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.

[1]  J. Whitworth,et al.  Economic hardship associated with managing chronic illness: a qualitative inquiry , 2009, BMC health services research.

[2]  C. Chiu,et al.  The role of health behaviors in mediating the relationship between depressive symptoms and glycemic control in type 2 diabetes: a structural equation modeling approach , 2009, Social Psychiatry and Psychiatric Epidemiology.

[3]  J. McMurray,et al.  Patients strategies for managing medication for chronic heart failure. , 2006, International journal of cardiology.

[4]  E. Trepman,et al.  Health-related quality of life in diabetic patients with foot ulcers: literature review. , 2005, Journal of wound, ostomy, and continence nursing : official publication of The Wound, Ostomy and Continence Nurses Society.

[5]  D. Miller,et al.  Health-related quality of life , 2002, Multiple sclerosis.

[6]  D. Postma,et al.  Higher patient perceived side effects related to higher daily doses of inhaled corticosteroids in the community: a cross-sectional analysis. , 2006, Respiratory medicine.

[7]  T. Usherwood,et al.  Achieving a balanced life in the face of chronic illness. , 2010, Australian journal of primary health.

[8]  Elizabeth A Bayliss,et al.  Barriers to Self-Management and Quality-of-Life Outcomes in Seniors With Multimorbidities , 2007, The Annals of Family Medicine.

[9]  J. Reardon,et al.  Improving Exercise Tolerance and Quality of Life in Patients With Chronic Obstructive Pulmonary Disease , 2009, The Journal of the American Osteopathic Association.

[10]  G. Esmond,et al.  Fatigue in people with chronic obstructive pulmonary disease: development of an assessment tool. , 2007, Journal of clinical nursing.

[11]  B. Granger,et al.  Caring for Patients with Chronic Heart Failure: The Trajectory Model , 2006, European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology.

[12]  Hsiu-Ying Cho,et al.  Self-management behaviours for patients with chronic obstructive pulmonary disease: a qualitative study. , 2008, Journal of advanced nursing.

[13]  K. Steinhauser,et al.  Congestive heart failure patients’ perceptions of quality of life: the integration of physical and psychosocial factors , 2004, Aging & mental health.

[14]  U. W. Jayasinghe,et al.  Quality of diabetes care and coronary heart disease absolute risk in patients with type 2 diabetes mellitus in Australian general practice , 2006, Quality and Safety in Health Care.

[15]  S. Saydah,et al.  Poor control of risk factors for vascular disease among adults with previously diagnosed diabetes , 2004 .

[16]  A. Norberg,et al.  Living with Severe Chronic Heart Failure in Palliative Advanced Home Care , 2006, European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology.

[17]  D. Moser,et al.  Quality of life in patients with heart failure: ask the patients. , 2009, Heart & lung : the journal of critical care.

[18]  D. Halpin,et al.  Barriers to advance care planning in chronic obstructive pulmonary disease , 2009, Palliative medicine.

[19]  J. Pattenden,et al.  Living with Heart Failure; Patient and Carer Perspectives , 2007, European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology.

[20]  A. Dijker,et al.  Living With Heart Failure: Partner Perspectives , 2007, The Journal of cardiovascular nursing.

[21]  Maxine Johnson,et al.  Patient and professional perspectives on prescribed therapeutic footwear for people with diabetes: a vignette study. , 2006, Patient education and counseling.

[22]  Guy Widdershoven,et al.  Self-management of type 2 diabetes mellitus: a qualitative investigation from the perspective of participants in a nurse-led, shared-care programme in the Netherlands , 2008, BMC public health.

[23]  J. Morse,et al.  Qualitative Research Methods for Health Professionals , 1995 .

[24]  Tanisha Jowsey,et al.  The experience of living with chronic heart failure: a narrative review of qualitative studies , 2010, BMC health services research.

[25]  B. Riegel,et al.  Are we teaching what patients need to know? Building skills in heart failure self-care. , 2009, Heart & lung : the journal of critical care.

[26]  P. Denig,et al.  Reasons of general practitioners for not prescribing lipid-lowering medication to patients with diabetes: a qualitative study , 2009, BMC family practice.

[27]  G A Naughton,et al.  Exercise for type 2 diabetes mellitus. , 2006, The Cochrane database of systematic reviews.

[28]  K. McPherson,et al.  The effect of pulmonary rehabilitation on perceptions of breathlessness and activity in COPD patients: a qualitative study. , 2009, Primary care respiratory journal : journal of the General Practice Airways Group.

[29]  Mary Dixon-Woods,et al.  Education and self-management for people newly diagnosed with type 2 diabetes: a qualitative study of patients' views , 2008, Chronic illness.

[30]  Jia-Rong Wu,et al.  Factors influencing medication adherence in patients with heart failure. , 2008, Heart & lung : the journal of critical care.

[31]  L. Welschen,et al.  Self-monitoring of blood glucose in patients with type 2 diabetes mellitus who are not using insulin. , 2012, The Cochrane database of systematic reviews.

[32]  Tiny Jaarsma,et al.  Reasons for readmission in heart failure: Perspectives of patients, caregivers, cardiologists, and heart failure nurses. , 2009, Heart & lung : the journal of critical care.

[33]  D. Moser,et al.  Self-care abilities of patients with heart failure. , 2001, Heart & lung : the journal of critical care.

[34]  S. Leeder,et al.  We can't afford my chronic illness! The out-of-pocket burden associated with managing chronic obstructive pulmonary disease in western Sydney, Australia , 2011, Journal of health services research & policy.

[35]  P Johnstone,et al.  Dietary advice for treatment of type 2 diabetes mellitus in adults. , 2007, The Cochrane database of systematic reviews.

[36]  J. Wedzicha,et al.  Assessment and follow up of patients prescribed long term oxygen treatment. , 1993, Thorax.

[37]  Carol R Horowitz,et al.  A story of maladies, misconceptions and mishaps: effective management of heart failure. , 2004, Social science & medicine.

[38]  Sylvia S Barton,et al.  The diabetes experiences of Aboriginal people living in a rural Canadian community. , 2005, The Australian journal of rural health.

[39]  C. Boot,et al.  “My Lung Disease Won’t Go Away, it’s There to Stay”: Profiles of Adaptation to Functional Limitations in Workers with Asthma and COPD , 2009, Journal of Occupational Rehabilitation.

[40]  S. Payne,et al.  Characteristics and views of family carers of older people with heart failure. , 2006, International journal of palliative nursing.

[41]  Katrina M Turner,et al.  Patients with Type 2 Diabetes experiences of making multiple lifestyle changes: a qualitative study. , 2009, Patient education and counseling.

[42]  T. Usherwood,et al.  Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study , 2009, Australia and New Zealand health policy.

[43]  S. Stewart,et al.  Uncovering a hidden epidemic: a study of the current burden of heart failure in Australia. , 2004, Heart, lung & circulation.

[44]  Margaret Barnett,et al.  Chronic obstructive pulmonary disease: a phenomenological study of patients' experiences. , 2005, Journal of clinical nursing.