How sickle cell disease patients experience, understand and explain their pain: An interpretative phenomenological analysis study

Coleman, B., Ellis-Caird, H., McGowan, J. and Benjamin, M. J. (2016) How sickle cell disease patients experience, understand and explain their pain: An interpretative phenomenological analysis study. British Journal of Health Psychology, 21 (1). pp. 190-203. ISSN 1359-107X.

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Sickle 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.

Qualitative research design.

Seven face-to-face semi-structured interviews were conducted. Interviews were transcribed and analysed using Interpretative Phenomenological Analysis.

Participants 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.

This 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

Item Type: Article
Subjects: R Medicine > RB Pathology > RB0127 Manifestations of disease > RB0127.H355 Pain. Measurement
R Medicine > RC Internal medicine > RC0581 Specialties of internal medicine > RC0633 Diseases of the blood and blood-forming organs
Divisions: Faculty of Social and Applied Sciences > School of Psychology, Politics and Sociology > Salomons Centre for Applied Psychology
Depositing User: Dr John McGowan
Date Deposited: 26 Jan 2016 15:45
Last Modified: 04 Feb 2016 15:36

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Last edited: 29/06/2016 12:23:00