Journal of Pediatric Nursing
Volume 42, 2018, Pages 104-110

East African Perceptions of Barriers/Facilitators for Pediatric Clinical Research Participation and Development of the Inclusive Research Model (Article)

O'Connor M.R.* , Adem A. , Starks H.
  • a School of Nursing, University of Washington, Seattle, United States
  • b School of Public Health, University of Washington, Seattle, United States
  • c School of Public Health, University of Washington, Seattle, United States

Abstract

Purpose: This study sought to gain a greater understanding of perceptions related to barriers/facilitators for pediatric (ages 0–17) clinical research participation among East African immigrant community members. Design and Methods: Community leader interviews (n = 6) and focus groups with lay members (n = 16) from the three largest East African communities in the Seattle area (Eritrean, Ethiopian and Somali) were conducted. Discussions were semi-structured based on existing barrier/facilitator research and analyzed using directed content analysis to identify major themes. Results: Analysis revealed two novel barrier sub-themes: inadequate interpretation and translation of information even when services were available and a lack of adequate vocabulary in preferred languages. Participants also confirmed previously identified logistical barriers/facilitators (lack of knowledge regarding clinical research; time, cost, transportation, and child care challenges; providing incentives) and psychosocial barriers/facilitators (mistrust of research; cultural and/or religious differences; connecting benefits to the community; involving religious/community leaders or organizations and including community members on the research team; transparency in the research process; presenting results to the community) for clinical research participation among underrepresented groups. Conclusion: Perceptions of barriers/facilitators for pediatric clinical research participation among East African immigrants identified two novel sub-themes and confirmed those previously described by other underrepresented communities. Practice Implications: To facilitate more inclusive research participation, researchers, nurses and other health care providers might consider ensuring adequate time for discussion of the research study and process, engaging the community in the research process, employing lay reviews of translated materials and/or oral consent processes, and other strategies outlined in the Inclusive Research Model. © 2018 Elsevier Inc.

Author Keywords

East Africa Immigrant Research participation Pediatrics Descriptive qualitative research

Index Keywords

information processing perception communication barrier Communication Barriers immigrant scientist clinical research nurse human Biomedical Research medical research pediatrics organization language procedures qualitative research Vocabulary interview Humans migrant psychology Black person Adolescent African Continental Ancestry Group male Emigrants and Immigrants female Africa leadership clinical article Article content analysis patient selection attitude to health Focus Groups child care Child

Link
https://www.scopus.com/inward/record.uri?eid=2-s2.0-85047079510&doi=10.1016%2fj.pedn.2018.05.005&partnerID=40&md5=507316697cbf29256a795d31dea38a76

DOI: 10.1016/j.pedn.2018.05.005
ISSN: 08825963
Cited by: 1
Original Language: English