Attitudes and Beliefs Regarding Pain and Discrimination Among Black Adults with Sickle Cell Disease: A Mixed Methods Evaluation of an Adapted Chronic Pain Intervention.

PURPOSE

This study sought to adapt a chronic pain group curriculum for adults with sickle cell disease (SCD). Given the association of experiences of racism and discrimination with health outcomes, this study also explored how such experiences for patients with SCD impact their interactions with clinicians and health-care systems.

PATIENTS AND METHODS

This mixed methods study recruited patients (aged ≥18 years) in a sickle cell treatment program; all self-identified as Black or African American. Key informant interviews evaluated a chronic pain program curriculum and rated the curriculum sessions' importance for SCD pain management. A survey containing six validated instruments then measured experiences of pain and discrimination, level of emotional expressivity, and trust in physicians and health insurers.

RESULTS

Of the 19 adult patients approached, 12 (63%) completed the interview and survey. Interview data analysis resulted in five themes comprising pain, treatment, mental/emotional, health-care clinicians, and differences in SCD versus other chronic conditions. Each curriculum session was rated as "very important" or "important" by participants. Most described at least one experience of racism or discrimination in the medical setting and identified clinicians' lack of knowledge as a barrier to appropriate SCD care. Participants identified the importance of non-pharmacological treatments for SCD pain and appropriately managing pain caused by comorbid chronic conditions. Conversely, survey responses reported moderate levels of pain, infrequent discriminatory experiences in the medical setting, and moderate trust in medical professionals, whereas most reported experiences of discrimination in general settings. Many participants reported they either accepted it or did nothing in response to discriminatory experiences.

CONCLUSION

Study findings emphasize the need to address experiences of racism and stigma in addition to experiences of emotional and physical pain among patients with SCD in the context of pain management. Findings from this study will inform the development of a SCD pain group curriculum for adult patients.