Challenges in obtaining informed consent for health research from dependent older persons in the Indian socio-cultural context.

Abstract

In this brief commentary, we share our experience of obtaining informed consent from older persons living in the community, dependent on their sons, daughters or in-laws. We present a scenario in which for our community-based cluster randomised controlled trial on diabetes peer support groups for diabetes self-management, we attempted to obtain informed consent from an older person living in a dependent state with her daughter. While the older woman herself was interested in participating in the study initially, later she declined to consent, probably influenced by her daughter and son-in-law with whom she was living. In this article, we reflect on this unique social dynamic in India where many older persons are in a dependent relationship with their primary caregivers; and what this relationship means to autonomy in research participation. We propose that engaging with primary care givers of older persons before approaching them for research participation may be a crucial step in this social context.