Developing consumer involvement in rural HIV primary care programmes

As part of a broader medical and psychosocial needs assessment in a rural region of northern California, USA, five focus groups were conducted to explore innovative approaches to creating a system of consumer involvement in the delivery of HIV primary care services in the region.

A total of five focus groups (n = 30) were conducted with clients from three of five counties in the region with the highest number of HIV patients receiving primary care.

Participants were recruited by their HIV case managers. They were adults living with HIV, who were receiving health care, and who resided in a rural mountain region of northern California.

Group discussions explored ideas for new strategies and examined traditional methods of consumer involvement, considering ways they could be adapted for a rural environment.

Recommendations for consumer involvement included a multi-method approach consisting of traditional written surveys, a formal advisory group, and monthly consumer led social support/informal input groups. Specific challenges discussed included winter weather conditions, transportation barriers, physical limitations, confidentiality concerns, and needs for social support and education.

A multiple-method approach would ensure more comprehensive consumer involvement in the programme planning process. It is also evident that methods for incorporating consumer involvement must be adapted to the specific context and circumstances of a given programme.