Sav Adem, McMillan Sara S, Kelly Fiona, Whitty Jennifer A, Kendall Elizabeth, King Michelle A, Wheeler Amanda J
Prim Health Care Res Dev. 2014 Oct;15(4):418-29. doi: 10.1017/S1463423614000036.
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.
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.
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.
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.
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.
消费者健康组织（CHOs）在主流医疗体系之外运作，特别专注于支持人们自我管理健康状况，现已广泛存在。然而，对于消费者健康组织，包括其感知到的益处和障碍，很少有系统的研究，这些因素会鼓励或阻碍患有各种慢性健康状况的人加入。
本研究从慢性病患者及其无偿护理者的角度，探讨了消费者健康组织在自我管理方面的益处以及阻碍人们加入的障碍。
对澳大利亚四个地区的97名参与者进行了深入的半结构化访谈。样本中包括了来自文化和语言背景多样的人群、原住民和托雷斯海峡岛民以及非原住民澳大利亚人的高比例代表。
确定了三个相互关联的主题，代表了参与消费者健康组织的益处：知识与信息、联系与支持以及体验式学习。然而，有限的加入途径成为阻碍人们加入消费者健康组织的障碍。此外，个人对自身健康状况的信念和经历也阻碍了他们继续参与消费者健康组织的项目。
尽管我们的研究结果证实，消费者健康组织是减轻一些人“患者负担”的宝贵资源，但似乎存在一些障碍阻碍了其全面的加入和利用。需要建立结构化的整合系统，以提高消费者健康组织服务的可靠提供和可及性，确保能够从加入中受益的人能够这样做。
