Consumer health organisations for people with diabetes and arthritis: who contacts them and why?

Abstract

As health systems worldwide confront a growing prevalence of chronic disease, attention has focused on self-management as a strategy for delivering better outcomes for individuals and the health system. Consumer health organisations (CHOs) offer an existing, but under-utilised, resource for supporting self-management. This paper reports on a study designed to investigate the use of CHOs among people with diabetes and arthritis. A cross-sectional computer-assisted telephone interview survey was completed by 279 people who had made contact with one of four CHOs in Queensland, Australia, between July and August 2006. Self-reported data were collected on the participants' socio-demographic and health-related characteristics, pathways to, use and benefits of CHO contact and subsequent health actions. People contacted CHOs primarily to obtain further information about their condition or to access services or products. Most believed CHOs offered useful information relevant to their health and better ways to manage health problems. Almost half reported that they had started exercising or changed diet following contact. More than two-thirds of diabetes contacts had been directed to the organisation by a health professional, compared with less than one-third of those with arthritis. Correspondingly, people with diabetes reported shorter periods between diagnosis and contact and more prior contact with the organisation and were less likely to wish they had made contact earlier. The study concludes that people who contact CHOs report benefits and health actions conducive to better self-management. The integration of CHOs within the wider health system, as in the case of the diabetes CHO in this study, is likely to facilitate contact. Further attention to the role of these organisations as part of a comprehensive approach to chronic illness care is warranted.

‘You say treatment, I say hard work’: treatment burden among people with chronic illness and their carers in Australia

“…By participating in such organisations, patients may be able to create avenues for experiential learning and a sense of belonging and opportunities for social engagement, which may be difficult to obtain from a healthcare professional (Boyle et al . , Sav et al . ).…”

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

“…This calls for a greater emphasis on informal healthcare services to provide people the necessary resources to effectively self-manage their chronic conditions. Greater integration of CHOs is also necessary in the context of current health system constraints (Boyle et al, 2009). Our findings suggest that for most participants, accessing CHOs provide knowledge and information about their condition(s), various treatment options, support and encouragement for healthy lifestyle changes, and a sense of connection and experiential learning that they find empowering.…”

“…The findings of this study reinforce the notion that CHOs have a complementary role and make a valuable contribution in alleviating the hard work associated with self-managing chronic conditions. Primary healthcare systems may not provide consumers with adequate access to the non-clinical and psychosocial aspects of care (eg, experiential knowledge) that they need in order to effectively self-manage their ongoing health conditions (Boyle et al, 2009). For most participants we interviewed, the resources offered by CHOs were fundamental in enhancing the capacity of people to effectively engage in selfmanagement of their chronic health conditions.…”

“…Few studies have focused on the perceived benefits of CHOs from the perspectives of consumers with a variety of ongoing health conditions (eg, Kyrouz et al, 2002;Coppa and Boyle, 2003;Boyle et al, 2009;Hoffmann and O'shea, 2012). Few studies have focused on the perceived benefits of CHOs from the perspectives of consumers with a variety of ongoing health conditions (eg, Kyrouz et al, 2002;Coppa and Boyle, 2003;Boyle et al, 2009;Hoffmann and O'shea, 2012).…”

Exploring the understanding of evidence-based concepts in people with type 2 diabetes

“…Diabetes organizations, including consumer health organizations, have become leaders in providing information to people with diabetes to the extent that health professionals refer more often to diabetes consumer health organizations than to other chronic disease consumer health organizations,9 and individuals with diabetes report turning to such organizations to fill their knowledge gaps 8…”