Hospital-based Group Education Program
About the program
Caring for a family member with life-threatening disease is commonly associated with negative physical and psychosocial outcomes. Accordingly, the World Health Organisation and the Australian Standards for Palliative Care Provision highlight the importance of meeting the supportive care needs of family caregivers. An additional hallmark of palliative care is that patients have a choice related to the site of their care. However, most people want to die at home, yet only approximately 25 percent of Australians have a home death.
The likelihood of a home death is significantly increased if family caregivers receive comprehensive preparation and support. Information may help caregivers to solve caregiving problems, decrease their anxiety, and increase their sense of control. The benefits of family involvement in discharge planning have also been reported, yet most family caregivers lack preparatory information and so feel unable to make an informed choice about their role. Family caregivers also report a variety of unmet needs throughout the palliative care episode, despite input from health care services. They have been referred to as ‘hidden patients’. Health professionals also acknowledge that providing supportive information to family members as well as to the patient presents an enormous challenge. The short length of stay (approximately 16 days) in metropolitan palliative care units in Australia adds an additional barrier for family caregiver support.
In summary, although family caregivers are acknowledged as valid service recipients of palliative care, they continue to have largely unmet informational and psychological needs.
Family caregivers have expressed a desire for structured information to better prepare them for their role, whether their dying relative is in hospital, a palliative care unit or at home. Psycho-educational interventions delivered on a one-to-one basis (health professional to caregiver) have demonstrated a capacity to decrease caregiver burden, increase caregiver quality of life, and to increase knowledge of patient symptoms. Although one-to-one interventions are appropriate for some family caregivers, others may prefer a group context.
The advantages of group interventions are that they allow for social comparison (the comparison of one’s situation with a peer group who are experiencing similar circumstances), social support, sharing of experiences and they often require fewer resources. Therefore, we developed and assessed the effectiveness of a group education program, delivered in the in-patient setting, designed to prepare family caregivers for the role of supporting a relative who is receiving palliative care.
This website provides instructions and information on how to run the Hospital-based Group Education Program for Family Carers of Palliative Care Patients.
For further information on the program, email Dr Rachel Zordan or telephone +61 3 9854 1658.
