Enhancing consumer participation in a medically supervised injecting centre through participatory action research

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Consumer participation in health care refers to consumer involvement in decisions regarding the planning, delivery and evaluation of services. Consumer participation has been occurring in drug treatment services for over a decade, but progress has been slow due to poor organisational commitment, negative attitudes and power imbalances between consumers and providers. There are no reported consumer participation studies in harm reduction settings. This study investigated how the process of forming a consumer action group (CAG) influenced consumer participation at the Uniting Sydney Medically Supervised Injecting Centre (MSIC), a service designed to reduce the negative impacts of injecting drug use. The aim of this study was to investigate how the process of forming a consumer group influenced consumer participation at MSIC. A participatory action research method was employed. The first stage investigated current levels of consumer participation at MSIC and motivation to form a CAG. Data for this stage included a consumer satisfaction survey (n=100), a staff brainstorming exercise (n=36) and structured interviews with consumers (n=12) and providers (n=7). In the second stage, MSIC consumers (n=11) and staff (n=5) developed a CAG. The third stage involved the implementation of the CAG’s goals to enhance consumer participation. The fourth stage comprised an evaluation using a consumer satisfaction survey (n=100) and structured interviews with CAG members (n=13) and MSIC staff (n=10), and the process of the author’s withdrawal from the study. There were considerable challenges in establishing a CAG. These included: consumers’ marginalised lifestyles, MSIC’s biomedical model and negative attitudes of staff. Despite these constraints, there was active interest in developing the CAG. The group successfully implemented strategies to enhance MSIC’s consumer participation. The consumer CAG members reported that the group helped them to improve their relationships with each other and staff, reduce drug use, address health problems and consider employment in the drug treatment services. A key factor that facilitated the group’s success was the support the consumer members received from MSIC staff. In line with previous research findings from drug treatment services, this study revealed that consumers’ drug use and lifestyles can constrain consumer participation. However, the results also demonstrated that these factors were mediated by the staff’s efforts to focus on the consumers’ strengths. Participation not only empowered consumers, but also increased their social capital and prompted them to make positive lifestyle changes. Overall, this study provides evidence that highly marginalised consumers can successfully contribute to service delivery when a strength-based approach is adopted.
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