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

Sav, Adem, McMillan, Sara S., Kelly, Fiona, Whitty, Jennifer A., Kendall, Elizabeth, King, Michelle A. and Wheeler, Amanda J. (2014) Consumer health organisations for chronic conditions: why do some people access them and others don't?. Primary Health Care Research and Development, 15 4: 418-429. doi:10.1017/S1463423614000036


Author Sav, Adem
McMillan, Sara S.
Kelly, Fiona
Whitty, Jennifer A.
Kendall, Elizabeth
King, Michelle A.
Wheeler, Amanda J.
Title Consumer health organisations for chronic conditions: why do some people access them and others don't?
Journal name Primary Health Care Research and Development   Check publisher's open access policy
ISSN 1463-4236
1477-1128
Publication date 2014-10-01
Year available 2014
Sub-type Article (original research)
DOI 10.1017/S1463423614000036
Open Access Status Not yet assessed
Volume 15
Issue 4
Start page 418
End page 429
Total pages 12
Place of publication Cambridge, United Kingdom
Publisher Cambridge University Press
Language eng
Formatted abstract
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.
Keyword Benefits and barriers
Chronic illness
Consumer health organisation
Self-management
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status Non-UQ

Document type: Journal Article
Sub-type: Article (original research)
Collection: School of Pharmacy Publications
 
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