Involving HIV-positive people in policy and service development: Recent experiences in England

Abstract

Although the ‘Greater Involvement of People Living with or Affected by HIV/AIDS’ (GIPA) principle was first articulated over a decade ago (UNAIDS, 1999), relatively few studies have examined the extent to which it is being implemented. A study was undertaken in three areas of England to establish the types of user involvement mechanisms in place for HIV-positive people to influence service and policy development. Drawing on group discussions with 38 people living with HIV and six HIV professionals across the three geographical research sites, as well as interviews with eight professionals with expertise in this area, this paper illustrates variability in opportunities for involvement. Also identified are a range of (innovative) methods for facilitating HIV-positive people's greater participation in service planning and delivery, as well as some of the challenges encountered by people living with HIV and service providers when implementing GIPA. The paper concludes by identifying some specific strategies for improving user involvement in HIV service provision.

Acknowledgements

This study was funded by the National AIDS Trust. The views expressed are the authors’ alone. We would like to thank the professionals who agreed to take part in the study, especially those who helped to facilitate recruitment to the discussion groups, and those people living with HIV who shared their views and ideas.