How to involve hard to reach groups: a consumer-led project with lay carers of people with advanced HIV infection

The identification and provision of support to lay carers is crucial if Health Authorities are to meet the identified health care needs of their populations. This paper outlines in Part One the process for recruiting a defined but potentially hard to reach group, namely lay carers of people with advanced HIV infection, into a project designed as part of an ongoing development in HIV/AIDS education, the specific difficulties encountered, and how these were overcome. Part Two describes how to make a video, highlighting the involvement of carers in all stages of the research and development of a health education video-based resource package. Crucial to overcoming many of the difficulties and in winning the confidence and trust of the carers was the overview throughout of a committed multi-disciplinary Steering Group, the emphasis on confidentiality, the support of colleagues in the six UK centres, and the sensitivity and skills of the university research and production facilitators. This process ensured that the carers as consumers were involved in a continuing and active dialogue through the project.