Consumer health organisations for chronic conditions: why do some people access them and others don't?

Background: Consumer health organisations (CHOs), which operate outside the mainstream healthcare system with a specific focus on supporting people to self-manage their health conditions, have become widespread. Yet, there has been little systematic research into CHOs, including their perceived benefits and barriers, which encourage or deter their access by people with a variety of chronic health conditions. Aim: This study explored the benefits of CHOs in self-management and also the barriers that inhibit their access, from the perspective of people with chronic conditions and their unpaid carers. Methods: In-depth, semi-structured interviews were completed with 97 participants across four regions of Australia. The sample included a high representation of people from culturally and linguistically diverse backgrounds and Aboriginal and Torres Strait Islander people as well as non-indigenous Australians. Findings: Three inter-related themes were identified that represented the benefits of involvement and participation in CHOs: knowledge and information, connection and support and experiential learning. However, limited access pathways emerged as a barrier that inhibited a person's entry into CHOs. Furthermore, the person's beliefs and experiences about their own health condition(s) also inhibited their continued participation in CHO programmes. Conclusion: Although our findings confirm that CHOs are a valuable resource in alleviating the 'work of being a patient' for some people, there seems to be some barriers that prevent their full access and utilisation. Structured integration systems to increase the reliable delivery and accessibility of CHOs are needed to ensure that people who would benefit from accessing them can do so.