The hardest thing we have ever done - Palliative Care Australia

Needs and Barriers
Information and support needs
Although the impact of caring has been well reported in the literature, research conducted
for more than a decade demonstrates that caregivers report unmet needs mainly for more
information and support from health care professionals.
In palliative care, four types of family care needs are consistently reported (Kristjanson,
Hudson & Oldham, 2003):
• patient comfort
• information needs
• practical care needs
• emotional support.
Carers desire information about how to provide practical care for a patient, how to ease a
patient’s discomfort, what to expect in terms of both the patient’s and the carer’s emotional
responses to the terminal illness, where and how to acquire practical aids like walking
frames, wheelchairs, hospital beds and so on. The provision of information is therefore
recognised as a central form of support for a caregiver (Hudson et al, 2002).
Hudson, Aranda and Kristjanson (in press) undertook a comprehensive evaluation of the
literature on key information needs as identified by family caregivers. These were reiterated
in focus groups aimed for the development of a nursing intervention to enhance the
guidance and support to lay caregivers of persons dying of cancer at home (Hudson et al,
2002). The key information needs included: preparatory information on typical aspects of the
caring role, caregiver rights, the patient’s medical condition and treatment plan,
acknowledging the difficulties of responding to a relative’s palliative diagnosis, assessment
and management of patient symptoms, hygiene and ambulatory care, financial implications
of caregiving and potential reimbursements, coping skills, how to access resources, problem
solving skills, potential caregiver rewards and satisfaction, enhancing caregiver competence,
respite, signs that death may be approaching, responding to the dying process, and death
and bereavement.
However, the approach adopted to deliver this information to carers is also important
(Hudson, Aranda & Kristjanson, in press). There needs to be an optimal environment for
communication exchange between the health professional and the caregiver. It is also best
to deliver the information in a dose appropriate to the caregiver’s needs; to provide it in a
variety of media (eg verbal, written, audio and videotapes); to tailor it to the caregiver’s
education level and learning style; to provide it at critical caregiving points, such as when
the patient requires hospitalisation, when the caregiver is finding the role difficult, and when
the patient’s death becomes imminent.
To date, there are few family-specific resources available to caregivers such as supportive
information tools in the form of written materials, videotapes and audiotapes (Hudson,
1998; Hudson et al, 2004). Often these are geared towards patients. In the UK, Payne et al
(2000) evaluated the quality and type of information provided in more than one thousand
different leaflets on palliative care. It was estimated that only 40% of the British population
could understand the content and 97% of these leaflets dealt with general hospice
information. Therefore, caregivers need their own educational materials that incorporate
problem solving strategies, how to care for their family member, how to maintain their own
health and how to deal with bereavement (Hudson et al, 2004).
28 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004