Conceptualising self-management: patient engagement in the management of their chronic illness

Abstract

The engagement of individuals in self-management of their chronic illnesses has been a policy focus of the Australian federal government and health services for over two decades, seeking to address the prevalence of chronic illnesses and the associated burden on health systems and communities. Governments, health services and community agencies have invested in self-management support initiatives to enhance individuals’ engagement in illness management. Concurrently, research has evaluated the support initiatives, developed theories of self-management, and identified factors that facilitate or hinder engagement. Despite this, a lack of agreement remains on how engagement in self-management is conceptualised, particularly from the view of consumers, and operationalised in practice. There is also a lack of research evaluating the consistency of consumer engagement in self-management beyond limited follow-up periods.

This PhD study analysed data collected as part of a randomised controlled trial of a generic self-management group education program conducted in Sydney, New South Wales, Australia. The PhD study involved 16 participants with various chronic illnesses. A modified grounded theory approach was used to inductively develop and identify primary variables or components of the self-management process, contextual factors and a typology of engagement. A mixed methods analysis was undertaken to explore associations between the primary variables and establish a Conceptual Model of Consistency in Self-Management Engagement.

The resulting model suggested different primary factors are associated with levels of engagement (high, low). Key factors associated with a high consistency of engagement included: where the purpose of engagement was to control the illnesses and promote a healthy lifestyle; where responsibility was delegated to the provider for illness-management decisions; and where the type of engagement was either shared with, or dependent upon, a significant other (e.g. partner). Other influencing mediating factors included participant preferences for responsibility (autonomy) in decision-making and levels of health literacy, self-efficacy and intrinsic motivation of participants.

The concept of ‘consistency’ of self-management engagement should be explored in a larger, more heterogeneous sample of participants to validate this approach as one type of outcome indicator related to illness-management engagement.