Achieving a balanced life in the face of chronic illness
Yun-Hee Jeon A B H , Tanisha Jowsey A , Laurann Yen A , Nicholas J. Glasgow C , Beverley Essue D E , Marjan Kljakovic C , Carmen Pearce-Brown A , Masoud Mirzaei D G , Tim Usherwood F , Stephen Jan E , Stefan G. Kraus A and Clive Aspin DA Australian Primary Health Care Research Institute, Menzies Centre for Health Policy, The Australian National University, Building 62, Mills Road, Acton, ACT 0200, Australia.
B The Faculty of Nursing and Midwifery, The University of Sydney, 88 Mallett Street, Camperdown, NSW 2050, Australia.
C Medical School, The Australian National University, Frank Fenner Building 42, Acton, ACT 0200, Australia.
D Menzies Centre for Health Policy, Victor Coppleson Building (D02), The University of Sydney, Camperdown, NSW 2006, Australia.
E The George Institute for International Health, The University of Sydney, PO Box M201, Missenden Road, Camperdown, NSW 2050, Australia.
F Sydney Medical School, The University of Sydney, PO Box 154, Westmead, NSW 2145, Australia.
G Yazd Cardiovascular Research Centre, Shahid Sadoughi University, Jomhouri Boulevard, Yazd 89179, Iran.
H Corresponding author. Email: yjeon@usyd.edu.au
Australian Journal of Primary Health 16(1) 66-74 https://doi.org/10.1071/PY09039
Published: 17 March 2010
Abstract
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.
Additional keywords: chronic heart failure, chronic obstructive pulmonary disease, diabetes, qualitative methods.
Acknowledgements
The Serious and Continuing Illnesses Policy and Practice Study (SCIPPS) is an NHMRC-funded program conducted at The Australian National University and The University of Sydney and administered by The Menzies Centre for Health Policy. We would like to express our sincere gratitude to all of the patients and the carers who participated in this study. Special thanks are also due to the SCIPPS team members for their support.
Armstrong BK,
Gillespie JA,
Leeder SR,
Rubin GL, Russell LM
(2007) Challenges in health and health care for Australia. MJA 187(9), 485–489.
| PubMed |
[Verified September 2009]
Paterson BL,
Russell C, Thorne S
(2001) Critical analysis of everyday self-care decision making in chronic illness. Journal of Advanced Nursing 35(3), 335–341.
| Crossref | GoogleScholarGoogle Scholar | PubMed |
CAS |
[Verified 30 January 2009]
Wagner E,
Bennett S,
Austin B,
Greene S,
Schaefer J, Vonkorff M
(2005) Finding common ground: patient-centredness and evidence-based chronic illness care. Journal of Alternative and Complementary Medicine 11(Suppl. 1), s7–s15.
| Crossref | GoogleScholarGoogle Scholar | PubMed |
Yu DSF,
Lee DTF,
Kwong ANT,
Thompson DR, Woo J
(2008) Living with chronic heart failure: a review of qualitative studies of older people. Journal of Advanced Nursing 61(5), 474–483.
| Crossref | GoogleScholarGoogle Scholar | PubMed |
