Balancing life with a chronic disease

http://www.ncbi.nlm.nih.gov/pubmed/21133301

Aust J Prim Health. 2010;16(1):66-74.
Achieving a balanced life in the face of chronic illness.
Jeon YH, Jowsey T, Yen L, Glasgow NJ, Essue B, Kljakovic M, Pearce-Brown C, Mirzaei M, Usherwood T, Jan S, Kraus SG, Aspin C.

Australian Primary Health Care Research Institute, Menzies Centre for Health Policy, The Australian National University, Building 62, Mills Road, Acton, ACT 0200, Australia.

The increasing prevalence of chronic disease is a driver of health system reform in most economically advanced nations. A consistent theme within these reforms is building greater patient-centredness into the health care delivery. This study aims to develop an in-depth understanding of the experience of patients and family carers affected by chronic illness that will be the basis on which to propose policy and health system interventions that are patient-centred. Participants struggled with the ongoing tasks of balancing their lives with the increasing demands and intrusion of chronic illness. Their attempts to achieve a balance were seriously hampered by fragmented services, complexity in navigating health services, relationships with health professionals and others, and co-morbidity. Future policy directions include designing models of care and infrastructure that enable patients and their family carers to balance life and illness, and aligning patient-centred care not only within health services but also with community and social support services.