The advocacy effect: a grounded theory study on the inclusion of caregivers or nearest support persons in research to better understand patient outcomes in rheumatoid arthritis.

OBJECTIVE

To apply grounded theory to generate a substantive theory that explains the roles adopted by caregivers or nearest support persons (CoNSP) and their added value when included as patient advocates in long-term outcomes research in rheumatoid arthritis (RA).

METHODS

A cross-national and multi-language qualitative research study, part of an ongoing project by the Outcome Measures in Rheumatology. The data collection was carried out from March 2018 to February 2019. Initially, four participants from the United States were selected. However, after examining the data we realized that adding the CoNSP as patient advocates might be useful to gain a wider understanding. Therefore, participants were contacted again and asked if they could identify a CoNSP to participate in the study. In addition, participants from Spain and Italy with their CoNSP were included. A total of 16 interviews were conducted (eight pairs composed of a person with RA and his/her CoNSP). To generate theory, the Glaser and Straus grounded theory approach was applied.

RESULTS

We developed The Advocacy Effect Theory which is formed by the core category Vision which is a three-dimensional category: (i) Sharing the same viewpoint - people with RA and their CoNSP share the same viewpoint on the issues addressed, (ii) Expanding the viewpoint - people with RA and their CoNSP contributed information about the same issues, but the CoNSP provided more detailed insights on some of the topics previously shared by the person with RA, and (iii) A new viewpoint - the CoNSP provide original information about issues or topics that were not previously informed by the person with RA. This theory explains the roles of CoNSP and their added value when included as patient advocates in long-term outcomes research in RA.

CONCLUSIONS

The Advocacy Effect Theory showed that CoNSP should be included in outcomes research as patient advocates. Their knowledge and contributions are dynamic, adding value by providing access to data that might not otherwise be accessible.