A Clinician’s Experience in Initiation and Navigation of a Support Group for Sickle Cell Disease Patients – Can We Break Patient Bias?

Abstract Title

A Clinician’s Experience in Initiation and Navigation of a Support group for Sickle Cell Disease Patients – Can we Break Patient Bias?

Introduction:

A 2010 qualitative research study by the Journal of the Health Care for the Underserved validates the finding that African Americans are suspicious of health care programs that are targeted specifically for African American as they believe that the system would have ill-intent. This adversarial relation with health care providers persists in the aftermath of the Tuskegee experiment and other historical research abuses. This is particularly relevant to sickle cell disease (SCD) as it affects minorities, especially the black population. SCD is one of the most common genetic disorders in the nation affecting approximately 100,000 Americans. 1 in 365 African American and 1 in 16,300 Hispanic American are affected by SCD. Chronic pain with frequent episodes of vasoocclusive or pain crises (VOC) are defining clinical features of the disease. Opioids are required during VOC for effective treatment and often is a source of difficulty for patients negotiating the health care system. Over time, SCD can cause multiple organ complications including strokes, cardiopulmonary disease, renal disease and neurocognitive deficits. The disease is associated with a decreased life expectancy.

Methods

Case vignettes of real-life experiences of adult patient with SCD were used to highlight the basis of suspicion of health care providers and health care systems. 25 adult patients aged > 18years old were allowed to express their concern with joining and attending a monthly support group by questionnaire. We captured the various narratives, sought to address their concern through individualized in person dialogue with the social worker, and then invited them again to attend.

Results:

There were several reasons presented by patients for their reluctant to attend the support group sessions. These included difficulty with transportation, competing demands such as need to provide for family, lack of child care, educational level and ability to comprehend in a group environment, hospitalizations, frequent overwhelmingly concerns over privacy and confidentiality including use of photographs for media event by the hospital. After social work provider intervention including providing taxi vouchers, 80% of patients could be convinced to attend their first monthly group sessions. Retention rates of approximately 90% were achieved though we did note that participation was influenced by weather and competing domestic events.

Conclusions: Our study highlights the difficulty SCD patients had with trusting health care providers including social workers. However, the majority of patients could be convinced to attend support groups sessions by acknowledging and addressing their concerns. The study highlighted the various challenges patient had negotiating health care systems; and we highlight the difficulties surrounding trust of providers. However, we demonstrated feasibility in achieving the goals by addressing their legitimate concern.

Printed Program Description:

This program will explore historical practices that influence minority patient’s engagement in groups and research and discuss best practices on how to address this.

References

Scharff, Darcell P., et al. “More than Tuskegee: Understanding Mistrust about Research Participation.” Journal of Health Care for the Poor and Underserved, vol. 21, no. 3, 2010, pp. 879–897., doi:10.1353/hpu.0.0323.

Nguyen, Bich-May. “The Most Shocking and Inhuman.” Family Medicine, vol. 51, no. 1, 2019, pp. 5–7., doi:10.22454/fammed.2019.175092.

Singhal, Astha, et al. “Racial-Ethnic Disparities in Opioid Prescriptions at Emergency Department Visits for Conditions Commonly Associated with Prescription Drug Abuse.” Plos One, vol. 11, no. 8, 2016, doi:10.1371/journal.pone.0159224.

Cohen, Rachel D. “Distrust Of Health Care System May Keep Black Men Away From Prostate Cancer Research.” NPR, NPR, 17 Oct. 2018, www.npr.org/sections/health-shots/2018/10/17/658101432/distrust-of-health-care-system-may-keep-black-men-away-from-prostate-cancer-rese.

Center for Disease Control and Prevention. (2019) Sickle Cell Disease (SCD) [online]. Available at: https://www.cdc.gov/ncbddd/sicklecell/data.html (Accessed: 8/29/2019).