Abstract
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.
| Original language | English |
|---|---|
| Pages (from-to) | 281-293 |
| Number of pages | 13 |
| Journal | Critical Public Health |
| Volume | 28 |
| Issue number | 3 |
| DOIs | |
| Publication status | Published - 27 May 2018 |
Bibliographical note
Funding Information:This work was supported by the Netherlands Organisation for Health Research and Development [grant number 633300004].
Funding Information:
Our analysis is based on qualitative research of the National Program of Elderly Care (NPEC) that took place between 2008 and 2016. With a total budget of over 80 million euros, it was one of the largest care improvement programmes in the Netherlands. The NPEC is funded through the Ministry of Health, Welfare and Sports, who commissioned the Netherlands Organisation for Health Research and Development (a large funding body for health research and innovation) to further develop and monitor the programme. In the development of the programme, a national programme committee – responsible for the operational governance – was established by the funding body. Members of this committee had a high public profile and were viewed as experts in research, policy and healthcare.
Publisher Copyright:
© 2018 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
Research programs
- EMC NIHES-05-63-02 Quality
