Okagbare, Fejiro; Swartz, Alison; Padfield, Deborah; Ahmad, Ayesha; (2025) Your pain and mine: the mismatch between pain expression and perception of patients with sickle cell disease in the UK. Medical Humanities 10.1136/medhum-2025-013243. (In press).

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Abstract

BACKGROUND: Transforming the scope of global health to become more equitable, especially in conditions such as sickle cell disease (SCD), has been the subject of increasing attention. It has garnered significant focus within the National Health Service (NHS) due to rising patient concerns about pain undertreatment, institutional racism and the need for culturally competent care. As much of SCD research originates from the USA, a gap exists in understanding the factors influencing pain expression and perception in SCD care in the NHS, especially from the perspectives of clinicians and medical trainees in the UK. METHODS: This study employed virtual semi-structured interviews with clinicians and medical students, through purposive and convenience sampling, to assess individual, social and cultural factors affecting pain perception and assessment in SCD care. The data were analysed using an abductive approach, combining inductive and reflexive thematic analysis with deductive refinement to align emerging themes with the research question. Considerations were made for the ethical framework of this study, including confidentiality and counselling available to participants, as well as for my positionality as a researcher with SCD. RESULTS AND DISCUSSION: Four main themes emerged in exploring factors affecting pain perception in acute care, including (1) Knowledge gaps, (2) Cultural attitudes towards pain tolerance and (3) Biases misidentifying patients with SCD as 'drug seekers'. The fourth and final theme, patient voices in education, proposed as a solution to addressing all of the above, underscores the importance of integrating experiences of patients with SCD into medical training to develop culturally competent care practices for improved pain management. CONCLUSIONS: As someone with lived experience of SCD who has held roles as a researcher and an advocate, this study has made me more driven to put patient voices within published literature because service provision, in any setting, which is not informed by patient experiences, will continue to miss the needs of the users.

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