Informal care and the self-management partnership: implications for Australian health policy and practice
Beverley M. Essue A B G , Tanisha Jowsey C , Yun-Hee Jeon C D , Masoud Mirzaei A E , Carmen L. Pearce-Brown C , Clive Aspin A and Tim P. Usherwood FA The Menzies Centre for Health Policy, The University of Sydney, Victor Coppleson Building (D02), Camperdown, NSW 2006, Australia. Email: clive.aspin@sydney.edu.au
B The George Institute for Global Health, The University of Sydney, PO Box M201, Missenden Road, Sydney, NSW 2050, Australia.
C Australian Primary Health Care Research Institute, The Menzies Centre for Health Policy, The Australian National University, Ian Potter House, Canberra, ACT 0200, Australia. Email: tanisha.jowsey@anu.edu.au; carmen.pearce-brown@anu.edu.au
D Sydney Nursing School (M02), The University of Sydney, Sydney, NSW 2006, Australia. Email: yun-hee.jeon@sydney.edu.au
E Yazd Cardiovascular Research Centre, Shahid Sadoughi University, Afshar Hospital, Jomhouri Boulevard, Yazd 89179, Iran. Email: mmirzaei@ssu.ac.ir
F Department of General Practice, Sydney Medical School – Western, The University of Sydney, PO Box 154, Westmead, NSW 2145, Australia. Email: tim.usherwood@sydney.edu.au
G Corresponding author. Email: beverley.essue@sydney.edu.au
Australian Health Review 34(4) 414-422 https://doi.org/10.1071/AH09795
Submitted: 14 June 2009 Accepted: 15 February 2010 Published: 25 November 2010
Abstract
Objective. The Serious and Continuing Illness Policy and Practice Study (SCIPPS) aims to improve the care and support for patients with chronic illness and their family carers. Here we describe the carers’ contribution to the self-management partnership and discuss the policy and practice implications that are relevant to improving the support available for informal care in Australia.
Design. A secondary analysis of SCIPPS data. Fourteen carers of patients between 45 and 85 years with chronic heart failure, chronic obstructive pulmonary disease and diabetes were conveniently sampled from western Sydney and the Australian Capital Territory. Semi-structured interviews were conducted. Data were analysed using qualitative content analysis.
Results. Key roles that carers perform in the self-management partnership included: home helper; lifestyle coach; advocate; technical care manager; and health information interpreter. Two negative consequences of juggling these roles included: self-neglect and conflict.
Conclusions. Rigid eligibility criteria limit carers’ access to essential support programs which underestimates and undervalues their contributions to the self-management partnership. Support services should focus on the development of practical skills to perform the caregiving roles. In addition, health professionals require support to work more effectively with carers to minimise the conflict that can overshadow the care and self-management partnership.
What is known about the topic? There is a body of research developed both internationally and in Australia that describes the role of family carers in assisting family members with disabilities and other chronic illnesses to maintain independence in the home and community and that deals with the negative implications of caregiving. Much of the existing research is focussed on the roles and responsibilities that family carers perform in order to compensate for their care recipient’s physical and cognitive impairments due to illness.
What does this paper add? This paper adds a qualitative exploration of the contribution that family carers make to the self-management partnership with care recipients and health professionals in the home, community and health care settings. It provides additional insights on the exact roles that family carers perform as part of the self-management partnership with care recipients who have chronic heart failure, chronic obstructive pulmonary disease and complicated diabetes. Furthermore, it offers a detailed discussion of the policy and practice implications of our findings and their relevance to improving the support available for informal care in Australia.
What are the implications for practitioners? Carers have a vital role to play in the provision of care and this role is expected to increase in parallel with the rising rates of chronic illness. The paper discusses policy recommendations for improving access, demand and appropriateness of support services for carers providing support for care recipients not traditionally recognised as having a genuine need for care. It also identifies the need for health professionals to work more effectively with family carers by making explicit their expectations of this role in order to minimise conflict in the care partnership.
References
[1] Disability, ageing and carers: Summary of findings, Australia 2003. Canberra: Australian Bureau of Statistics; 2004. Cat. no. 4430.0. Available at http://www.ausstats.abs.gov.au/ausstats/subscriber.nsf/0/978A7C78CC11B702CA256F0F007B1311/$File/44300_2003.pdf [verified 25 April 2009].[2] Australia’s Welfare 2005. Canberra: Australian Institute of Health and Welfare; 2005. AIHW cat. no. AUS65. Available at http://www.aihw.gov.au/publications/aus/aw05/aw05.pdf [verified 25 April 2009].
[3] Percival R. Who’s going to care? Informal care and an aging population. Canberra: National Centre for Social and Economic Modelling (NATSEM); 2004. Available at http://www.bsl.org.au/pdfs/informal_care_NATSEM.pdf [verified 1 April 2009].
[4] Trends in Aged Care Services: some implications. Canberra: Productivity Commission; 2008. Available at http://www.pc.gov.au/__data/assets/pdf_file/0004/83380/aged-care-trends.pdf [verified 30 April 2009].
[5] Lorig KR, Holman HR. Self-management education: History, definition, outcomes, and mechanisms. Ann Behav Med 2003; 26 1–7.
| Self-management education: History, definition, outcomes, and mechanisms.Crossref | GoogleScholarGoogle Scholar | 12867348PubMed |
[6] Wagner EH. Chronic disease management: what will it take to improve care for chronic illness? Eff Clin Pract 1998; 1 2–4.
| 1:STN:280:DyaK1M7ks1WitA%3D%3D&md5=731d39a8c0940a8afb2b1f122a6d55b3CAS | 10345255PubMed |
[7] DiMatteo MR. Social support and patient adherence to medical treatment: a meta-analysis. Health Psychol 2004; 23 207–18.
| Social support and patient adherence to medical treatment: a meta-analysis.Crossref | GoogleScholarGoogle Scholar | 15008666PubMed |
[8] Martire LM, Lustig AP, Schulz R, Miller GE, Helgeson VS. Is it beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health Psychol 2004; 23 599–611.
| Is it beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness.Crossref | GoogleScholarGoogle Scholar | 15546228PubMed |
[9] Wang C-Y, Fenske MM. Self-care of adults with non-insulin-dependent diabetes mellitus: influence of family and friends. Diabetes Educ 1996; 22 465–70.
| Self-care of adults with non-insulin-dependent diabetes mellitus: influence of family and friends.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK2s%2FptVaitQ%3D%3D&md5=beaf2a00e7dcec44cadb2dda0ac38ba4CAS | 8936125PubMed |
[10] Xiaolian J, Chaiwan S, Panuthai S, Yijuan C, Lei Y, Jiping L. Family support and self-care behavior of Chinese chronic obstructive pulmonary disease patients. Nurs Health Sci 2002; 4 41–9.
| Family support and self-care behavior of Chinese chronic obstructive pulmonary disease patients.Crossref | GoogleScholarGoogle Scholar | 12084020PubMed |
[11] National Health Priority Action Council (NHPAC). National Chronic Disease Strategy. Canberra: Australian Government Department of Health and Ageing; 2006. Available at www.health.gov.au/chronicdiseasestrategy [verified 30 March 2009].
[12] Health ACT. ACT Chronic Disease Strategy 2008–2011. Canberra: ACT Health. Available at http://www.health.act.gov.au/c/health?a=dlpol&policy=1190165949 [verified 30 March 2009].
[13] NSW Chronic Care Program: Rehabilitation for Chronic Disease – Volume 1. Sydney: NSW Department of Health; 2006. Available at http://www.health.nsw.gov.au/pubs/2006/pdf/chroniccare_vol1.pdf [verified 30 March 2009].
[14] A Healthier Future for all Australians – Final Report of the National Health and Hospitals Reform Commission. June 2009. Chapter 5. Creating an agile and self-improving health system. Canberra: National Health and Hospital Reform Commission (NHHRC) and Commonwealth of Australia; 2009. Available at http://www.health.gov.au/internet/nhhrc/publishing.nsf/Content/1AFDEAF1FB76A1D8CA257600000B5BE2/$File/CHAPTER%205.pdf [verified 8 October 2010].
[15] House of Representatives Standing Committee on Family Community Housing and Youth. Who Cares…? Report on the inquiry into better support for carers. Canberra: The Parliament of the Commonwealth of Australia; 2009. Available at http://www.aph.gov.au/House/committee/fchy/Carers/report.htm#chapters [verified 1 June 2009].
[16] Morse J, Field P. Qualitative research methods for health professionals. 2nd edn. Thousand Oaks, CA: Sage Publications; 1995.
[17] Lincoln Y, Guba E. Naturalistic inquiry. Newbury Park, CA: Sage Publications; 1985.
[18] Clark AM, Reid ME, Morrison CE, Capewell S, Murdoch DL, McMurray JJ. The complex nature of informal care in home-based heart failure management. J Adv Nurs 2008; 61 373–83.
| The complex nature of informal care in home-based heart failure management.Crossref | GoogleScholarGoogle Scholar | 18234035PubMed |
[19] Mackenzie AE, Holroyd EE. An exploration of the carers’ perceptions of caregiving and caring responsibilities in Chinese families. Int J Nurs Stud 1996; 33 1–12.
| An exploration of the carers’ perceptions of caregiving and caring responsibilities in Chinese families.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK283jslWksA%3D%3D&md5=4add2065709bcd8816c835c71aaddce7CAS | 8655259PubMed |
[20] Murphy DJ, Williamson P, Nease D. Supportive family members of diabetic adults. Fam Pract Res J 1994; 14 323–31.
| 1:STN:280:DyaK2M7msl2ruw%3D%3D&md5=83e11b13e73dd4229118703dcf810927CAS | 7863804PubMed |
[21] Lukkarinen H, Kyngas H. Experiences of the onset of coronary artery disease in a spouse. Eur J Cardiovasc Nurs 2003; 2 189–94.
| Experiences of the onset of coronary artery disease in a spouse.Crossref | GoogleScholarGoogle Scholar | 14622626PubMed |
[22] Sales E. Family burden and quality of life. Qual Life Res 2003; 12 33–41.
| Family burden and quality of life.Crossref | GoogleScholarGoogle Scholar | 12803309PubMed |
[23] Knoll SM, Johnson J. Uncertainty and expectations: taking care of a cardiac surgery patient at home. J Cardiovasc Nurs 2000; 14 64–75.
| 1:STN:280:DC%2BD3c3hvF2lsA%3D%3D&md5=64c0b500dfa414f83b6e647859d11ec9CAS | 10756475PubMed |
[24] Seamark DA, Blake SD, Seamark CJ, Halpin DMG. Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their carers. An interpretative phenomenological analysis. Palliat Med 2004; 18 619–25.
| Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their carers. An interpretative phenomenological analysis.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD2crmvVeluw%3D%3D&md5=a9b6df8a3102e11bcfc69484e8ff4603CAS | 15540670PubMed |
[25] Diabetes Management in General Practice. Guidelines for Type 2 Diabetes (2009–2010). Gorokan, NSW: Diabetes Australia and Royal Australian College of General Practitioners; 2009. Available at http://www.diabetesaustralia.com.au/PageFiles/763/Diabetes%20Management%20in%20GP%2009.pdf [verified 7 October 2010].
[26] Krum H, Jelinek M, Stewart S, Sindone A, Atherton JJ, Hawkes AL. Guidelines for the prevention, detection and management of people with chronic heart failure in Australia 2006. Med J Aust 2006; 185 549–57.
| 17115967PubMed |
[27] McKenzie DK, Frith PA, Burdon JGW, Town GI. The COPDX Plan: Australian and New Zealand guidelines for the management of Chronic Obstructive Pulmonary Disease 2003. MJA 2003; 178 S1–S40.
[28] Dow B. The invisible contract: shifting care from the hospital to the home. Aust Health Rev 2007; 31 193–202.
| The invisible contract: shifting care from the hospital to the home.Crossref | GoogleScholarGoogle Scholar | 17470039PubMed |
[29] NSW carers action plan: 2007–2012. Sydney: NSW Department of Health; 2007. Available at http://www.health.nsw.gov.au/policies/pd/2007/pdf/PD2007_018.pdf [verified 25 November 2009].
[30] Caring for carers in the ACT – a plan for action. ACT Government 2004–2007. Canberra: ACT Government; 2004. Available at http://www.dhcs.act.gov.au/__data/assets/pdf_file/0013/7240/DHCS_Carers_Plan.pdf [verified 25 November 2009].
[31] South Australia Department of Families and Communities. SA carers policy: supporting carers. Adelaide: Government of South Australia; 2006. Cat no. 362.0425. Available at http://www.sa.gov.au/upload/franchise/Community%20Support/Final%20Carers%20Policy.pdf [verified 25 November 2009].
[32] Carer Action Plan 2006–2010. Brisbane: Queensland Government. Available at http://www.disability.qld.gov.au/support-services/carers/documents/carers-action-plan.pdf [verified 25 November 2009].
[33] Owen A, Marosszeky N, Ramsay L, Rix M, Eagar K. Carer eligibility and needs assessment for the National Respite for Carers Program: consultation paper. Wollongong: Centre for Health Service Development, University of Wollongong; 2005. Available at http://ro.uow.edu.au/cgi/viewcontent.cgi?article=1005&context=chsd [verified 3 December 2009].
[34] Saunders P, Fine M. The mixed economy of support for the aged in Australia. Lessons for privatisation. Social Policy Research Centre Discussion Papers, No 39. Kensington, NSW: Social Policy Research Centre, University of New South Wales; 1992.
[35] Kuyper MB, Webster F. In the shadow: the impact of chronic illness on the patient’s partner. Qual Health Res 1998; 8 237–53.
| In the shadow: the impact of chronic illness on the patient’s partner.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK1Mvhslymtw%3D%3D&md5=a456c3a9bf67c0fe27c5fb9df27b7d3bCAS | 10558331PubMed |
[36] Burton LC, Zdaniuk B, Schulz R, Jackson S, Hirsch C. Transitions in spousal caregiving. Gerontologist 2003; 43 230–41.
| 12677080PubMed |
[37] Biegel D, Sales E, Schulz R. Family caregiving in chronic illness: Alzheimer’s disease, cancer, heart disease, mental illness, and stroke. Newbury Park, CA: Sage; 1991.
[38] Canam C, Acorn S. Quality of life for family caregivers of people with chronic health problems. Rehabil Nurs 1999; 24(5): 1992–6, 200.
[39] New A. Strategy for Community Care – The Way Forward. Nationally Consistent Assessment: status update. Canberra: Australian Government, Department of Health and Ageing; 2008. Available at ://www.health.gov.au/internet/main/publishing.nsf/Content/FAC055FFD1FFC973CA25742600032F46/$File/NCAF.pdf [verified 2 December 2009].
[40] Arksey H. Rationed care: assessing the support needs of informal carers in English social services authorities. J Soc Policy 2002; 31 81–101.
[41] Team V, Markovic M, Manderson L. Family caregivers: Russian-speaking Australian women’s access to welface support. Health Soc Care Community 2007; 15 397–406.
| Family caregivers: Russian-speaking Australian women’s access to welface support.Crossref | GoogleScholarGoogle Scholar | 17685985PubMed |
[42] Piercy KW, Chapman JG. Adopting the caregiver role: a family legacy. Fam Relat 2001; 50 386–93.
| Adopting the caregiver role: a family legacy.Crossref | GoogleScholarGoogle Scholar |
[43] Brodaty H, Thomson C, Thompson C, Fine M. Why caregivers of people with dementia and memory loss don’t use services. Int J Geriatr Psychiatry 2005; 20 537–46.
| Why caregivers of people with dementia and memory loss don’t use services.Crossref | GoogleScholarGoogle Scholar | 15920707PubMed |
[44] Rhys Hearn C, Hewitt P, Lindsay-Smith E, Barratt J, Hendrie D, McCarthy S. Review of respite care services provided in the community. Prepared by the University of Western Australia and Queensland Health for the Respite Review undertaken for the Aged and Community Care Division of the Commonwealth Department of Health and Family Services. Canberra: Australian Government Public Service; 1996.
[45] Vecchio N. Understanding the use of respite services among informal carers. Aust Health Rev 2008; 32 459–67.
| Understanding the use of respite services among informal carers.Crossref | GoogleScholarGoogle Scholar | 18666873PubMed |
[46] Witt E, Chenoweth L, Jeon Y-H. Respite services for older persons and their family carers in southern Sydney. Collegian 2004; 11 31–35.
| Respite services for older persons and their family carers in southern Sydney.Crossref | GoogleScholarGoogle Scholar |
[47] Hales C. Crisis or commotion? An objective look at evidence on caregiving in families. Fam Matters 2007; 76 18–23.
[48] Twigg J, Atkin K. Carers Perceived: policy and practice in informal care. Buckingham: Open University Press; 1994.
[49] Walters K, Iliffe S, Orrell M. An exploration of help-seeking behaviour in older people with unmet needs. Fam Pract 2001; 18 277–82.
| An exploration of help-seeking behaviour in older people with unmet needs.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD3MzmtVWjtA%3D%3D&md5=539418cabca54704ebc519f22d6c2405CAS | 11356734PubMed |
[50] Murray SA, Boyd K, Kendall M, Worth A, Benton TF, Clausen H. Dying of lung cancer or cardiac failure: prospective interview of patients and their carers in the community. BMJ 2002; 325 929
| Dying of lung cancer or cardiac failure: prospective interview of patients and their carers in the community.Crossref | GoogleScholarGoogle Scholar | 12399341PubMed |
[51] Hepburn KW, Tornatore J, Center B, Ostwald SW. Dementia family caregiver training: affecting beliefs about caregiving and caregiver outcomes. J Am Geriatr Soc 2001; 49 450–7.
| Dementia family caregiver training: affecting beliefs about caregiving and caregiver outcomes.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD3MzhtVSlug%3D%3D&md5=82850a36a1caa4c18968419b40c0b595CAS | 11347790PubMed |
[52] Kalra L, Evans A, Perez I, Melbourn A, Patel A, Knapp M, Donaldson N. Training carers of stroke patients: randomised controlled trial. BMJ 2004; 328 1099
| Training carers of stroke patients: randomised controlled trial.Crossref | GoogleScholarGoogle Scholar | 15130977PubMed |
[53] Nankervis JM, Waxman P, O’Hara D, Burbidge M. Caring for family carers in general practice. A more proactive approach by GPs would help to ease the burden on family carers. Med J Aust 2002; 177 408–10.
| 12381247PubMed |
[54] Rees J, O’Boyle C, MacDonagh R. Quality of life: impact of chronic illness on the partner. J R Soc Med 2001; 94 563–6.
| 1:STN:280:DC%2BD3MnktVyktw%3D%3D&md5=c80fef9ae3b63827dcedef4d389ec093CAS | 11691892PubMed |
