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

Omfattende studie om kronisk smerte som kommer med reelle tiltak for å bedre tilstanden hos pasientene. Nevner spesielt en at en holdningsendring må skje hos legene og sykepleierene hvor man inkluderer pasientes subjektive opplevelse. Nevner grunnlaget for dagens medisin og objektifisering av pasienten: «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’  »

http://www.journalslibrary.nihr.ac.uk/__data/assets/pdf_file/0010/94285/FullReport-hsdr01120.pdf

Conclusion: Our model helps us to understand the experience of people with chronic MSK pain as a constant adversarial struggle. This may distinguish it from other types of pain. This study opens up possibilities for therapies that aim to help a person to move forward alongside pain. Our findings call on us to challenge some of the cultural notions about illness, in particular the expectation of achieving a diagnosis and cure. Cultural expectations are deep-rooted and can deeply affect the experience of pain. We therefore should incorporate cultural categories into our understanding of pain. Not feeling believed can have an impact on a person’s participation in everyday life. The qualitative studies in this meta-ethnography revealed that people with chronic MSK pain still do not feel believed. This has clear implications for clinical practice. Our model suggests that central to the relationship between patient and practitioner is the recognition of the patient as a person whose life has been deeply changed by pain. Listening to a person’s narratives can help us to understand the impact of pain. Our model suggests that feeling valued is not simply an adjunct to the therapy, but central to it. Further conceptual syntheses would help us make qualitative research accessible to a wider relevant audience. Further primary qualitative research focusing on reconciling acceptance with moving forward with pain might help us to further understand the experience of pain. Our study highlights the need for research to explore educational strategies aimed at improving patients’ and clinicians’ experience of care. 

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. 

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.

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

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

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

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.

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