Vulnerability, Agency, and the Research Encounter: Family Members' Experiences and Perceptions of Participating in an Observational Clinical Study in Kenya

Scholastica M. Zakayo, Mary N. Kimani, Gladys Sanga, Rita Njeru, Anderson Charo, James A. Berkley, Judd L. Walson, Maureen Kelley, Vicki Marsh, Sassy Molyneux

Research output: Contribution to journalArticle

Abstract

Pediatric clinical research in low-resourced countries involves individuals defined as “vulnerable” in research ethics guidance. Insights from research participants can strengthen the design and oversight of studies. We share family members' perspectives and experiences of an observational clinical study conducted in one Kenyan hospital as part of an integrated empirical ethics study. Employing qualitative methods, we explored how research encounters featured in family members' care-seeking journeys. Our data reveals that children's vulnerability is intricately interwoven with that of their families, and that research processes and procedures can inadvertently add to hidden burdens for families. In research, the potential for layered and intersecting situational and structural vulnerability should be considered, and participants' agency in constrained research contexts actively recognized and protected.

Original languageEnglish (US)
JournalJournal of Empirical Research on Human Research Ethics
DOIs
StateAccepted/In press - 2021

Keywords

  • agency
  • childhood acute illness
  • integrated empirical ethics
  • low- and middle-income countries
  • vulnerability

ASJC Scopus subject areas

  • Social Psychology
  • Education
  • Communication

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