Patient-centred care: The experiences of young adults with type 1 diabetes

Abstract

The health system appears to be in the midst of a paradigm shift. The transition is from provider-centred to patient-centred care (PCC). This emerging ideology has particular relevance in chronic disease management where the need for integrated and accessible care aligns with patient self-management. As the quintessential self-managed chronic disease, Type 1 diabetes (T1D) is at the cutting edge of this evolution. Of particular interest are young adults with T1D. They are known to have high attrition rates from diabetes health services and suffer worse health outcomes. Are these high attrition rates and health outcomes related, at least in part, to a failure to provide PCC? Patientsâ perspectives as the driver for improvement in health service quality and safety standards is both underdeveloped and under researched. This thesis used a combination of qualitative and quantitative methods to explore the perspectives of young adults with T1D in relation to their experience of PCC in diabetes health services. The thesis asked the following questions: Do young Australian adults with T1D access recommended multi-disciplinary health services? Do they perceive the delivery of those heath services as being patient-centred? Do the clinicians they consult engage with shared decision-making? Are diabetes education services patient-centred? In response to these research questions an Australia wide web-based survey provided data from 150 respondents in 2011. To expand on the survey results 33 respondents participated in focus groups health held in cities around Australia. Thesis empirical contributions include findings that show that the majority of young adults with T1D do not access recommended health services for reasons including: time constraints, service accessibility barriers, provision of inconsistent advice by clinicians, cost constraints, variable standards of services and failure of clinicians to refer to other clinicians. Respondents preferred clinicians who engage with shared decision-making and may fail to take-up health services when shared decision-making is not practiced. Reported experiences of diabetes education indicate pedagogical shortcomings and a failure by clinicians to develop patient autonomy in learning skills. The thesis provides evidence for the potential value of patient engagement in quality improvement and health service re-design.