Primary Health Care Research & Development

Research

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

Adem Sava1 c1, Sara S. McMillana2, Fiona Kellya3, Jennifer A. Whittya4, Elizabeth Kendalla5, Michelle A. Kinga6 and Amanda J. Wheelera7

a1 Senior Research Assistant (PhD), Population and Social Health Research Program, Griffith Health Institute, Griffith University, Meadowbrook, QLD, Australia

a2 PhD Candidate, Population and Social Health Research Program, Griffith Health Institute, Griffith University, Meadowbrook, QLD, Australia

a3 Adjunct Research Fellow (PhD), School of Human Services and Social Work, Griffith Health Institute, Griffith University, Meadowbrook, QLD, Australia

a4 Senior Lecturer (PhD), Centre for Applied Health Economics, Griffith Health Institute, Griffith University, Australia

a5 Professor, Director of Research (PhD), Population and Social Health Research Program, Griffith Health Institute, Griffith University, Meadowbrook, QLD, Australia

a6 Senior Lecturer (PhD), School of Pharmacy, Griffith Health Institute, Griffith University, Gold Coast, QLD, Australia

a7 Professor (PhD), Population and Social Health Research Program, Griffith Health Institute, Meadowbrook, QLD, Griffith University, Australia

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.

(Received March 10 2013)

(Revised August 14 2013)

(Accepted January 05 2014)

(Online publication February 05 2014)

Key words

  • benefits and barriers;
  • chronic illness;
  • consumer health organisation;
  • self-management

Correspondence

c1 Correspondence to: Adem Sav, Population and Social Health Research Program, Griffith Health Institute, Room 2.16, Building L08, Griffith University, University Drive, Meadowbrook 4131, Australia. Email: a.sav@griffith.edu.au

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