Who is ‘in’ and who is ‘out’? Participation of older persons in health research and the interplay between capital, habitus and field

Inclusion and exclusion processes in community engagement do not take place in a vacuum, but are embedded in social, political and institutional contexts. To better capture the interplay between the individual agency of community participants and organizational structures in health research, we use a Bourdieusian framework. The notions of capital, habitus and field allow us to analyse how inclusion and exclusion of older persons in a Dutch healthcare research- and improvement programme are processually shaped overtime. The findings demonstrate that due to the influence of the medical and policy field, older persons with social, cultural and symbolic capital were included in target group panels. Frail older persons lacking these types of capital were often excluded. Despite the high amount of capital, the formally ‘included’ participants still experienced difficulties in engaging effectively in a medical research setting. We distinguish various strategies that older persons developed during the course of the programme to deal with this problem: (1) professionalization, (2) responsibilization, (3) pluralization, (4) opting out. Using these strategies older participants were able to incrementally change the medical field by shifting the focus to quality of life and welfare. We conclude that it is by definition impossible to ‘exclude exclusion’ at the start of care improvement programmes. It is only in the many pragmatic and mundane choices of ‘doing participation’ that more inclusive engagement can be realized.

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