Unfolding portraits of pain: a longitudinal interpretative phenomenological analysis of chronic pain sufferers’ self-management journeys as recounted through interviews and drawings of pain and self

Chronic pain is a common, profoundly disabling and complex condition whose effects on identity may hold a key to understanding the extreme distress experienced by sufferers. To help patients adapt to a life with pain, the English National Health Service has established chronic pain services which also offer multidisciplinary Pain Management Programmes (PMPs). Despite its strong existential impact, chronic pain remains an elusive condition, difficult to describe and to understand. Drawings have successfully been used to complement Interpretative Phenomenological Analysis (IPA) interviews to investigate pain, eliciting vivid representations and rich descriptions. This study explores how the relationship with pain and sense of self of sufferers evolves when they attend a community chronic pain service and participate in a PMP. Participants were eight unemployed English women, aged 40-60.In a longitudinal design, data were gathered at three timepoints: before attending a PMP and one and six months later. To facilitate a deep description of the experience of pain and its effects, interviews were guided by participant-generated drawings of their pain and of themselves. In later interviews participants also reviewed their earlier drawings, leading to interesting reflections. Interviews and drawings were analysed longitudinally using IPA. Different trajectories emerged from the drawings and narratives. Three participants had an upward and positive trajectory: over the course of the study, they were able to regain control over their lives. In contrast, two participants had a negative or unchanging trajectory, remaining locked in static identities with pain that seemed to worsen. Three participants had a positive but complicated trajectory, experiencing disruption but still integrating pain into their lives. Only participants who actively engaged with the chronic pain service experienced a positive change. The results demonstrate the idiosyncratic nature of chronic pain and offer a nuanced account of its links to the lifeworld of sufferers. Results also highlight the value of using IPA in a longitudinal design to understand the temporal evolution of experience and of integrating interview data with drawings of pain and Self to obtain a deeper and richer account of participants’ evolving experience