One size does not fit all: The different experiences of those with chronic heart failure, type 2 diabetes and chronic obstructive pulmonary disease

Introduction. The Australian federal government is developing a policy response to chronic disease in Australia. The Serious and Continuing Illness Policy and Practice Study examined the experience of individuals with chronic heart failure (CHF), chronic obstructive pulmonary disease (COPD) or type 2 diabetes mellitus (diabetes) in the Australian Capital Territory (ACT) and Western Sydney. This paper describes the disease-specific experiences of people interviewed.

Methods. We conducted semi-structured interviews with 40 individuals aged 45-85 years with CHF, COPD or diabetes in 2008. Interviews were recorded and transcribed. Qualitative content analysis was performed, assisted by QSR Nvivo 8 qualitative data software. 

Results. Participants with CHF (n≤9) came to terms with the prospect of unpredictable sudden death. Participants with COPD (n≤15) were angry about limitations it imposed on their lives. Participants with diabetes (n≤16) experienced a steep learning curve in self-management of their condition surrounded by high levels of uncertainty. 

Conclusion. Although people with chronic illness share many experiences, a person's overall experience of living with chronic illness is significantly shaped by the nature of their specific dominant disease. Policies for patient-centred care must take account of both generic and disease-specific elements. What is known about the topic? There is a large qualitative literature relating to the disease-specific experiences and needs of individuals with diabetes, and a growing literature on CHF and COPD . However, the extent to which patient experiences and responses are specific to one condition rather than generic to all is not clear. What does this paper add? This study identified that pushing one's limits is central to the experience of living with COPD; this has not been reported elsewhere but is critical to our understanding of the behaviours and needs of people living with COPD. Such characteristics, when specific to a condition, are reported in this paper. What are the implications for practitioners? Understanding the different experiences associated with specific chronic diseases can enable healthcare services to tailor programs and services to people with those problems. This finding is particularly relevant where interactions are time limited, such as in general practice settings.