Abstract

To explore service availability and accessibility for people with advanced chronic obstructive pulmonary disease (COPD) and their carers and strategies for improvement, including the potential role of a COPD care co-ordinator in ensuring best-practice care in the Australian context. This qualitative study used focus groups and interviews with health professionals, carers and consumers to explore gaps and restrictions in services, barriers to access and the functioning of services. Data were analysed deductively. Key themes arising from the data included difficulties around access to care, lack of continuity of care, poor care co-ordination, the need for active disease management as well as supportive care, and poor communication. A COPD care co-ordinator was suggested as an effective strategy for ensuring best-practice care. People with advanced COPD often have difficulty navigating the acute, primary and community care systems to deal with the multiple services that they may require. Lack of communication between health professionals and services is frequently a significant issue. A COPD care co-ordinator, encompassing advanced nursing skills, could ensure that care is centred on the needs of the person and their carer and that they receive continuing, appropriate and accessible care as they approach the end of their life.

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