The hardest thing we have ever done - Palliative Care Australia

• How is family-centered care practiced in the delivery of specialist palliative care?
• Can a targeted support and education program improve the experience of family
members caring for a dying person at home?
• What is an appropriate system of screening for anxiety and depression in families of
people receiving palliative care?
• Does improving the support offered to family members during palliative care improve
bereavement outcomes as measured by levels of anxiety, depression and anger?
Many publications recommended improved support for families but few supportive palliative
stage family interventions have been conducted and rigorously evaluated. In a critical review
of supportive interventions for family caregivers of palliative stage cancer patients, Hudson
(2004) advocated incorporating recommendations from intervention studies conducted with
general family caregiver studies, “as lessons learnt would assist intervention development
related to palliative care families”. The following strategies for the inception and evaluation
of support-focused interventions were suggested:
• testing interventions with palliative care families, where pertinent, via randomised
controlled trials with a large enough sample size to conduct inferential statistical
analyses
• incorporating multiple rather than single approaches into interventions, as these have
been more successful in producing positive caregiver outcomes
• focusing on support strategies which minimise the negative psychosocial impact of care
rather than the current tendency to focus on the task-oriented aspects of care
• targeting interventions toward carers who demonstrate a need for it – therefore,
interventions would benefit from measuring very specific as well as global dependent
variables, which means that researchers screen participants for variables related to the
intervention
• developing and testing interventions for individuals as a priority, as according to metaanalyses
of the effectiveness of caregiver interventions, individual interventions proved
to be more successful than group interventions – the supporting argument is that
caregivers who attend groups may represent those least in need of interventions, having
demonstrated their ability to use social support and/or access respite care in order to
attend group programs
• adopting a participatory research strategy – this means engaging the family members of
palliative stage patients at the design stage of interventions and using focus group
interviews as a vehicle to achieve this
• involving caregivers independently of patients, as caregivers’ perception of need may be
different
• adopting longitudinal approaches to examine the impact of health professional strategies
aimed at enhancing caregiver support needs at different time periods
• using longitudinal evaluation of interventions with palliative families after patient death,
for example via a baseline assessment when the patient is referred for palliative care,
after the intervention and then during bereavement.
In a review of cancer care literature specific to caregiver interventions, Pasacreta and
McCorkle (2000) and McCorkle and Pasacreta (2001) also reported limited research on
evidence-based interventions aimed at caregivers. The authors concluded that “the notion of
identifying caregivers who are at risk of having problems in specific areas and tailoring
interventions to their special needs seems to be an important direction for research as
THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
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