The rhetoric and reality of long-term condition self-management in New Zealand

Abstract

Introduction: A long-term condition impacts an individual in a number of ways, and it is the individual who learns to incorporate and balance the imposition of a long-term condition with other aspects of their lives through the action of self-management. The idea of self-management has been incorporated into health service models with the aim of reducing utilisation of health services and improving quality of life for people living with long-term conditions. However, the literature suggests these goals are not necessarily being achieved. Additionally, there appears to be tension between the perspectives of the individual and the health professional regarding self-management. The focus of this thesis was to explore the individual, nurse and policy perspectives within New Zealand about self-management and how these may impact on an individual’s long-term condition self-management ability.

Method:The design of this study was a qualitatively driven, convergent mixed method research study, incorporating a sequential quantitative component. Data collection involved a critical discourse analysis of three key documents; nine interviews with individuals living with long-term conditions, interviews with fourteen nurses; and a New Zealand wide e-survey with 251 respondents. Results:The critical discourse analysis revealed two underlying discourses, those of New Public Health and Kaupapa Maori. Findings from this study evidenced nurses held a very strong underlying belief of responsibility for the individuals they worked with. Findings from individual interviews suggested individuals held a supervisory role in self-management, and the e-survey evidenced a theme of regulation. The theme of loss was evident within the individual interviews and the e-survey. The e-survey revealed one-third of respondents reported very good to excellent health. High health distress and social and role activity limitations negatively impacted self-efficacy to manage symptoms, and continue with activities of daily life. High self-efficacy resulted in a belief that daily living with a long-term condition was possible. Approximately one-quarter of respondents reported ability to communicate effectively with their doctor, yet only two-thirds believed they were able to. Two-thirds of the respondents reported they were not confident about getting the help they required from others. Discussion: The reality of self-management was shown to be an active and constantly changing, daily process rather than a static, linear or achievable goal. Individuals balanced the loss of their health and altered health status with the necessity for ongoing engagement with everyday life. This process often changed previous priorities and requirements. Additionally, the reality of self-management resulted in a disconnection from others. Expectations embedded within the discourse of policy (the rhetoric of self-management) created obligations for individuals that were not always helpful or achievable. Individuals were shown to make self-management decisions based on the context of their lives. However, this experiential knowledge was not privileged by either policy or healthcare professionals. The rhetoric of self-management affected professional’s practice through medicalisation of self-management and introduction of legislation regulating and monitoring practice. Thus, the healthcare professional became mediator and manager of resources and patient expectations as determined by policy rhetoric, while at the same time having their practice constrained.