Being believed and beleiving in: the impact of delegitimation on person centred care for people with chronic back pain

Chronic back pain is an under researched area; the complexities of unseen pain in particular, present challenges to the sociological assumptions made about the concept of ‘sickness’. The lack of ‘visible’ signs and symptoms means that some people are left without a diagnosis. If left undiagnosed, their experience of chronic back pain becomes delegitimized and could result in the erosion of self-esteem, self-identity and personhood. Undiagnosed chronic back pain can undermine a person’s moral self through disrupting the person’s biography and self –esteem. Ultimately, people with chronic back pain need person centred approaches to care that support the restoration of the self. The aims of this study were to generate a theory of person-centred care predicated on the experiences of people who have chronic back pain. The research design was influenced by a constructivist paradigm, which underpinned a Grounded Theory methodological approach. A purposive sampling strategy identified 17 people with chronic back pain and 4 multi-professional teams who were involved in their care. Semi-structured interviews with people who have chronic back pain, and the multi-professional teams captured the experience of person-centred care and explicated meaning about its key concepts. Data were analysed using a constant comparative approach through which theoretical sensitivity developed and eleven categories emerged. The ‘conditional partnership’ became a core category, which formed a substantive theory to explain the experience of person-centred care. The key findings highlight the significance of legitimation on the chronic back pain experience and exposes the impact that ‘delegitimation’ has on the individual’s ability to mobilise resources and manage their pain effectively. This thesis presents the conditional partnership as a theory which explains the relationship needed to support person centred care. The theory suggests that person centred care for people with chronic back pain is underpinned by a conditional partnership which is made up of three conditions; being believed, believing in and non-maleficence which represent the expected conditions of health care and by health care