR 22

24. 18 AND 23

25. cancer.mp

26. 24 NOT 25

27. 25 [Limit to: English Language and (Human Age Groups Adult 18 to 64 years or Aged 65+ years)]

Health Management Information Consortium

1. exp QUALITATIVE ANALYSIS/ OR exp QUALITATIVE RESEARCH/ OR exp QUALITATIVE TECHNIQUES/

2. exp NURSING RESEARCH/

3. exp INTERVIEWS/ OR interview$.mp

4. phenomenol$.mp

5. exp BACK PAIN/ OR exp LOW BACK PAIN/ OR exp PAIN/ OR exp PAIN CLINICS/ OR exp PAIN MANAGEMENT/

6. Chronic ADJ pain.mp

7. exp ARTHRITIS/ OR exp RHEUMATOID ARTHRITIS/

8. exp OSTEOARTHRITIS/

9. exp FIBROMYALGIA/

10. exp MUSCULOSKELETAL SYSTEM DISEASES/

11. 1 or 2 or 3 or 4

12. 5 or 6 or 7 or 8 or 9 or 10

13. 11 AND 12

14. cancer.mp

15. 13 NOT 14

16. child$.mp

17. 15 not 16 [Limit to: (Language Type English)]

Musculoskeletal second-order constructs

Aegler 2009:312 challenge to finish performance

Frequently not able to finish a performance and needed strong intent. However, occupations completed even if body racked by pain as this brought a sense of satisfaction. Sometimes completed task in spite of potential consequences and increased pain (e.g. because of social pressure, reminded of old self, sick of interruptions).

Aegler 2009:312 performing as an ongoing attraction

Describes how keeping occupied is important; organise and adapt occupations to remain active. Participants engaged in joyful occupations when they felt low levels of pain to be able to be attracted by their doing and not go off the things they loved to do. However enjoying an occupation did not have an impact on the pain.

Aegler 2009:312 taking breaks not easy

Interruption became a pattern of behaviour. Difficult to switch off emotionally and cognitively during breaks. Organised performance around breaks. Three strategies to manage interruptions:

a. constant awareness of body in order to know when to take a break. This reduced concentration on the activity itself (I am not really present) and therefore difficult to attain quality of activity

b. fixed day schedule; planned activities and breaks. This could be frustrating if couldn’t comply with it

c. split goals into sub goals so could still enjoy a result.

Afrell 2007:372 acceptance typologies – active process of change

Pro-active decision to make adaptations. ‘a change from an earlier, more or less, total lack of body awareness to a relation where the body is looked upon as a speaking partner and a teacher. In this interplay, the subjects have grown as individuals and have begun to look at their future with optimism, although they know it will require great effort’ (p. 295).

Afrell 2007:372 acceptance typologies – hope and resignation

Self; the profound change of life conditions imposed by constant pain, puts the subject into a state of ambivalence. Oscillate between accepting and refusing the aching body: hope/despair. Ambiguous relationship with body; listen to body/shut it off. Acceptance is a process punctuated with bouts of fighting against pain and giving-up of hope. Balance returns as one realises that acceptance of pain is the only way forward.

Afrell 2007:372 acceptance typologies – rejecting the body

‘Integrating the aching body is totally impossible. The ache is neither possible to comprehend, nor accept, and it is unfair. The body is an enemy . . . there is a tiny little hope of recovery’ (p. 294). Rejection of body makes it disconnected from the self and self-esteem diminished.

Afrell 2007:372 acceptance typologies – surrendering to fate

‘Listening to the signals of the body comes quite naturally in everyday life. There is a sensitive cooperation between self and body’ (p. 293). Come to accept pain and the unpredictability of the body as part of life. Acceptance of aching body. Imagery of the body being broken into pieces by pain but brought together as a whole by sheer acceptance of, and adaptation to, the unpredictability of pain.

Allegretti 2010:313 goal to reduce pain

Patients described primary goal to reduce pain (versus physician which was to improve function). Patients described their frustration at the lack of pain relief and questioned their doctors’ understanding that their pain was ‘real’. Felt that physicians were unable to effectively treat pain and physician blocked prescription of pain medication for fear of addiction [this differs from other studies? USA].

Allegretti 2010:313 importance of diagnosis

Patients continued to seek a biomedical test for their pain (versus physician). Discouraged by negative test results.

Allegretti 2010:313 biomedical versus biopsychosocial

Patients adhered to biomedical explanatory model and emphasised the concrete physical explanations [versus physician who used bio-psychosocial model].

Bair 2009:314 barriers to self-management – fear of hurt

Fear of increased pain – acute fear of aggravated pain if one exercises.

Bair 2009:314 barriers to self-management – GP just describes painkillers

No instruction given in pain self-management strategies from primary care physicians, instead physicians almost exclusively relied on analgesics to treat pain.

Bair 2009:314 barriers to self-management – lack of social support

Lack of understanding and encouragement at home and at work is a barrier to self-management.

Bair 2009:314 barriers to self-management – pain

Though desire for activity may be strong, pain imposes limitations to exercising.

Bair 2009:314 facilitators – relieve depression

Relief of depression – improved mood, ‘mental focus’, motivation, and a more positive outlook that all contributed to patients being able to better manage their pain.

Bair 2009:314 facilitators – social comparison

Comparing oneself with others – others patients perceived as worse off (in greater pain) than themselves bolstered ability to not dwell on one’s own pain so much and put their pain in perspective.

Bair 2009:314 barriers to self-management – strategies do not work

Difficulty in doing the exercises and experiencing exercises as ineffective also a barrier. Why do it if it does not work?

Bair 2009:314 barriers to self-management – stress and depression

Depression and stress contribute to lack of motivation to undertake self-management.

Bair 2009:314 facilitators – support of others

Support of others; empathy, encouragement, understanding and cheer from family, friends, programme care workers and pets buttressed patients against the effects of their pain, while enabling and sustaining participation.

Campbell 2007:315 back to square one

Feel entrapped in a medical system where GP is gatekeeper to other treatments. Reticent to re-engage with a system that previously had little to offer, but things may have moved on now. Feel that a cure (for something so simple) is now possible and should be made available. Tenacity rather than acquiescence evident (versus Illich391).

Campbell 2007:315 future and past

Sense of hopelessness for future. Feelings of uselessness attributed to the dependency that participants felt would naturally ensue as their pain became increasingly intractable.

Campbell 2007:315 getting something done

The reason sufferers pursue treatments or interventions with such a short-lived effect, often at great expense to themselves, is the belief that at least something is being done to alleviate the pain. Something has to be done; having ‘something done’ seen as an ACTIVE endeavour inherent in medical model (even if results short lived). Inability of health-care professionals to find cure is seen as inactivity on their part. There is a responsibility to ‘do something’ to get rid of pain. Metaphors of body as machine used which reinforce dualism of mind and body.

Campbell 2007:315 health professionals (allied)

All sought help from alternative or complementary practitioners and were optimistic about the outcome. Felt that other these knew more about pain than the medical profession and that failure of treatment was due to it not working ‘for them’ rather than limitation of the treatment itself. Practitioner seen as ACTIVE rather than PASSIVE (medics).

Campbell 2007:315 importance of self

Don’t let it beat you; persevere despite pain. Here expectations were focused towards individual ability to persevere despite the pain and what they could do themselves. However pain has negative impact on important relationships which leads them to direct energies further towards pursuit of treatment and cure.

Campbell 2007:315 unmet expectations

Patients expect an explanation, diagnosis, treatment and cure but this is not forthcoming. Leads to frustration and anger at impotence of medical system. Feel that they are not believed because of invisibility of pain; seek to make invisible visible in order to legitimise pain. They have failed a medical test. Anger and frustration at the perceived ineptitude of the medical profession was evident. Leads to engendering personal remedies.

Campbell 2008:316 dependence and social withdrawal

Feelings of dependence dominated this theme with the result that participants chose to withdraw from their social circles rather than to be perceived as a complaining ‘back bore’ or ‘wet weekend’. Image here of growing dependence but a desire not make it noticeable or to complain. Felt accepting help was demeaning and made them feel alienated from former lives.

Campbell 2008:316 normal compared with others

Described how sufferers struggled for normalcy despite their constant pain. ‘There was an almost constant comparison with others being made as they made every effort to not be perceived as malingering’ (p. 386). Patients made ‘an effort to look “normal”; however, paradoxically this often made others think that there was nothing wrong with them’ (p. 386).

Campbell 2008:316 striving for self-management

‘Participants actively sought to empower themselves and to be empowered’ (pp. 387–8). Concerns over side effects and dependency of medication; some preferred to take generic pain medicines to avoid this. Reluctant to discuss with GP who did not condone complementary medications. Some used drugs or alcohol to block out pain. ‘ “Coming to terms” with pain and the related changes in sufferers’ life situations was recognized as a major part of the process of learning to live with chronic pain’ (p. 387). ‘Instead of trying to rid themselves of “it” and embarking on what is often a fruitless search for a cure, they had undertaken to co-exist with “it” ’ (p. 388).

Cook 2000:317 relationship with health-care professional

Overwhelming faith and dependence on health-care professionals.

Coole 2010:318 no employment help from GP – clinicians increase concerns

Advice from health-care practitioners often negative. Warnings linked harm to duties at work and increased concerns about staying in work; ‘be careful’; ‘take is steady’. Did not contact employers or advise on temporary modifications.

Coole 2010:318 no employment help from GP – doubt what GP can offer

Did not expect their GP to give advice regarding work, but only to prescribe medication or issue sickness certificates.

Coole 2010:318 no employment help from GP – GPs write sick notes

GPs wrote sick notes rather than suggesting modifications to work duties. Most of the advice about returning to work did not follow the occupational guidelines and many either did not return to work or had to request additional information on their certificates to permit them adjusted work duties. Some patients felt they simply had to comply with what the GP said. Others signed off work while awaiting tests and results.

Coole 2010:318 no employment help from GP – lack of dialogue between GPs, health-care professionals and employers

Any joined up dialogue and action missing. This need is therefore undertaken by the patient who then worries whether his explanations will be accepted as valid by the employer.

Coole 2010:318 no employment help from GP – no effective advice from GPs

GPs advised them to stay at work but did not understand the difficulties of this or make any helpful suggestions. Information about return to work from GPs inadequate.

Coole 2010:319 concern about sickness record

Concerns that sick leave perceived negatively and had an impact on employment record and job security. Use holiday leave rather than sick leave. Paradox – only seen as legitimate if they have a sick note, not self-certified – so damned if I do and damned if I don’t! i.e. need sick record to be legitimate but don’t want a sick record.

Coole 2010:319 concerns about future at work

Perceived condition as progressive and had concerns about maintaining work or life quality after work. May be unable to enjoy leisure retirement. Also considered effect of ageing on on-going pain.

Coole 2010:319 difficulty coping with flare-ups

Uncertainty at the unpredictable nature of their pain which made them unable to work at times. Effect on consistency of ability to work. Loss of confidence. Concerned that employer would not tolerate this unpredictability.

Coole 2010:319 justifying back pain

Cautious about disclosing pain for fear of appearing as either a fraud or as unreliable due to disability. Wanted to legitimise illness by diagnosis or specific cause. Needed to attribute some cause. Some used their own explanations based on physical origin e.g. wear and tear, heavy lifting.

Coole 2010:319 reluctance to use meds

Although saw medication as main role of GP: sceptical of effectiveness of medication; worried about side effects.

Coole 2010:320 occupational health – advice overcautious

Graded return to duties usually replaced by advice to avoid task altogether (against occupational guidelines). Some remained on light duties long after sick leave.

Coole 2010:320 occupational health – dependent on causation

Employers take up of occupational health advice varied. Employers more likely to listen to advice from occupational health if injury occurs at work. Also influenced by other factors e.g. litigation.

Coole 2010:320 patient control

Easier to modify work and stay at work if had the freedom to make their own modifications to working practise. Small changes could make a lot of difference. Could rely on colleagues but there were limits to this. Flexibility of working for self, enabled them to stay in work. However, if worked alone had no one to share work with and would be committed to finish.

Coole 2010:320 employers – help depends on managers

Some received help from managers and colleagues to adjust their work so they could maintain reciprocal working. Short term flexibility allowed them to feel valued at work. If work was reduced indefinitely then they felt a burden that they were not part of team and that colleagues would not support them indefinitely. Exacerbated by lack of belief and cuts to workforce.

Coole 2010:320 employers – managers with back pain

Perceived managers who had had back pain were more supportive.

Coole 2010:320 occupational health – modifications left to manager

Both manager and physician expected patient to be conduit between occupational health, employer and GP. Lack of a clear and effective communication strategy. No opportunity for consultation or discussion.

Coole 2010:320 occupational health – service for employees

Referral to occupational health left to the manager or employer, with non-systematic procedure in place. Often perceived as employer-led (way of managing absence rather than helping them remain at work). Agreement to attend seen as compulsory and there were concerns over confidentiality or future employability. Decision-making/assessments seemed to be based on discussions rather than an actual visit to the place of work.

Coole 2010:320 employers – overcautious support

Some managers could be overcautious as worried about their responsibility for back pain.

Cooper 2008:322 communication

Communication was important to the individual and an important facet of patient care; ‘good communication involved: taking time over explanations; using appropriate terminology; listening, understanding and getting to know the patient; and encouraging the patient’s participation in the communication process’ (p. 247).

Cooper 2008:322 decision-making

Happy for physiotherapist to make treatment decisions as long as they explained options and aims (good communication), it was based on their expertise and it was tailored to individual needs.

Cooper 2008:322 individual care

Valued being able to ask questions and have their opinions taken on board in deciding course of treatment. Felt physiotherapist should take their lifestyles into account. Wanted care to suit individual needs. Felt a thorough assessment important to facilitating effective individual care. Good communication central to individualised care.

Cooper 2008:322 information sharing

Wanted physiotherapist to explain what was wrong with their back (diagnosis); this need not always met. Peer information sharing generally found to be extremely helpful.

Cooper 2008:322 organisation

This was around access and timelines for treatment. Wanted shorter waits, easy access during flare-up and longer and more frequent sessions.

Cooper 2008:322 the physiotherapist

Patient-centred care a complex combination of factors. Caring important but not integral to patient centred care. Competence (as experts) and personality (pleasant and not abrupt, caring) most valued. Did not blame physiotherapist if rehabilitation did not work.

Cooper 2009:321 typology – non-self-managing looking for cure

Hoping that new treatment would come out that could cure and often seeking alternative treatments. Generally felt that physiotherapy did not meet their goals.

Cooper 2009:321 typology – self-managing but want future access

Self-managing pain but wanted access in future, in particular for flare-ups; saw physiotherapist as expert and felt they needed a continued relationship with them in order to motivate, check or provide reassurance. Some felt telephone checks were adequate; others wanted predetermined checks and others happy with ad hoc arrangement.

Cooper 2009:321 typology – self-managing and do not want future access

A small group felt no need for future contact with physiotherapist as confident in knowledge of appropriate exercises. Many in this group felt physiotherapy not meeting their needs but appreciate being able to make some form of long term contact (e.g. by telephone).

Crowe 2010:374 direct heat (heading doesn’t match concept)

The approach to living with chronic low back pain of ‘putting up with it’ and ‘getting on with it’ pervaded the interviews. Used self-learned strategies (e.g. pacing, diversion). Direct heat was effective in the form of showers, baths, electric blankets or wheat packs.

Crowe 2010:374 taking medication

Preferred over-the-counter medication as opposed to prescribed. Reluctant to use, and when done usually because it was the only way to be able to get on with what they wanted/needed to do.

Crowe 2010:323 alteration to self

Pain had altered the self-image. I am not what I used to be (capable and productive). Tension between what I want to be and how I see myself now. Giving up careers had a particular impact.

Crowe 2010:323 externalisation of the body

Process of ‘objectifying’ body often referred to as ‘listening’ and ‘talking’ to the body. Talked about body as if it was external to the self. Dualism between body and mind. Body external to self.

Crowe 2010:323 need for vigilance

Because it is unpredictable you need to be constantly vigilant about what you were doing and how you move. People became cautious to attempt things they had always taken for granted. Related to body differently; loss of spontaneity even for previously routine activities.

Crowe 2010:323 unpredictability

Pain unpredictable and not related to any trigger. This evoked a sense of one being unable to control the body. A sense of tension it seems, as one waits for pain to ‘appear’ at any time; expecting it without warning.

De Souza 2011:376 children and parents

Physical and emotional burden placed on wider family including grandchildren. Influence of chronic pain spreads up and down the generations. Influence on children age related.

De Souza 2011:376 spouses and partners

Help and support from spouse/partner valued but also caused feelings distress and helplessness. Strain on marital relationships due to both stress and reluctance to have a sexual relationship due to pain. Additional stress of chronic pain can be tipping point for weak relationship, but in other relationships there was closeness and support to deal with the pain together.

De Souza 2011:376 work-related problems

Impacts on ability to work and how a person is viewed in workplace.

Dickson 2003:325 reconstructing meaning of pain – managing and tolerating

Continued to seek out traditional means to manage their symptoms, alongside search for cure. Shift from pain being symptom of disease to being part of ageing [positive view of aging in Korean culture]. Women gained control over their pain and began to interpret their experience as part of growing older.

Dickson 2003:325 reconstructing meaning of pain – striving to reduce pain

Striving to reduce pain using eastern alternative methods, and restore self-esteem by focusing away from one’s pain. They stopped complaining of pain to others and pain became theirs alone.

Dickson 2003:325 reconstructing meaning of pain – struggling to remove pain

Disappointment in western medicine – search (complicated by the language barriers) for cure not met by western or Korean American health-care professionals. Socially shared experiences with similar others lessens sense of isolation in suffering.

Dickson 2003:325 reconstructing meaning of pain – stumbling along with pain

Stumbled along failing to relieve their pain when treated as a disease symptom and realised that western medicine had little to offer. Instead they exchanged experiences with others in pain and realised the benefits of social support and self-care and seeing pain is a sign of ageing.

Dickson 2003:325 reconstructing meaning of pain – suffering with pain

At first women ignored pain but when pain limited activity they sought cause and treatment from western medicine. At this point the pain became a symptom of a disease that could be treated.

Dragesund 2008:326 associations about the body

Body a limitation AND a possibility for some; unpredictable body limits opportunities – body has an existence of its own. Become MORE PRESENT IN THE BODY. New opportunities for participation connected to an increased ability to prevent pain from dominating. Not about controlling body but listening to it. No longer at mercy of the body.

Dragesund 2008:326 aware of body

Greater sensitivity to body and symptoms; different to previous pain free experience of detachment from one’s body. Physical exercise and knowledge of bodily symptoms gave a sense of control over pain and tiredness. Need to respect limits on body (and life) imposed by pain.

Harding 2005:330 living with and planning for the future

With time there came a sense of resignation to the pain and accepting it as a part of life for the foreseeable future. Acceptance of pain and whether it would ever eventually end dominated this theme. Some reported the notion of an increased pain threshold to accommodate the pain. This acceptance marked a significant point of the patients’ pain career and was characterised by a sense of active adaptation.

Harding 2005:330 unmet expectations

A person needs their doctors to bear witness to their pain experience. This has a profound effect on their functioning as individuals. Expectations of medical system are not met. Loss of faith in medical system due to GPs’ inability to diagnose and treat; their lack of time to listen and understand patient condition; disbelief of patient descriptions and lack of concern; not being taken seriously. Could receive a range of different sometimes contradictory opinions from medical professionals as to the cause pain and way to treat it. Search for an alternative remedy is taken up.

Harding 2005:330 making sense of pain

Tried to make sense of the cause of pain by locating it in the context of their lives (e.g. cancer, bereavement, diabetes etc.). Used diverse explanations to explain their pain. Doctors were perceived as not helping them make sense of their pain but only providing a medical interpretation for it. For most, there was a consistent tendency to not wholly subscribe to the medical interpretation.

Harding 2005:330 spoiled identity

The reductions required by chronic pain have an impact on sense of identity and cause people to perceive themselves as different from others. There is a tension between outward appearance remaining ‘normal’ and internal changed identities. Some felt that they had ‘given in’ to pain; other grudgingly accommodated the changes and lowered expectations.

Holloway 2007:379 stigma at work

All described struggle to stay at work and stories of unsympathetic encounters with colleagues who could be hostile. This created an environment of mistrust. Media reports of back pain being ‘real’ reason to be off sick do not help.

Holloway 2007:379 stigma by significant others

Lack of diagnosis and invisibility of pain raised suspicion that pain is not real. Spouses faced isolation, role tension, marital conflict reduced sexual activity. Could lead to divorce. Patients tried to meet the expectations of others, and this could not only aggravate pain but make others feel that they were putting it on.

Holloway 2007:379 stigma in everyday life

Patients felt stigmatised socially for having an invisible illness; people don’t believe that there is anything wrong at all. Provoked by media reports of benefit fraud.

Holloway 2007:379 stigmatisation in health-care systems

Often disbelieved by health professionals and told pain was ‘all in the head’. This has an impact on benefits and compensation as patients perceived as malingerers.

Hunhammar 2009:331 striving to master variable pain – disruptions to daily life

The multidimensional nature of pain and how this impacted on a range of activities associated with living (physical and psychological).

Hunhammar 2009:331 striving to master variable pain – space for health

The experience of chronic non-specific pain added an additional burden to life which required a space to meet these demands such as physiotherapists’ appointments or time to keep fit. Gender differences emerged with childcare a main consideration for women.

Hunhammar 2009:331 striving to master variable pain – strategies for pain control

Balance and concealment of pain were two important approaches to handling pain. Balancing incorporated physical adaptations as well as utilisation or primary care resources. Pain was often concealed from others to avoid feeling negative about experiencing the pain.

Hunhammar 2009:331 striving to master variable pain

This core category describes the variability and unpredictable nature of pain. Thoughts of the future were hopeful but did not include an expectation that there would be a full recovery. Concerns about work emphasised the need to keep on working and not take sick leave. This category included an attitudinal approach to pain which encompassed a ‘getting on with life in spite of the pain’.

Johansson 1996:332 strategies to get doctor’s attention – claiming under cover

Diverse strategies of obtaining information about the illness from the doctor through ‘naive’ questioning.

Johansson 1996:332 strategies to gain self-respect – condemning

Sceptical of usefulness of encounters with the doctor, their willingness to help and their knowledge of the illness.

Johansson 1996:332 experience of distrust

All patients felt distrusted in the consultation by the doctors, and wanted a diagnosis for reasons of credibility. They described a vulnerable position. As patients they were subject to the doctor’s ability to define the illness and decisions over treatment. Concern doctor might turn hostile; felt ignored, disregarded and rejected.

Johansson 1996:332 expectations of a ‘creditable’ consultation

Unfulfilled expectations of the ‘diagnosis’ (i.e. a ‘creditable consultation’) emerged: to be taken seriously, to get time for an informative dialogue, and to achieve an ongoing relationship to the doctor.

Johansson 1996:332 strategies to get self-respect – martyrising

Although they described constant pain, and ‘pilgrimages’ for help to different doctors, they also, conveyed the image of ‘silent sufferer’, never complaining, ‘working beyond’ their power.

Johansson 1996:332 strategies to gain self-respect – mystifying

One way to accept the absence of a creditable diagnosis was to adopt a self-image of being an incomprehensible case. Therefore the doctor was not to be blamed.

Johansson 1996:332 strategies to get doctor’s attention

Dramatic weeping or begging in order to elicit information from the doctor.

Johansson 1996:332 strategies to get doctor’s attention – somatising

All about trying to be seen as a credible (and illness not imaginary) patient by doctor through very physical bodily descriptions to the doctor.

Johansson 1996:332 I am under the doctor now

Image of the doctor as a sort of manager who can be useful in helping patient on the road to recovery, but can limit the patient’s initiative in their recovery process.

Johansson 1997:333 family considerations

Managing job and family responsibilities (such as child care) a balancing act premised on complex choices (fewer hours, working unsociable hours, etc.) in order to make more time for home and the family.

Johansson 1997:333 to get along moneywise

Saw having a job as vital to getting on with life, but stuck with low income jobs, and difficult to get back into education to improve job prospects.

Johansson 1997:333 getting out to be stimulated

A job holds potential for stimulating activity if flexible and not onerous. Described social tensions at their workplace, involving workplace reorganization, threat of redundancy, and some even bullying.

Johansson 1997:333 sick role process

Work capacity constrained by illness. Tensions surrounding inability to work, having to be at home and the desire for financial benefit compounded by a revaluing of more ‘traditional’ family roles (and the woman’s place in the home) – ‘how could I even think of getting a job’. For older participants a feeling of shame at being sick listed along with a sense of entitlement.

Johansson 1997:333 to be somebody

A job could play a part (as one of other factors) in improving one’s self-esteem as individuals felt needed, but many frustrated with lack of recognition. ‘If you don’t have a job you are nobody’.

Johansson 1999:334 consequences for activity

Pain impacted capacity to undertake everyday tasks. Some patients even felt these limitations made them incompetent workers or made them appear to be whiners to family members. The pain limited pleasure in undertaking hobbies.

Johansson 1999:334 bodily presentations

Pain a threat of something going wrong in the body. Pain unpredictable and uncontrollable. Started in a distinct location and then dispersed. Pain a constant invisible alien enemy. Patient feels detached from the painful body part and unable to connect with it as a familiar part of their own body; an uncontrollable intruder; and can be triggered with one small body part being affected, then pain spreading throughout body.

Johansson 1999:334 explanations

Focus here on the patient’s search for the cause of their condition with reasons ranging from physical injuries to emotional tension and even spiritual retribution and genetic predisposition.

Johansson 1999:334 self-perception

Invisibility of symptoms damaging to ones reputation as it evoked disbelief on the part of others. Being at home could increase expectations about household duties. At the same time, if she managed this, then neighbours were suspicious – why can’t she work! Can affect a woman’s very sense of being a capable woman (wife, mother, sexual partner). Uncertain about how to deal with limitations imposed by illness on work capacity, especially as many patients felt that going out to work improved their image socially despite their perpetual struggle with the physical pain.

Liddle 2007:336 expectations from treatment

As individuals took more responsibility for their recovery the need for individual exercise and advice was increasingly important. Supervision was considered important to make individual corrections. There was a need for follow-up and support as this was reassurance that the exercises were being performed correctly.

Liddle 2007:336 treatment received

Disappointment at unmet expectations of treatment. Frustration at inability of medical system to relieve pain, and diversity of attempts to resolve the problem. GPs over-emphasised use of medication. Participants were concerned that this was treating the symptom without addressing the source of their condition.

Lundberg 2007:338 failed adaptation

Did not accept the radical change to lives caused by pain. Frustration, low mood, sleep deprivation, abuse of meds. Avoided movement which aggravated and adopted ‘passive’ strategies; lying down etc.

A strong, well-functioning body was an important source of identity, so this limitation in their ability to use their bodies led to identity loss. The lost identity was expressed as low self-esteem, bitterness, and shame. Exacerbated by negative encounters with health-care professionals and socially. Mourned previous life without pain.

Lundberg 2007:338 finding the way out

Found time to accept body in pain. Positive encounters with others helped this. They had previously taken their bodies for granted and paid no attention to it. The experience of pain forced them to think about their body and in so doing, their existence and identity came into focus. Thoughts about body and mind were more clearly expressed in this than in the other typologies. I have learnt to separate my body from my self; learned new things about themselves. They developed their empathetic abilities and gained patience both with themselves and others. The informants experienced the vibrancy of and the good in life despite difficulties and persistent pain.

Lundberg 2007:338 identity restoration

At first experienced low self-esteem, shame, loss of self, social isolation. Time of chaos and abandonment. Went through a process of reconsidering their existence and identity. A new identity was created based on the reality they had to face. With guidance from physical therapists, the informants achieved increased awareness of their bodies, which helped them to transform their way of being in the world of pain. This gave an increased confidence in the future (with some doubt). Reorientation was described in terms of how their previous life had been re-evaluated and having reconsidered their definition of quality of life.

Osborn 1999:342 comparing this self with other selves

Compare self with others and past/future self.

a. I am not like the old me who was fit and able to work hard. Some defined themselves as bereaved. Grieved for the old self. I am not my happy previous self – look back nostalgically. Painful reminder of loss. Past self considered to represent the real self replaced by new false persona. Pain denies me my right to be me.

b. Fear what future will bring. Feelings of uncertainty.

c. Constantly comparing to others and put emphasis on disability. Took refuge in thinking of those who were worse off, but this could make them think of a possibly worse future (also this does not compensate for my loss).

Osborn 1999:342 not being believed

No visible sign of suffering. Uncertainty about pain made them vulnerable to judgements of those around them. Continual need to justify self. It is real; I am not mad or bad. Faced threat of rejection even by nearest and dearest. Pain has caused a shift in familial reciprocal roles. I am a burden but also people don’t believe me. Lack of credible evidence made them feel guilty of the burden they were placing on their families. Uncomfortable about not being able to reciprocate but becoming the one that is cared for. Appearing too healthy or mobile threatened credibility. Forced to appear ill but this meant bearing burden of not being seen as self by others (‘I’m not a cripple’). Denied opportunity to relate to others in a world free of the influence of pain.

Osborn 1999:342 searching for an explanation

Strong motivation to know why they had pain. Couldn’t believe nothing could be done. Pain felt to have its own volition. Sense of bewilderment of why I am suffering. There must be something wrong. Reality can’t be explained in a meaningful way. Uncertainty and ambiguity pervades.

Osborn 1999:342 withdrawing from others

Rather than meet demands of managing appearance of pain, withdrew from public view. Easier to conceal their condition than rely on the understanding of others. Avoided social events at risk of appearing unsociable. Avoided potential for embarrassment and rejection. Tension with not wanting to become isolated. Relationships at risk. Hide distress to avoid rejection. Dilemma: can’t appear healthy but don’t want to go on about pain and risk rejection. Social world now threatening. Retreated to private world. ‘Social world could not accommodate people who had chronic pain’.

Osborn 2006:343 living with body separate from self

Pain has made me aware of my body now. Separation of painful body from self. Self and body opposing entities. Painful part NOT ME. Unpleasant and relentless presence of a body that is ‘not me’. Living with pain affects who I am [self]. New body alien. I feel powerless against this alien body. Dysfunctional part of body NOT ME. There was a distinction made between the original self and that self which had emerged due to pain.

Osborn 2008:344 fearfulness of pain

Powerful affective element. Describes how pain is sucking the life out of me. Violent imagery of pain. Pain a hostile presence; an aggressor. I am powerless. Pain is a malevolent force intent on damaging me. Pain is malevolent like the ‘devil’ as it harasses and disables. Pain is a parasite. Pain is vindictive. [Anthropomorphising pain – it has a will]. Humiliating and punishing assault from another [person] Pain threatens my body and me. Pain undermines and isolates me socially. Pain is punishing. Pain makes me a monster. Pain makes me not me and intrudes on others. Imagery of isolation. The malice and cruelty they ascribed to their pain interfered with their relationships by making them both intolerant and hostile.

Osborn 2008:344 containing fear through social connection (post-hypnotic intervention)

Pain remained unchanged as an object of thought but they felt better able to manage the fear it evoked. Their pain possessed the same meanings and was no different in its threatening potential and unpleasantness: each participant felt more able to manage his or her pain, they reported an increase in the degree of self-confidence they felt in the face of their on-going pain and a reduction in the level of fear and worry. Therapeutic alliance eased sense of isolation, vulnerability, and fear. Someone else is part of the experience.

Patel 2007:345 personal obstacles – age

Older patients felt double disadvantage of age and disability. Older persons resistant to retraining (as close to retirement) and feared rejection from employers because of their disability.

Patel 2007:345 uncertainty – benefits

Patients not only perceive leaving benefits as risky but also returning back to benefits as time consuming and bureaucratic. Feared leaving benefits but saw employment as making them better off. Return to benefits within a year of coping unsuccessfully with work (government initiative) perceived as daunting and as not offering financial stability.

Patel 2007:345 benefits organisation – (limited)

Limited support on advice from benefits officer about return to work. Felt jobs offered were inappropriate to their condition.

Patel 2007:345 perceptions at work – employers’ limited understanding

Employer support and understanding limited due to a lack of awareness, negative perceptions (that the ill person will frequently be off work) and, perhaps, lack of personal experience. Patients feel that use of walking aids may make their case appear more plausible to employers; However, employers may also see such persons as more ‘risky’ to employ.

Patel 2007:345 perceptions at work – fear of letting employer down

Letting people down was expressed in terms of a threat to the patient’s own self-image as a worker: Some left work voluntarily for fear of letting employers down or not being seen as a good worker.

Patel 2007:345 health-care barriers

Trapped in a cycle of repeated consultations that stopped return to work. Long waits and not being taken seriously by health-care professionals exacerbated this. Some had been classified unsuitable to work by benefits medical officers. This assessment for work eligibility became a deterrent to taking on rehab to return to work.

Patel 2007:345 perceptions at work – job availability

‘Patients held the perception that healthy individuals would be more appealing from an employer’s perspective therefore; there is little point in attempting to return to work’ (p. 837). Reported negative attitude and discrimination from employers exacerbated in competitive work market.

Patel 2007:345 uncertainty – pain and health

The unpredictability of the severity of pain and limitation, and the duration of a flare-up made it very difficult for patients to foresee how they would cope with returning to and remaining in work: inability to cope with fluctuating nature of pain makes return to work less possible (as flexible working patterns not very common). Disadvantage in competitive working market.

Patel 2007:345 benefits organisation – permitted work

Government initiatives to ease patients back into work are perceived by patients as limiting their capacity to earn, while placing them in the additional dilemma of having to choose to remain in work or cease working once permitted work period ends.

Patel 2007:345 psychological barriers

Sense of being unable to control/manage pain leads to feelings of low mood, depression, fear, loss of confidence and frustration, heightened by limited positive treatment outcomes and disappointing results of high expectations from health care. The search for other medical treatments results in a cycle of consultation that can be frustrating.

Patel 2007:345 personal obstacles – qualifications and experience

High-level skills could be a barrier for return to work as applicants did not want to be trapped in a job that was not commensurate with their level of training. Those with low level skills thought lack of training was also a barrier to return to work.

Patel 2007:345 perceptions at work – resistance to change

Anxious about prospect of having to change job or field.

Patel 2007:345 benefits organisation – staff skills

Benefits officers lacked skills to help return to work for patients with chronic pain. Focus on unemployment rather than returning to work with chronic pain. Most dreaded attending for an assessment.

Patel 2007:345 uncertainty – future

Pessimistic about future and avoided thinking about it. Unable to plan a return to work because of unpredictable nature of pain. Lived day by day rather than making plans they could not realise.

Patel 2007:345 uncertainty – working capacity

Did not feel that they had received advice on what type of work they could return to and that benefits officers lacked skills to do this. Some reported being advised not to return to work by their GPs.

Rhodes 1999:350 aligned or alienated

Aligned – tests fit the anatomical model. For some patients diagnostic tests produce ‘results’ (‘black and white’ X-rays, tests) for which the visual image corresponds exactly with their experience of pain. Tests seem so positively transparent and simplistic; they give proof. Deviation should show up and be susceptible to repair.

Alienated – don’t fit anatomical model; feel guilty and disillusioned. Some experienced a discrepancy between their own ‘inner’ experience of pain and the diagnosis and needed to legitimise what they felt. This can lead to feelings of guilt, disillusionment with medicine, doubts about the tests and frustration. (I am certain but I have no proof).

Rhodes 1999:350 anatomical body

Anatomical understanding corresponds to visual images of the inside of the body. We perceive that variations can be measured based on what is typical and what is deviant. While in pain awareness of the body increases, becoming an ‘alien presence’ or ‘foreign thing’. Pain patients may see ‘images’ of their pain specific to their own cultural model.

Sanders 2002:353 cultural connotations of ageing

Change in expectations came with older adulthood BUT at the same time the desire to distance themselves from the negative stereotypes of old age; e.g. embarrassed about walking sticks. Want to present an image of ‘ageing well’ i.e. not conforming to stereotypes. Striving to appear ‘normal and without arthritis’. Ambiguity – old age made disability become invisible ‘you cannot be considered old and disabled’; i.e. they were not viewed as being legitimately disabled because they were old. ‘operating simultaneously in creating an experience of symptoms which is both biographically normal and abnormal’.

Sanders 2002:353 disrupted biographies

Although ‘normal’, pain also disruptive; effect on relationships, isolation, depression, and fear of dependence in future. Varying degrees of social or relational disruption due to illness. However this ‘talk’ of disruptive biography balanced with playing down the significance of osteoarthritis and ‘putting on a brave face’. There was a degree of stoicism in their accounts. Family relationships paradoxical: a source of both support and conflict. Participants experienced fear of possible future dependency affecting relationship with extended family, but seemed more positive about relations with a disabled spouse with whom there was mutual support.

Sanders 2002:353 normal aspect of biography

Pain is a normal inevitable part of ageing; normal and integral to biography; an ‘expression of their history’; Onset often tied up with biography e.g. varying hardship; bound up with self. Reluctant to seek treatment, ‘there is nothing they can do’. Those with rapid onset and deterioration and younger adults did see this as disruptive to self and ‘not normal’ (e.g. hereditary, trauma).

Satink 2004:354 aiming to collaborate with pain

Found ways to build relationship with their pain and to accept it [up to a point].

Pain become part of me; learnt to listen and accept it as part of me. Became focused on the present moment. became more aware of need to participate and care for others.

Satink 2004:354 aiming to be normal

Image of struggle to not accept pain of its limitations, but be as active as previously/normally was. Recognise pain has ‘won’ and overpowered them. A losing battle and growing realisation of need to change behaviour due to pain.

Satink 2004:354 aiming to control and reduce

Hope that less social/occupations participation would mean less pain. This way of controlling pain results in emotional pain due to the effects of this withdrawal; imprisoned in a very small world of limited daily activity. Further, despite this sacrificial adaptation the physical pain remained.

Skuladottir 2011:355 quest for normalcy – avoid sick role and maintain dignity

Took trouble to maintain appearance which meant that some did not realise or understand how they felt. Some tried to hide pain or conceal that there was anything wrong. Wanted to appear normal and maintain a sense of dignity. Felt this was respectable and made them more like ‘normal’ people’. If you look too good it doesn’t look like you are suffering.

Skuladottir 2011:355 quest for normalcy – need to participate

Need to participate in family activities even if it makes me worse for a while. Being an observer increases isolation. Having a job, being involved, being active and participating important. ‘Give up and be depressed or to try to live a good life with this’.

Skuladottir 2011:355 quest for normalcy

Retain optimism hope positive thinking goals at same time be realistic. Although pain has changed me I am still a strong person. Gaining a sense of achievement from the things I CAN do. More of a focus here on positive thinking and seeking meaningful activities to occupy time and focus in order to maintain good mood and optimism.

Skuladottir 2011:355 quest for normalcy – involved in decision-making

Women felt they were the experts in their own pain and valued participation in decision-making surrounding pain. Realised the limitations of health-care professionals and that I am the expert of my pain. I am in charge.

Skuladottir 2011:355 quest to learn to live with pain – need diagnosis

Diagnosis – the women ambivalent about getting a diagnosis: not having one increased probability of stigma and label of its all being in ‘the mind’. Receiving a diagnosis made some patients feel they may be ill for life.

Skuladottir 2011:355 quest to learn to live with pain – need for effective treatment

Effective treatment – pain alleviation/coping strategies ranged from exercise and reflexology, to diet, distraction and medication. Some made unilateral decision to stop taking medication.

Skuladottir 2011:355 quest to learn to live with pain – need for help, advice and information

Most had experienced a lack of information and felt they were left to fend for themselves and find out information about their illness. Sought advice from health-care professionals but communication itself important. ‘An approachable health professional not only gave information and advice but allowed expression on their part as well’ (p. 85).

Skuladottir 2011:355 quest to learn to live with pain – need to take care of self and find a new pace

Slow process; need to learn to protect self from unfair demands. Found a new pace and pattern of life through organising and preparing self.

Skuladottir 2011:355 quest for support, caring and connection – need for health-care professional

Professional support from health-care professionals valued for the encouragement provided during early stages of pain. Health-care professional care through listening and concern also valued, with patients not receiving this frequently experiencing dejection and misery.

Skuladottir 2011:355 quest for support, caring and connection – need for practical support

Torn between wanted to keep role and do household tasks themselves but needing help. Some obliged to do it because nobody else did it.

Skuladottir 2011:355 quest for support, caring and connection – need someone who cares

All felt a need to share their experience with someone (family) close who cared about them, and not to feel as though they were bearing the burden alone.

Skuladottir 2011:355 quest for support, caring and connection – need to be connected and care for someone

Caring for children increase pain but was satisfying and fulfilling. They were needed and had a role. Someone relies on me and this drives me on.

Slade 2009:356 engagement with health care – ask me

All participants reported that engagement with their health-care provider improved if they were explicitly asked for their opinions and goals.

Slade 2009:356 engagement with health care – assertiveness

They acquired an ability to assert their needs through a process of trial and error.

Slade 2009:356 engagement with health care – continuity and connectedness

Poor continuity of care and abandonment by care providers was perceived by all participants. Follow-up contact valued.

Slade 2009:356 listen to me – explain it so I can understand (title doesn’t match concept)

Need a ‘competent and empathetic listener’. Health-care professional needs to listen and be empathetic; I am not taken seriously; I have to keep telling my story; listen to what I am saying.

Slade 2009:356 listen to me – I know my body

Learned about responses of body and limitations imposed on it by pain over time. This knowledge empowers.

Slade 2009:356 engagement with health care – partnership

‘All participants expressed the need for mutual enquiry, problem-solving, negotiation and renegotiation between care-provider and care-seeker to establish mutual therapeutic goals’ (p. 273). Patients wanting to feel that their opinions are sought and considered through every part of their care pathway.

Slade 2009:356 engagement with health care – understand me

Desire for care providers to view them holistically and consider their life circumstances, personal preferences and their perceptions in order to develop individualised exercise programmes.

Slade 2009:357 stigma – community, friends and family

Judgement extended to family, friends and community. People see back pain as an excuse for non-participation and poor performance. The invisibility of pain is a barrier to legitimacy.

Slade 2009:357 stigma – pathology-driven validation

Medical validation valued as it bestows credibility. Absence of validation is a significant barrier to participation; it is physiologically, psychologically and socially disabling. Patients felt validity of illness in question as imaging tests revealed no cause/evidence of pain. Expressed relief when an X-ray or MRI demonstrated pathology. Compounded by misdiagnosis or change in imaging findings. Feel need to legitimise self as not ‘mad’ or ‘bad’.

Slade 2009:357 stigma – sickness versus wellness model

Participants’ feelings ranged from anger to frustration in their search for understanding, legitimacy, validation, and knowledge, and this highlights the dominance and essential weakness of the biomedical model to their situation. The medical model makes it difficult to engage in treatment and regain control of their lives. Current societal attitudes reinforce these obstacles. Preferred incorporation of ‘normalcy’ rather than ‘sickness’ in rehabilitation.

Slade 2009:357 stigma – relative positioning

Comparing themselves with other patients helped some patients gauge severity of their own condition. Some were judgemental of others with back pain.

Slade 2009:357 stigma – health-care professionals

A long patient journey reported, in their search for knowledge of illness, and appropriate and empathetic care. Majority unsatisfied with encounters with health-care professionals. They felt blamed, guilty, perceived as having an ulterior motive (such as seeking gain through their illness), or that were imagining it. Perception that practitioners did not position them as capable of understanding pathology or management approaches. They wanted to feel valued, believed and connected with practitioner. Felt practitioners emphasised medication and did not give advice; they lacked empathy and understanding and did not seem to take them seriously.

Slade 2009:357 tell me

Strong motivation to understand their pain. Patients wanted lots of information in a clear jargon-free way that they can understand.

Slade 2009:357 stigma – workplace

Many felt responsible for back injuries despite poor workplace policies. This guilt compounded by judgements by colleagues. Culture of judgement exacerbated by compensable bodies. Reputation for being ‘workshy’ despite attempts to stay in work.

Smith 2007:66 continuum or trajectory

Paradox:

a. Use strategies to try and prevent erosion of ‘good’ self.

b. At the same time a resignation that pain has irreparably altered self.

This represents as a process along a continuum. Cannot tell if this necessarily a process from one to the other or could go in either direction. Over time ability to wrestle self back from the pain. Initially fight to be same as always, realise it is not possible and therefore adapt into new person with chronic pain as part of who they are.

Smith 2007:66 directing it at others

Negativity contaminates relationships. Patients felt that their internal negative emotions brought on by chronic pain are directed outwardly to others in the form of malevolence and spite in taking pleasure in the suffering of others. Narrative – My pain is so bad that I am a terrible person now; it is so bad it has changed who I am. An expression of lasting change; this is how bad the pain is.

Smith 2007:66 negative impact on self

Pain significantly impacts on one’s identity and perception of self, resulting in denigrative mental inner conflict between the ‘two selves’: the ‘mean me’ and the ‘nice me’. There is a battle to ‘retain a good self’ and this struggle can be more distressing than even the pain itself.

Smith 2007:66 public arena makes it worse

Social isolation appealing as less pressure to hide ‘miserable self’. Patients felt reduced to ‘a bit of a person’ as unable to fulfil (familial) roles to their ideal standards; felt vulnerable to ridicule or punishment from others; and felt perceived as a ‘burden’ and without ‘value’ by society. Sense of SHAME.

Smith 2007:66 the sting in the tail

Concealed pain for fear of social judgement and consequences. Feared retribution for ‘mean’ behaviour premised on a ‘moral’ sense that ‘what goes around comes around’. Sense of justice – I will be punished for becoming so bad. Linked to a sense of SHAME and retribution.

Snelgrove 2009:358 maintaining integrity – cause of pain

Explanation for pain physical not psychological; often described as caused when doing something virtuous. Patients’ explanations couched in a previously virtuous life (moral narrative) and they are therefore blameless.

Snelgrove 2009:358 crucial nature of pain – emotional response

Low mood and anger impact negatively on relationships with others including health-care professionals and inwardly to self.

Snelgrove 2009:358 crucial nature of pain – loss of social role

Discrepancy between present and past self. Loss of independence and family role compared to the past.

Snelgrove 2009:358 crucial nature of pain – loss of spontaneity

Loss of ability to do even most mundane and taken for granted activities of daily living. Loss of spontaneity; need to plan everything I do.

Snelgrove 2009:358 managing the pain – medication dependency

Ambivalent relationship to medications as even though medication needed to relieve pain, it can be ineffective and lend to one becoming medication-dependent.

Snelgrove 2009:358 maintaining integrity – not being believed

Difficult to maintain credibility due to invisibility of pain and disbelief.

Snelgrove 2009:358 crucial nature of pain – body/self/pain as a threat

Body separate from real self. IT (pain) versus ME (body). Pain threatens to take over self by taking ownership of body.

Snelgrove 2009:358 crucial nature of pain – physicality

Emphasised physicality of pain: unpredictable, hopeless, intrusive, overwhelming, unbearable.

Snelgrove 2009:358 managing the pain – relationship with health-care professionals

Loss of faith in medication and the health professionals but continued to adhere to a medical model and continued to have faith in medical technology.

Steen 2001:385 awareness of self

Now more aware of self and body in everyday life and did things differently.

Steen 2001:385 community

Being in within the walls of ‘the room’ brought a sense of relief, sharing and community, validation and safety to many.

Steen 2001:385 accepting self and others

Acceptance – of self and others increased as group discussions allowed for comparisons and validation. Being able to express innermost thoughts and feelings (and to cry) valued by patients and appeared to impact positively on their self-esteem.

Steen 2001:385 change of focus

Increased consciousness of bodily signals and of how one needs to respond to these (rather than ‘fighting the pain’) in order to effectively manage pain. This may require a change in one’s way of thinking.

Steen 2001:385 drop-outs

Some patients not comfortable with psychological inference, physical proximity and embarrassment of exercising.

Steen 2001:385 experimenting

Narrative of discovery [learning to trust own opinions]. This seemed to capture how the group and leaders gave them permission to explore, be curious and be creative. The feelings generated to be celebrated and not hidden. A respect for patient opinions about illness and exercise choices although they may have limited experience of these processes. Also seems to be about patients valuing freedom to try things out, such as different methodological approaches (and make mistakes), rather than only following the instructions from health professionals.

Steen 2001:385 gender

While some felt that discussions would have been ‘different’ if men participated in their group, some males were glad to have been able to be a part of a group.

Steen 2001:385 group leaders

The humankind of believing the patient – different from usual health-care professionals. Behaved like human beings and treated patients like one. This did not impact on professionalism in a negative way (rather positively). Valued if they joined in not just issued instructions.

Strong 1995:387 how are you coping?

Most patients perceived themselves as ‘copers’ being able to get on with life, despite pain. This perception appears to be characterised by an attitude of acceptance of pain over time. Where such acceptance was absent (usually for a patient still relatively new to the pain), it was usually characterised by attempts to ignore pain as an approach to managing it.

Strong 1995:387 what helped you to cope?

Distinct changes over time for the majority of patients as they realised that pain might be there to stay. However they remained open to any new advancement. This realisation was usually accompanied by accepting responsibility for managing pain, and appreciating the roles of planning, compromising and prioritising in undertaking tasks. Get the maximum you can out of life because life goes on – the pain is always going to be there regardless of what you do, so get out and do it. A general sense that inactivity was not a viable option as it only made the pain worse. Movement here from high patient expectations of an omniscient health professional, to greater self-reliance in addressing the symptoms of their illness.

Teh 2009:362 participation in pain treatment – don’t want to be harmed

Some patients wanted to maintain a compliant [traditional] relationship with their doctor and be seen as a ‘good patient’; for some this was because of fear of harm if you didn’t do as the doctor told you – the doctor knows best.

Teh 2009:362 importance of relationship with health-care professional

Relationship with health-care professional valued: being understood, seeing them as a person, being remembered and continuity of care means that you feel known, safe and legitimate. Being unknown, not heard or understood means isolation and de-legitimacy.

Teh 2009:362 participation in pain treatment – involved in decisions

Patients were involved in decisions by rejecting or withdrawing from suggested treatments, or by asking for specific treatments. Those who had a good relationship with the health-care professional were more successful self-advocates. Power to take control of treatments may lead to withdrawal from treatment and subsequent suffering. Mixed view about speaking up and being assertive about health-care needs and options.

Teh 2009:362 participation in pain treatment – working outside health-care professional relationship

Patients sometimes changed pain medications without consulting health-care professional, due to dislike of pain medications and fear of reliance on these. Working on own to manage pain: change own medication, taking supplements or exploring alternative remedies. Patients resourceful in accessing alternative health strategies.

Toye 2010:363 loss of credibility

Most described situations where they had not been believed by healthcare professionals, friends, family or colleagues. Difficult to appear credible when you have back pain because; it is very common, symptoms continually vary, it is medically invisible; a person looks well. It also is stigmatised and carries various stereotypes.

Toye 2010:363 could I be imagining this

Paradox:

a. I need a diagnosis to be legitimate (even though this is counterintuitive because I don’t want to be ill).

b. However, I know that psychosocial factors contribute to my pain (mind over matter metaphor).

Toye 2010:363 I am not like the others

Paradox:

a. Meeting others with pain confirmed legitimacy.

b. BUT I am not like the others. Patients were ambivalent in their relationships with other patients, and also stressed how they were ‘not like them’. Social comparison and moral narrative used to rank self and confirm legitimacy.

Toye 2010:363 I am still me but not me

Paradox:

a. You have to learn to live with it [use of cultural rhetoric].

b. I am still me and I will fight to be [use of cultural rhetoric].

These are not mutually exclusive; can accept defeat but still fight on [lose battle; win war].

Toye 2010:363 mustn’t look too ill

Paradox:

a. Consistency or persistence of pain behaviour an important dimension of judging whether or not someone was genuine.

b. But don’t look too ill all the time or people won’t believe you. There is a ‘right way to be in pain’.

Patients had to negotiate a balance between not looking ‘too ill’ and yet looking ill enough. Often resolved this by hiding their illness even from those close to them.

Toye 2012:364 being fobbed off

This describes how patients felt that they were not being listened to or understood as a person whose life had been changed by back pain.

Toye 2012:364 being fobbed off – I see buckets of people like you

GPs make light of something that is very serious to the person (I see loads like you, there is nothing much wrong with you), and this also makes them feel guilty for wasting doctors time.

Toye 2012:364 being fobbed off – just take the tablets

Saw GPs as keen to dish out drugs and this was not a cure. Medication was described as part of the process of being ‘fobbed off’. Particularly annoyed if given anti-depressants as not seen as dealing with real pain.

Toye 2012:364 being fobbed off – I just want to be heard

Patients described how it was important to know that the GP understood them as an individual and the impact the pain was having on their lives.

Toye 2012:364 being fobbed off – I didn’t get a thorough examination

Did not accept that a doctor could diagnose a problem without performing a thorough examination, including physical and diagnostic tests such as palpation, X-rays, scans or blood tests. Patients interpreted this as a) not being believed or b) not being taken seriously.

Toye 2012:364 you are just a GP – not leaving until I see a specialist

Patients described the GP’s reluctance to refer to the specialist. They felt they had to make a strong case for their referral or the GP would not ‘sign that piece of paper’. This was described as a battle and some described feeling guilty for putting pressure on the doctor.

Toye 2012:364 being fobbed off – nothing else we can do

Patients described how the doctor told them to accept their pain and to get on with life, perhaps even to expect things to become worse. This left them feeling that they had not been heard or taken seriously. There was a nagging doubt that for some that maybe there really is nothing that can be done (but this leaves me with no hope).

Toye 2012:364 who is the back expert

Over time patients began to doubt the existence of a ‘back expert’. Having accessed the specialist, patients had expected a definitive diagnosis on the basis of thorough examination and expert opinion, but often got conflicting advice.

Toye 2012:364 you are just a GP – you are not a back expert

Patients described how GPs lacked specialist knowledge that would allow them to effectively treat back pain, and this is why they ‘fobbed you off’.

Toye 2012:365 restoring hope – constructing an acceptable explanatory model

Successful patients had accepted a link between mind and body and embraced psychological interventions. However, physical explanations were still important, and they constructed a new model, which described the body as out of balance rather than broken, thus being able to retain legitimacy in spite of having no medical diagnosis. Unsuccessful patients held onto medical model.

Toye 2012:365 restoring hope – constructing acceptable self-identity

Successful patients felt that they were ‘still me’. They had made some ‘acceptable changes’ to themselves. For example; I need to be strict with myself now, I don’t need to be a perfectionist. They described pacing as a way of gradually increasing activity levels over time, rather than being used to limit activities. Unsuccessful patients described overwhelming loss of self and saw pacing activities as restricting their activities and therefore their lives.

Toye 2012:365 restoring hope – deconstructing fear of specific movements

Described how prior to pain management, fear of moving had made them avoid specific movements. Several factors helped to deconstruct fear: learning that hurt does not mean harm, seeing other patients in the group perform feared movements, performing feared movements themselves, working through flare-ups under supervision of physiotherapist.

Walker 1999:367 being in the system – all in the mind

Absence of proper diagnosis contributed to patients feeling that medical professionals felt that the pain was ‘made-up’. They were often referred onto different physicians.

Walker 1999:367 being in the system – battling for benefits

Forced to stay in benefit system; no perceived advantage of coming out of it, even though they did want to work. This concept underscores the challenges generated by the state.

Walker 1999:367 being in the system – compensation claims

Some patients felt others were at least partly responsible for their back pain problem and that they should be compensated.

Walker 1999:367 being in the system – damned if you do and damned if you don’t

Compensation claims could alienate you from colleagues at work OR force you to seek medical diagnosis and treatment. Negative consequences of applying for compensation and apportioning blame. This describes being alienated because of legal process BUT if you don’t then you won’t get compensation [team note; link to Karl Marx: system covertly suppresses claims for what you deserve].

Walker 1999:367 being in the system – establishing a legitimate claim

Participants describe a struggle to be seen as ‘genuine’ benefit applicants. Living with back pain and living with disability benefit reflects the battles to prove disability

Walker 1999:367 being in the system – feeling insignificant

Communication with health-care professionals not based on relationship between two equals. Professional language often alienated the patient and inhibited good communication. Feel like you have not been understood as a person. Failure of medical professionals to ‘believe’ them, this being compounded by nothing appearing on X-rays, and patients being seen by different professionals in ‘parts’ and never holistically.

Walker 1999:367 being in the system – getting nowhere

Attempts to understand, diagnose and treat pain unfulfilled – feel thwarted.

Walker 1999:367 being in the system – losing faith

Felt health-care professionals had given up on finding a diagnosis and cure, and blamed the patient for their own condition. Patients lost faith in doctors who did not understand their world.

Walker 1999:367 being in the system – passing the medical test

Need to prove that there is significant disability to enable the claim to be processed. Physician bias and ‘malingerophobia’, compounded by the patient’s own determination to lead a ‘normal’ life. This can contribute to patients failing their physical examination and impact their being unable to receive compensation and benefits. [test – powerful of language TEST]

Walker 1999:367 being in the system – the medical process

Medical system consuming their lives but is failing them.

Walker 1999:367 being in the system – waiting

Feeling like a ‘shuttlecock’ long periods of waiting and being sent back and forth for non-productive treatments. All patients felt too much time wasted waiting in vain for ‘productive’ assistance in the medical system.

Walker 1999:367 being in the system – your life is not your own

Deservingness of benefits payment out of the hands of patients, resting solely on the opinion of medical professionals/benefits officers.

Walker 2006:368 loss – employment

Sense of loss related to work exacerbated by lack of understanding from employers, particularly if employment had been longstanding. Felt a sense of betrayal by employer as pressure felt to leave work. Feel like they are treated ‘just like a number’ even when work had been valued prior to pain. Patients went to great lengths to find employment and often hid back pain from their employers (e.g. by taking holiday instead of sick leave). Guilt and resentment at losing/not finding suitable employment.

Walker 2006:368 loss – financial

‘Descent into poverty and social dislocation’; Changes in accustomed lifestyle as a result of financial loss. Inability to support family led to feeling guilty. Difficulty accessing statutory financial support related to invisibility of pain. Lack of economic dissatisfaction appeared linked to age (pension aged people did not necessarily feel the loss).

Walker 2006:368 loss – ability and role

Physical and mental effects of pain (e.g. lack of concentration) prevented patients from performing every day and valued activities. Unable to maintain employment or valued family activities. Interfere with valued life plans. Came to rely on important others (loss of reciprocity). Become ‘socially and environmentally restricted’. Acceptance or rejection of these limitations appears linked to age related expectations.

Walker 2006:368 loss – hope

Turmoil, chaos, turbulence. Patient wrestles powerful emotions of uncertainty about the future, fears of potential worsening of illness, and feelings of vulnerability and helplessness. Inability to make plans; need to live each day as it comes; not knowing what the future holds; fear of getting worse. Like Arthur Frank’s389 CHAOS narrative – ‘being shipwrecked by the storm of disease’ (p. 54). Describe life as imprisoned by pain with no knowledge of release.

Walker 2006:368 loss – identity

Patients distinguished private and public self. Agonised over what people thought and feared being seen as a ‘faker’. I am no longer who I was and I don’t like what I have become. At the same time, I am still the same person but others can no longer see it. This is exacerbated by reactions of others (e.g. why isn’t he giving up his seat?!) [Paradox: I am no longer the same person – I am still the same person]: private/public; old me/new me; fake/real. Gender expectations of behaviour exacerbate this dilemma.

Walker 2006:368 loss – relationships

Irritability, need to be alone, loss of trust and disbelief, lead to breakdown of physical and emotional relationship with partners. Also became isolated from friends and work. Came to know who to trust and who true friends were. For older people, dependence could sometimes increase contact with the family [doesn’t talk about the quality of this contact]

Werner 2003:369 applying the competence – encountering others

With renewed self-esteem following the programme patients were less reactive to and concerned about what others felt about their chronic pain, and less preoccupied with gaining approval.

Werner 2003:369 why can’t she just do it? – family

Negative reactions from husbands or others who could become annoyed or angry. They still expected them to be in charge of household tasks/usual roles. This made it more difficult for the participants to make use of the competence acquired from the treatment programme.

Werner 2003:369 applying the competence – focusing on resources (not pain)

Learnt to be less focused on pain and more on personal resources and enhancement i.e. what can I actually DO rather than how do I FEEL; simply to ‘treat’ oneself or enjoy a pleasurable activity and mobility; making adjustments to amount of tasks to be undertaken in relation to bodily capacity and letting others know about this work capacity.

Werner 2003:369 why can’t she just do it? – friends

Well-intended advice from friends could also make it more difficult to apply the treatment benefit. The women often felt they were given advice as an accusation for not having been clever enough or working sufficiently hard to become healthy. Friendships could break down.

Werner 2003:369 why can’t she just do it? – health-care professionals

Health-care providers were mentioned as a cause of obstruction, by obstructing women’s desired treatment/not referring to specialist.

Werner 2003:369 applying the competence – informing others

Women now let others know of their limitations and capabilities. Being outspoken about personal needs and desires was said to be a constantly on-going internal and external process of work.

Werner 2003:369 for better or worse – awareness of needs

Responding to bodies fluctuating needs. Become more aware of signals of bodies needs and able to act upon them. More competent to allocate capacity in response to limitations. Yet within this dynamic is the constancy of pain that forces the patient to accept (however reluctantly) and readjust to bodily limitations.

Werner 2003:369 applying the competence – knowing my body

I now know the capacity and limitations of my body and am prepared to respect it; I now have permission to adapt to capacity.

Werner 2003:369 for better or worse – recognition gives strength

Recognition and respect demonstrated within groups strengthened participants’ self-confidence and self-esteem while diminishing feelings of guilt for not being restored to full health. The participants described the strength, confidence, and awareness gained from the treatment programme as being useful bodily and emotionally, and gave social competence outside the group context.

Werner 2003:369 for better or worse – sorrow at loss

a. Negative effects due to the increased level of awareness which leads to sorrow at loss of aspects of self. An increased feeling of despair is caused by having to realise that you might never be restored to your former healthy state. Sorrow and bitterness at having to revise the picture of self.

b. Feelings of loss at the cessation of the group treatment therapy and its emotional support and reinforcement that they had experienced.

Werner 2003:369 applying the competence – thinking of me

Learnt to think about myself and the things I can do for me.

Werner 2003:370 I don’t give up unless I have to

Women encountered significant difficulty in being accepted as credible patients by the benefits and medical systems, partners and friends. They dealt with these barriers mainly by persevering, being assertive, and not giving up. Felt ‘tested’ for mental disorder. Worked hard to ‘past test’.

Werner 2003:370 I feel I should look groggy

Have to negotiate their appearance (healthy, pretty, and smartly dressed) in encounters with health-care professionals as this impacted on whether or not these professionals would believe their stories of pain. Have to strike a balance between appearing too healthy/not too healthy. If you look too good or bad people won’t believe you.

Werner 2003:370 you have to tread rather softly

Women reported simply ‘accepting’ in silence the negative treatment meted out by social services and health-care professionals. They either chose to terminate the relationship or to allow someone else to present their arguments so that these professionals were not antagonised.

Werner 2004:371 I have always been so strong

I have always been physically strong but pain has made me physically weak. I have always been emotionally strong but there are times that pain is so bad that it has made me emotionally weak. Paradox – I am still a strong person. I have not chosen this. It is not my fault.

Werner 2004:371 some people pour out their troubles

Narrative of strength. Important to be strong and fighter not weak and complaining. On the one hand I am like those other women (because I have pain) but I am different (not one of those whiners). I am strong, I have a positive attitude, I don’t whine, I am never sick; I don’t go to the doctors. Women work to appear credible and distance themselves from ‘the others’. I am not to blame.