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

Abstract

Objectives 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. Design Qualitative research design. Methods Seven face-to-face semi-structured interviews were conducted. Interviews were transcribed and analysed using Interpretative Phenomenological Analysis. Results 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. Conclusions 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. Statement of contribution What is already known on this subject? Sickle cell disease (SCD) has an impact on all aspects of a person's life (Edwards et al., 2005, International Journal of Behavioral Medicine, 12, 171). Strickland, Jackson, Gilead, McGuire, and Quarles (2001, Journal of the National Black Nurses' Association, 12, 36) suggest that one of the crucial factors in determining quality of life for those with SCD is the severity, timing and number of painful sickling episodes. Exacerbations of pain are also cited as explanation for the majority of medical contacts for people with SCD (McClish et al., 2009, Pain, 145, 246). The majority of research focuses on the consequences of pain in terms of handicap, and its impact on emotional well-being, relationships and the need for medication/hospital treatment (Booker et al., 2006, Chronic Illness, 2, 39; Weisberg et al., 2013, Journal of Hospital Medicine, 8, 42) rather than how SCD patients experience and understand their pain. However, the actual nature of pain experience in SCD is poorly understood and sub-optimally managed (Booker et al., 2006; Taylor et al., 2010, Journal of Pain and Symptom Management, 40, 416). What does this study add? The experience of SCD pain is indescribable without the use of analogy, as it is unbearable, agonising, constant, inescapable and without limit. Difficulty describing pain creates a perception of being misunderstood or minimized by professionals. Personification of pain is often employed by patients to attempt to form a relationship with pain. Current pain measures used in clinical practice are inadequate at capturing the acute and chronic SCD pain experience.