Exploring the similarities and differences of the perceptions of participation in clinical research in the East African community in King County, Washington.

Abstract

Exploring the similarities and differences of the perceptions of participation in clinical research in the East African community in King County, Washington. Purpose/Background: Recent research at Seattle Children’s Hospital by O’Connor (2013) estimates that the prevalence rates of Type 1 diabetes (T1D) are nearly four times higher in East African immigrant youth who receive care at Seattle Children’s Hospital compared to non- immigrant black youth in King County. Most health care providers and clinicians believe the scarcity of available data about African migrants’ health is the real health barrier faced by these populations (Homer et al, 2007). Furthermore, African migrants including East African communities have lower rates of clinical research participation (O’Connor, 2013) East African communities in King County comprise people from diverse origins. While they share some things in common, combining them into one group may be too overreaching and may ignore important nuances that differentially impact participation in clinical research. This study explored the differences and similarities in perceptions towards clinical research and Type1diabetes (T1D) both barriers and motivators in these communities relating themes culture, religion and trust. Methods: Given the limited data available to guide researchers in recruitment of East African communities in clinical research, we used key informant interviews and focus group discussions. Key informant participants were defined and identified as individuals with considerable experience and expertise in navigating the U.S. healthcare system. Purposeful sampling was used to recruit the focus group participants, because of the common characteristics shared by this population (Sandelowski, 1995). Semi-structured interviews were led by a Somali researcher and observed by a non-community researcher. The two researchers who were present during key informant interviews and focus group discussions also conducted the analysis. Transcripts were coded separately by both researchers using Atlas.ti v.7 to organize the data. Results: The data revealed 3 themes related to barriers and 2 themes related to motivators to clinical participation among these three East African communities living in Seattle and King County. Barriers identified by participants feel into three themes: Cultural, Religion and Trust. Conclusions: Findings of this study suggest East African communities in King County, Washington have more commonalities than differences relating to perceived barriers and motivators to participating clinical research. There was agreement across the three communities that culture, religion and trust impact their participation in and perceptions of clinical research, yet they differed in their beliefs about how barriers evolved. They all agree educating their community about the benefits of clinical research and future opportunities to participate in clinical research will lessen doubts about clinical research amongst East Africans.