Challenges in obtaining informed consent for health research from dependent older persons in the Indian...

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.