Exploring the experience of pain in adults with sickle cell disease

Sickle Cell Disease (SCD) is England’s most common blood disorder whereby sickled shaped red blood cells block small blood vessels causing both acute and chronic pain. Currently there is poor understanding about the experience of SCD pain. Furthermore, there is a recognised difficult relationship between SCD patients and health care professionals (HCP) which has been found to prevent patients seeking medical assistance.
Seven adults with SCD participated in semi-structured interviews regarding their experience of pain and receiving medical treatment. Interviews were transcribed and analysed using Interpretative Phenomenological Analysis (Smith, Flowers & Larkin, 2009). The analysis revealed three overarching themes: experiencing unimaginable pain, the dilemma of treatment and finding a life with pain.
Findings suggest describing SCD pain is extremely difficult, participants favoured using analogies to attempt to communicate the constant, agonising, limitless, inescapable pain. Participants described that normal rules do not apply in that pain medication does not always relieve pain. These factors have caused misunderstanding with staff thinking SCD patients are drug seeking. Participants wanted HCPs to listen to their own expertise when considering treatment options.
Study limitations, implications for clinical practice and current models of health and illness are considered, as well as possible for future research.