How sickle cell disease patients experience, understand and explain their pain: An Interpretative Phenomenological Analysis study

ObjectivesSickle cell disease (SCD) is the UK's most common blood disorder causing sickle shaped red blood cells to block small blood vessels inducing both acute and chronic pain. A crucial factor in determining quality of life for those with SCD is the severity, timing and number of painful sickling episodes. However, little research focuses on the nature of pain and so it is poorly understood. The aim of this study is to provide an in-depth and meaning led account of the experience of SCD pain. DesignQualitative research design. MethodsSeven face-to-face semi-structured interviews were conducted. Interviews were transcribed and analysed using Interpretative Phenomenological Analysis. ResultsParticipants described experiencing unimaginable, agonising, continuous, inescapable and limitless pain which was almost impossible to describe; participants resorted to using analogy and personification as a way to overcome this difficulty. Participants spoke about a process where, ultimately, they felt obliged to accept their illness as it would never be cured; but were able to appreciate life and recognize positive life lessons as a result of living with SCD. ConclusionsThis research indicates that therapeutic work around analogy can help individuals understand and express their pain and that current attempts to measure pain are unhelpful for SCD populations. Further research is needed across a wider SCD population to forward the findings of this qualitative study.