One size does not fit all: the different experiences of those with chronic heart failure, type 2 diabetes and chronic obstructive pulmonary disease
Katherine J. Corcoran A C , Tanisha Jowsey B and Stephen R. Leeder A
+ Author Affiliations
- Author Affiliations
A Menzies Centre for Health Policy, Sydney University, Victor Coppleson Building D02, University of Sydney, NSW 2006, Australia. Email: stephen.leeder@sydney.edu.au
B Australian Primary Health Care Research Institute and Menzies Centre for Health Policy, Australian National University, Ian Potter House, Australian National University, Acton, ACT 0200, Australia. Email: tanisha.jowsey@anu.edu.au
C Corresponding author. Email: katherine.corcoran@sydney.edu.au
Australian Health Review 37(1) 19-25 https://doi.org/10.1071/AH11092
Submitted: 28 September 2011 Accepted: 12 February 2012 Published: 19 November 2012
Abstract
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.
References
[1] Australian Institute of Health and Welfare. Chronic diseases and associated risk factors . (AIHW Catalogue No. PHE 81). Canberra: AIHW; 2006.[2] Australian Institute of Health and Welfare. Health system expenditure of diseases and injuries in Australia 2000–01. 2nd ed. (Health and Welfare Series No. 21, AIHW Cat. No. HWE-28). Canberra: AIHW; 2005.
[3] National Health Priority Action Council (NHPAC). National chronic disease strategy. Canberra: Australian Government Department of Health and Ageing; 2006.
[4] National Health Priority Action Council (NHPAC). National service improvement framework for osteoarthritis, rheumatoid arthritis and osteoporosis. Canberra: Australian Government Department of Health and Ageing; 2006.
[5] National Health Priority Action Council (NHPAC). National service improvement framework for asthma. Canberra: Australian Government Department of Health and Ageing; 2006.
[6] National Health Priority Action Council (NHPAC). National service improvement framework for cancer. Canberra: Australian Government Department of Health and Ageing; 2006.
[7] National Health Priority Action Council (NHPAC). National service improvement framework for diabetes. Canberra: Australian Government Department of Health and Ageing; 2006.
[8] National Health Priority Action Council (NHPAC). National service improvement framework for heart, stroke and vascular disease. Canberra: Australian Government Department of Health and Ageing; 2006.
[9] NSW Department of Health. NSW chronic care program, program phase three: 2006–2009, NSW chronic disease strategy. Sydney: NSW Department of Health; 2006.
[10] Department of Health. Primary Care Partnerships in Victoria. Melbourne: Department of Health. Available at http://www.health.vic.gov.au/pcps/index.htm [verified February 2011].
[11] National Health and Hospitals Reform Commission. A healthier future for all Australians: final report June 2009 . Report No.: P3–5499. Canberra: Commonwealth of Australia; 2009.
[12] Medicare Australia. Department of Human Services. Available at http://www.medicareaustralia.gov.au [verified February 2011].
[13] Clark RA, McLennan S, Dawson A, Wilkinson D, Stewart S. Uncovering a hidden epidemic: a study of the current burden of heart failure in Australia. Heart Lung Circ 2004; 13 266–73.
| Uncovering a hidden epidemic: a study of the current burden of heart failure in Australia.Crossref | GoogleScholarGoogle Scholar | 16352206PubMed |
[14] Australian Institute of Health and Welfare (AIHW). Cardiovascular disease: Australian facts 2011 (AIHW Cat. No. CVD 53). Canberra: AIHW; 2011.
[15] Jeon Y-H, Jowsey T, Yen L, Glasgow N, Essue B, Kljakovic M, et al Achieving a balanced life in the face of chronic illness: a qualitative study of patient experience. Aust J Primary Health 2010; 16 66–74.
| Achieving a balanced life in the face of chronic illness: a qualitative study of patient experience.Crossref | GoogleScholarGoogle Scholar |
[16] Jowsey T, Jeon Y-H, Dugdale P, Glasgow N, Kljakovic M, Usherwood T. Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study. Aust New Zealand Health Policy 2009; 6 22
| Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study.Crossref | GoogleScholarGoogle Scholar | 19735576PubMed |
[17] Jeon YH, Essue B, Jan S, Wells R, Whitworth JA. Economic hardship associated with managing chronic illness: a qualitative inquiry. BMC Health Serv Res 2009; 9 182
| Economic hardship associated with managing chronic illness: a qualitative inquiry.Crossref | GoogleScholarGoogle Scholar | 19818128PubMed |
[18] Essue B, Kelly PJ, Roberts M, Leeder SR, Jan S. We can’t afford my chronic illness! The out-of-pocket burden associated with managing chronic obstructive pulmonary disease in Western Sydney, Australia. J Health Serv Res Policy. 2011; 27 226–31.
| We can’t afford my chronic illness! The out-of-pocket burden associated with managing chronic obstructive pulmonary disease in Western Sydney, Australia.Crossref | GoogleScholarGoogle Scholar |
[19] Ab E, Denig P, van Vliet T, Dekker JH. Reasons of general practitioners for not prescribing lipid-lowering medication to patients with diabetes: a qualitative study. BMC Fam Pract 2009; 10 24
| Reasons of general practitioners for not prescribing lipid-lowering medication to patients with diabetes: a qualitative study.Crossref | GoogleScholarGoogle Scholar | 19383116PubMed |
[20] Malpass A, Andrews R, Turner KM. Patients with type 2 diabetes experiences of making multiple lifestyle changes: a qualitative study. Patient Educ Couns 2009; 74 258–63.
| Patients with type 2 diabetes experiences of making multiple lifestyle changes: a qualitative study.Crossref | GoogleScholarGoogle Scholar | 18848413PubMed |
[21] Johnson M, Newton P, Goyder E. Patient and professional perspectives on prescribed therapeutic footwear for people with diabetes: a vignette study. Patient Educ Couns 2006; 64 167–72.
| Patient and professional perspectives on prescribed therapeutic footwear for people with diabetes: a vignette study.Crossref | GoogleScholarGoogle Scholar | 16469472PubMed |
[22] Bayliss EA, Ellis JL, Steiner JF. Barriers to self-management and quality-of-life outcomes in seniors with multimorbidities. Ann Fam Med 2007; 5 395–402.
| Barriers to self-management and quality-of-life outcomes in seniors with multimorbidities.Crossref | GoogleScholarGoogle Scholar | 17893380PubMed |
[23] Moser A, van der Bruggen H, Widdershover G, Spreeuwenberg C. 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. BMC Public Health 2008; 8 91
| 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.Crossref | GoogleScholarGoogle Scholar | 18366665PubMed |
[24] Ockleford E, Shaw RL, Willars J, Dixon-Woods M. Education and self-management for people newly diagnosed with type 2 diabetes: a qualitative study of patients’ views. Chronic Illn 2008; 4 28–37.
| Education and self-management for people newly diagnosed with type 2 diabetes: a qualitative study of patients’ views.Crossref | GoogleScholarGoogle Scholar | 18322027PubMed |
[25] Barton SS, Anderson N, Thommasen HV. The diabetes experiences of Aboriginal people living in a rural Canadian community. Aust J Rural Health 2005; 13 242–6.
| The diabetes experiences of Aboriginal people living in a rural Canadian community.Crossref | GoogleScholarGoogle Scholar | 16048467PubMed |
[26] Goodridge D, Trepman E, Embil JM. Health-related quality of life in diabetic patients with foot ulcers: literature review. J Wound Ostomy Continence Nurs 2005; 32 368–77.
| Health-related quality of life in diabetic patients with foot ulcers: literature review.Crossref | GoogleScholarGoogle Scholar | 16301902PubMed |
[27] Nield L, Moore H, Hooper L, Cruikshank K, Vyas A, Whittaker V, et al Dietary advice for treatment of type 2 diabetes mellitus in adults. Cochrane Collaboration 2007;
[28] Thomas D, Elliott EJ, Naughton GA. Exercise for type 2 diabetes mellitus. Cochrane Collaboration 2003;
[29] Welschen LM, Bloemendal E, Nijpels G, Dekker JM, Heine RJ, Stalman WA, et al Self-monitoring of blood glucose in patients with type 2 diabetes mellitus who are not using insulin. Cochrane Collaboration 2005;
[30] Jeon Y-H, Kraus SG, Jowsey T, Glasgow N. The experience of living with chronic heart failure: a narrative review of qualitative studies. BMC Health Serv Res 2010; 10 77
| The experience of living with chronic heart failure: a narrative review of qualitative studies.Crossref | GoogleScholarGoogle Scholar | 20331904PubMed |
[31] Luttik ML, Blaauwbroek A, Dijker A, Jaarsma T. Living with heart failure: partner perspectives. J Cardiovasc Nurs 2007; 22 131–7.
| 17318039PubMed |
[32] Pattenden JF, Roberts H, Lewin RJP. Living with heart failure; patient and carer perspectives. Eur J Cardiovasc Nurs 2007; 6 273–9.
| Living with heart failure; patient and carer perspectives.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD2snpsVSktg%3D%3D&md5=6f3eee84e58ffa96ebf0e30fa8aecdd1CAS | 17383236PubMed |
[33] Annema C, Luttik M-L, Jaarsma T. Reasons for readmission in heart failure: perspectives of patients, caregivers, cardiologists, and heart failure nurses. Heart Lung 2009; 38 427–34.
| Reasons for readmission in heart failure: perspectives of patients, caregivers, cardiologists, and heart failure nurses.Crossref | GoogleScholarGoogle Scholar | 19755193PubMed |
[34] Barnes S, Gott M, Payne S, Parker C, Seamark D, Gariballa S, et al Characteristics and views of family carers of older people with heart failure. Int J Palliat Nurs 2006; 12 380–9.
| 17077796PubMed |
[35] Dickson VV, Riegel B. Are we teaching what patients need to know? Building skills in heart failure self-care. Heart Lung 2009; 38 253–61.
| Are we teaching what patients need to know? Building skills in heart failure self-care.Crossref | GoogleScholarGoogle Scholar | 19486796PubMed |
[36] Reid M, Clark A, Murdoch DL, Morrison C, Capewell S, McMurray J. Patients strategies for managing medication for chronic heart failure. Int J Cardiol 2006; 109 66–73.
| Patients strategies for managing medication for chronic heart failure.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD287otVChtQ%3D%3D&md5=d404047afdf71612676b6b821f02a161CAS | 15993960PubMed |
[37] Wu J-R, Moser DK, Lennie TA, Peden AR, Chen Y-C, Heo S. Factors influencing medication adherence in patients with heart failure. Heart Lung 2008; 37 8–16.
| Factors influencing medication adherence in patients with heart failure.Crossref | GoogleScholarGoogle Scholar | 1:CAS:528:DC%2BD1cXkslKltLo%3D&md5=b388db1364ec134768ae1a43a9f28cf8CAS | 18206522PubMed |
[38] Granger BB, Moser D, Germino B, Harrell J, Ekman I. Caring for patients with chronic heart failure: the trajectory model. Eur J Cardiovasc Nurs 2006; 5 222–7.
| Caring for patients with chronic heart failure: the trajectory model.Crossref | GoogleScholarGoogle Scholar | 16616643PubMed |
[39] Heo S, Lennie TA, Okoli C, Moser DK. Quality of life in patients with heart failure: ask the patients. Heart Lung 2009; 38 100–8.
| Quality of life in patients with heart failure: ask the patients.Crossref | GoogleScholarGoogle Scholar | 19254628PubMed |
[40] Barnett M. Chronic obstructive pulmonary disease: a phenomenological study of patients’ experiences. J Clin Nurs 2005; 14 805–12.
| Chronic obstructive pulmonary disease: a phenomenological study of patients’ experiences.Crossref | GoogleScholarGoogle Scholar | 16000094PubMed |
[41] Boot CRL, van Exel NJA, van der Gulden JWJ. “My lung disease won’t go away, it’s there to stay”: profiles of adaptation to functional limitations in workers with asthma and COPD. J Occup Rehabil 2009; 19 284–92.
| “My lung disease won’t go away, it’s there to stay”: profiles of adaptation to functional limitations in workers with asthma and COPD.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD1MvovFWntg%3D%3D&md5=0d652fdb33c73adcd3f0ca86ccc9a641CAS |
[42] Chen K-H, Chen M-L, Lee S, Cho H-Y, Weng L-C. Self-management behaviours for patients with chronic obstructive pulmonary disease: a qualitative study. J Adv Nurs 2008; 64 595–604.
| Self-management behaviours for patients with chronic obstructive pulmonary disease: a qualitative study.Crossref | GoogleScholarGoogle Scholar | 19120574PubMed |
[43] Foster JM, Aucott L, van der Werf RHW, van der Meijden MJ, Schraa G, Postma DS, et al Higher patient perceived side effects related to higher daily doses of inhaled corticosteroids in the community: a cross-sectional analysis. Respir Med 2006; 100 1318–36.
| Higher patient perceived side effects related to higher daily doses of inhaled corticosteroids in the community: a cross-sectional analysis.Crossref | GoogleScholarGoogle Scholar | 16442275PubMed |
[44] Gott M, Gardiner C, Small N, Payne S, Seamark D, Barnes S, et al Barriers to advance care planning in chronic obstructive pulmonary disease. Palliat Med 2009; 23 642–8.
| Barriers to advance care planning in chronic obstructive pulmonary disease.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD1MjhsFSluw%3D%3D&md5=d466a8bbc8c568340dcdd2a7b29f67daCAS | 19648222PubMed |
[45] Trendall J, Esmond G. Fatigue in people with chronic obstructive pulmonary disease: development of an assessment tool. J Clin Nurs 2007; 16 116–22.
| Fatigue in people with chronic obstructive pulmonary disease: development of an assessment tool.Crossref | GoogleScholarGoogle Scholar | 17584420PubMed |
[46] Williams V, Bruton A, Ellis-Hill C, McPherson K. The effect of pulmonary rehabilitation on perceptions of breathlessness and activity in COPD patients: a qualitative study. Prim Care Respir J 2010; 19 45–51.
| The effect of pulmonary rehabilitation on perceptions of breathlessness and activity in COPD patients: a qualitative study.Crossref | GoogleScholarGoogle Scholar | 19603125PubMed |
[47] Morse JM, Field PA. Qualitative research methods for health professionals. 2nd ed. California: Sage Publications; 1995.
[48] QSR. NVivo [computer program]. Version 7. Melbourne: QSR International Pty Ltd; 2007.
[49] Lincoln YS, Guba EG. Naturalistic inquiry. Beverly Hills, California; SAGE Publications; 1985.
[50] Horowitz CR, Rein SB, Leventhal H. A story of maladies, misconceptions and mishaps: effective management of heart failure. Soc Sci Med 2004; 58 631–43.
| A story of maladies, misconceptions and mishaps: effective management of heart failure.Crossref | GoogleScholarGoogle Scholar | 14652059PubMed |
[51] Carlson B, Reigel B, Moser DK. Self-care abilities of patients with heart failure. Heart Lung 2001; 30 351–9.
| Self-care abilities of patients with heart failure.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD3Mrlsl2ksA%3D%3D&md5=a7149df6fe4e23195e606335d5f14e25CAS | 11604977PubMed |
[52] Bosworth HB, Steinhauser KE, Orr M, Lindquist JH, Grambow SC, Oddone EZ. Congestive heart failure patients’ perceptions of quality of life: the integration of physical and psychosocial factors. Aging Ment Health 2004; 8 83–91.
| Congestive heart failure patients’ perceptions of quality of life: the integration of physical and psychosocial factors.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD3sngsl2ksw%3D%3D&md5=1794235024ec3f5eaf449997286fa6b6CAS | 14690872PubMed |
[53] Brännström M, Ekman I, Norberg A, Boman K, Strandberg G. Living with severe chronic heart failure in palliative advanced home care. Eur J Cardiovasc Nurs 2006; 5 295–302.
| Living with severe chronic heart failure in palliative advanced home care.Crossref | GoogleScholarGoogle Scholar | 16546447PubMed |
[54] Restrick LJ, Paul EA, Braid GM, Cullinan P, Moore-Gillon J, Wedzicha JA. Assessment and follow up of patients prescribed long term oxygen treatment. Thorax 1993; 48 708–13.
| Assessment and follow up of patients prescribed long term oxygen treatment.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK2c3gsV2luw%3D%3D&md5=ca9bb045b4a0eeecda9baabe03ce2358CAS | 8153918PubMed |
[55] Belfer MH, Reardon JZ. Improving exercise tolerance and quality of life in patients with chronic obstructive pulmonary disease. J Am Osteopath Assoc 2009; 109 268–78.
| 19451260PubMed |
[56] Wan Q, Harris M, Jayasinghe U, Flack J, Georgiou A, Penn D, et al Quality of diabetes care and coronary heart disease absolute risk in patients with type 2 diabetes mellitus in Australian general practice. Qual Saf Health Care 2006; 15 131–5.
| Quality of diabetes care and coronary heart disease absolute risk in patients with type 2 diabetes mellitus in Australian general practice.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD287ovVejsQ%3D%3D&md5=dd52c78067db26207303b4d31945250cCAS | 16585115PubMed |
[57] Saydah SH, Fradkin J, Cowie CC. Poor control of risk factors for vascular disease among adults with previously diagnosed diabetes. JAMA 2004; 291 335–42.
| Poor control of risk factors for vascular disease among adults with previously diagnosed diabetes.Crossref | GoogleScholarGoogle Scholar | 1:CAS:528:DC%2BD2cXmtlentQ%3D%3D&md5=2a363b48b11f298c802be249ba377444CAS | 14734596PubMed |
[58] Chiu C-J, Wray LA, Beverly EA, Dominic OG. The role of health behaviors in mediating the relationship between depressive symptoms and glycemic control in type 2 diabetes: a structural equation modeling approach. Soc Psychiatry Psychiatr Epidemiol 2010; 45 67–76.
| The role of health behaviors in mediating the relationship between depressive symptoms and glycemic control in type 2 diabetes: a structural equation modeling approach.Crossref | GoogleScholarGoogle Scholar | 19343264PubMed |
