Background: Sudden onset neurological conditions, such as spinal cord injury and stroke, are unexpected, life-changing events. Research suggests that survivors grieve the life they knew, while commonly trying to cope with significant impairments impacting their everyday life. Some impairments are condition specific while others are shared across conditions, such as chronic pain.
Aim: This research portfolio aimed to increase understanding of the experience of chronic pain following two sudden onset neurological conditions, namely spinal cord injury and stroke, in adults.
Design: The portfolio consists of two main research papers, a systematic review which thematically synthesises qualitative findings on adults’ experience of chronic neuropathic pain following spinal cord injury and an interpretative phenomenological analysis (IPA) study which investigates the experience of working age adults living with chronic post-stroke pain. These are presented alongside an introduction, bridging section, extended methodology, and overall discussion.
Findings: The systematic review identified six themes; ‘The pain as an unusual, intense, unpredictable and uncontrollable sensation’, ‘The pain’s influence on life’, ‘Trying to understand the pain’, ‘The challenge of describing the pain to others’, ‘The search for pain relief’ and ‘Learning pain acceptance over time’. The IPA study identified three master themes: ‘The solitude of the pain experience’, ‘Unsatisfactory healthcare and the need for self-care’ and ‘The development of pain acceptance’.
Conclusions: The findings suggest that spinal cord injury and stroke patients have similar experiences of living with chronic pain. The pain is described as an invisible impairment, which is difficult to relate to others and can easily be overlooked in the context of other visible, more prototypical impairments. Primary healthcare settings are described as lacking specialist knowledge, leading to unsatisfactory identification, diagnosis and treatment. Recommendations for clinical applications and future research are provided
