The hardest thing we have ever done - Palliative Care Australia

Literature Review
Background
Relatives and other unpaid caregivers providing informal care in the home are major sources
of support for people with long-term illness and severe disabilities. With an ageing
population, increasing rates of disability and the growth in community care, the role of the
family caregiver has changed and expanded in recent years. It is not surprising therefore that
family caregiving has become a major focus of research interest overseas and in Australia
(Briggs & Fisher, 2000; Schofield et al, 1997a; Morris et al, 1999; Princess Royal Trust for
Carers, 2003; National Alliance for Caregivers, 1997).
We live longer, but with compromising medical conditions and increased costs of health
care. Consequently, many individuals are finding themselves becoming the primary care
providers for ill and disabled family members. Families are increasingly replacing skilled
health workers in the delivery of unfamiliar complex care. The caregiver role has changed
dramatically from promoting convalescence to providing high technology care and
psychological support in the home (McCorkle & Pasacreta, 2001). There is considerable
evidence in the literature that the burden of caring is adversely affecting family caregivers
who lack adequate resources or who are insufficiently prepared for this new complex role
(Aranda & Hayman-White, 2001; McCorkle & Pasacreta, 2001; Yates, 1999; Kristjanson,
Hudson & Oldham, 2003).
Information in Australia about basic issues such as the range of services available to carers,
patterns of service use and evaluation of existing services is limited (Schofield et al, 1996).
The carer can be seen as holding a unique position of both providing and needing support,
and it has been suggested that it is sometimes unclear who is the ‘patient’ (Harding &
Higginson, 2003). On the one hand, carers are regarded as providers within the network of
care, on the other, when practical assistance is needed to protect their health and wellbeing;
they are regarded as service users and are dependent on means-tested, rationed services
(Lloyd, 2003). Carers tend to be overlooked and often referred to as ‘hidden patients’ (Wiley,
1998). Clearly, carers are still in an ambiguous position in relation to service providers.
Study Objectives and Methods
Despite the significant contribution of carers, there is considerable evidence in the national
and international literature, of the physical, psychological and social morbidity associated
with caregiving, highlighted in studies with negative titles, such as: ‘Caring enough to be
poor’ (Carers Association of Australia, 1997); ‘Ignored and invisible’ (Henwood, 1998);
‘Caregiving as a risk factor for mortality’ (Schulz & Beach, 1999); ‘For love, for faith, for duty,
for deed’ (Cole and Gucciardo-Masci, 2003); ‘Warning - caring is a health hazard’ (Briggs
and Fisher, 2000); ‘Family caregivers and leisure: an oxymoron?’ (Bedini, 2000).
It is in this national and international context that Palliative Care Australia has undertaken a
National Inquiry to gather policy, opinion, experience and research related to the social
impact of unpaid caring for terminally ill people.
The first section of this report focuses on the literature review, which addresses issues in the
wider population of carers, and more particularly those in palliative care. Database searches
from Medline and CINAHL were undertaken in December 2003 and January 2004 using the
following key words: family caregiver, palliative care, terminal care, supportive care,
interventions, carer support, psychosocial support, caring impact, caring burden, caregiver
stress, needs, home care, work conflict, emotional wellbeing, multicultural, diversity, cancer,
rural, information, informal carers, ageing and carers and Indigenous carers. Database
10 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004