ABSTRACT

This chapter focuses on participant selection in research, in particular the involvement of older adults with communication challenges. With the ageing of the population and the increased prevalence of chronic health conditions such as stroke and dementia, a significant number of older individuals are left with difficulties that impair their ability to communicate or to engage in conversations. This has a profound impact on how researchers include them in research. Indeed, limited communication poses challenges not only for obtaining informed consent but also for engagement in surveys, interviews, focus groups or even in responding to surveys. The exclusion of this group of older adults has a wide impact because policymakers are relying on studies from which the most affected individuals have either been excluded or not properly included. In the chapter, the authors explore the ethico-legal and practical challenges facing researchers who consider the inclusion of this group of older adults in their protocols. A number of best practices are offered to researchers, institutional review boards and granting agencies with the aim of better responding to the need for increased participation while ensuring protection from harm and exploitation.