The hardest thing we have ever done - Palliative Care Australia

• providing information and referrals relevant to carers (eg in-home and residential respite
care options, counseling, peer support groups, financial entitlements, self-care and
coping strategies)
• discussing and where appropriate assessing the carer’s own physical and psychosocial
health needs
• engaging other family members in understanding and sharing care responsibilities
• recognising grief and loss on cessation of caring (Payne, 1999; Carers NSW, 1998).
Similarly, Schofield et al (1997b) emphasised the importance of education of doctors, other
health professionals and service providers, given their role in carer access to practical
support. Many high intensity carers see respite care as the most important service.
Information about various respite options, and the availability of affordable, reliable and
flexible programs and day-care arrangements are high priorities in enhancing carer
wellbeing. In addition, carers need support in coping with their role through help lines,
educational programs, support groups, family and individual counseling (Schofield
et al, 1997b).
Given the absence of clear strategies, clinical practice guidelines and policy positions by
governments and peak practitioner bodies, Nankervis et al (2002) suggested using current
schemes that provide an opportunity to focus on carers in general practice. Such
opportunities exist in the Enhanced Primary Care (EPC) Medicare Benefits Schedule, where
the carer is included in care planning and case-conferencing activities. The Better Outcomes
in Mental Health Initiative provides incentive payments for mental health needs assessments
and could include educational material on carer mental health issues. The Commonwealthfunded
Primary Health Care Research Evaluation and Development Strategy provides an ideal
opportunity for collaborative research in this area (Nankervis et al, 2002).
Gaps in Research Enhancing Knowledge and
Support for Carers
A substantial number of studies have identified caregiver needs and psychological morbidity
but the development and evaluation of research-based interventions focused on reducing
negative aspects of caregiving is required (Barg et al, 1998; McCorkle & Pasacreta, 2001;
Hudson et al, in press; Yates, 1999; Harding & Higginson, 2003). Evidence is also required to
support the development of clinical protocols, best practice guidelines and to guide service
developments. However, palliative care research has been fraught with methodological
difficulties such as recruiting patients, reaching sample target numbers, high attrition rates,
rapidly changing clinical situation, limited survival times, ethical dilemmas and the gatekeeping
exercised by professionals (ie reluctance to contribute patients for research studies)
(Palliative Care Australia, 2000; Hudson et al, in press; Harding & Higginson, 2003).
Nevertheless, the scoping study in palliative care research (Palliative Care Australia, 2000)
has called for palliative care researchers to develop “methodological approaches that capture
the complexity of patient and family needs in palliative care and determine the best means
of meeting these needs”.
In the domain of carers, PCA’s scoping study in palliative care research has identified
research priorities in family care during the active palliative care phase and during the
bereavement period. More specifically, research should aim to address the following
questions:
32 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004