Academic journal article Australian Health Review

Is Cancer Care Dependant on Informal Carers?

Academic journal article Australian Health Review

Is Cancer Care Dependant on Informal Carers?

Article excerpt


In the mid 20th century, serious illnesses were treated on a long- term, inpatient basis. Hospital care followed a 'total' care and paternalistic model,wherepatient autonomywas lacking.1Grad- ually, changes in the structure and funding of the Australian medical system have shifted care to the home. One impetus was the growing sentiment that hospitals are too 'impersonal',2 motivating adesire for moreholistic patientcare.3,4Anincreasing distaste forpaternalisminmedical interactions providedasecond force.5,6Accordingly,patientsandfamiliesdemandedtobemore involved in patient care.

With Medicare and improved equity in access to healthcare becoming ethical and political imperatives in Australia, the need to contain medical spending became more urgent and provided the strongest impetus for reform.5,7 However, limiting medical spending is problematic, with calls for more spending coming from both the supply and demand side: increasing specialisation and technology are raising the cost of medical services, more Australians than anticipated rely on Medicare, and an aging population is driving up rates of service use.5,8,9

To balancethemoralnecessity ofuniversalhealthcarewiththe financial reality of restricted public spending, policymakers relocated much caring from hospitals to communities,10,11 with the 'hospital in the home' modelofcareintroduced inAustralia in 1994.12 Families now manage the bulk of care,5 providing emotion work,13 housework, personal care, as well as appoint- ment and transportation management.14-16 This breadth of care may be responsible for the high levels of neglected health problems, depression, anxiety and stress experienced by cancer carers compared with their non-caregiving counterparts.17-20

Few qualitative studies have examined carers' experiences of 'hospital in the home' models of care3 or cancer carers' experi- ences before the palliative stage. This study examines the experi- ences ofinformal carersofaspousewith cancer usingaqualitative approach.


As part ofa larger qualitative study,I distributed questionnaires through Canberra-based cancer services and used snowball sam- pling to recruit a purposive sample of32 participants, aged from 30 to 89 years. This sample included 18 husbands and 14 wives of spouses at various stages of cancer ranging from breast and prostate cancers to rarer cancers. The length of time spent caregiving ranged from a month to more than 12 years.

The governinguniversity ethics committee approvedthe study and I interviewed carers between May 2007 and May 2008. Informed consent was obtained before each interview. All but two carers were interviewed twice, approximately 6 months apart to allow for longitudinal comparison and validation of the researcher's interpretations from the first interviews. Interviews lasted between 20 and 90 min. Carers and patients, especially when they are married, experience cancer as a shared journey.16 However, all but six carers were interviewed individually in this study to ensure that their stories were not marginalised. The remaining six carers (three couples) were interviewed in the presence of their spouses, as they had each had experience as a cancer patient and carer. I thematically coded and analysed verbatim interview transcripts using Nvivo software. An inter- actionist quasi-grounded theory methodology21 facilitated the development of participant-driven themes. Only the most rele- vant data and quotes are presented below, using pseudonyms.


Cancer patient care was poorly coordinated and fragmented. Fragmentation is where health professionals work solely within the confines of their position.22 Observing the impact of this fragmentation on patients, spouse carers felt compelled to coor- dinate care. The medical system seemed to rely on carers to manage patient care, but did not support them in providing this care.

Fragmentation of care

Carers described the current state of care as one where medical staff work hard, but often made errors. …

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