'The white blood cell always eat the red': how Jamaicans with sickle cell disease understand their illness.

OBJECTIVE

To explore lay understandings of sickle cell disease (SCD) among Jamaicans living with the illness. There is no qualitative research on this subject in Jamaica, where SCD is the most common genetic disorder.

DESIGN

Thirty in-depth semi-structured interviews (50% males, 50% urban residence) were conducted with adult patients attending the Sickle Cell Unit in Jamaica. Transcribed data were analysed using thematic analysis.

RESULTS

Patients' narratives focused on two main themes: lay understandings of how SCD works (using ideas of attack and fortification, and blockage and flow); and what causes the illness (lay ideas of inheritance). The most common description of SCD was that their white blood cells were 'eating/sucking out/feeding on' their red blood cells. Hence, treatment required 'building up' their blood, while a key to good health was ensuring an unimpeded flow of blood. Most participants believed SCD was hereditary, but there were various understandings of the mechanism and probability of its transmission. Belief in the possibility of transmitting SCD was not always a barrier to reproduction, nor did participants always insist on their partner or child being tested.

CONCLUSIONS

Participants engaged in medical pluralism, a dynamic combination of folk and biomedical beliefs. Their concerns, experiences and interpretations were powerful motivators of reproductive and screening behaviour. Their narratives of SCD transcend the individual to express social, societal and cultural realities. Health care professionals and policy-makers should communicate clearly to ensure understanding, and recognize and engage with their patients' sociocultural context.