Helping family caregivers of palliative care patients manage their roles: evaluation of a hospital based group education

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While most people would prefer to die at home, the reality is that about two thirds of people die in in-patient settings, such as palliative care units. A home death is more likely if family caregivers are well prepared and supported in their role. Palliative care services are expected to support family caregivers. Research shows, however, that many family caregivers lack the required information to effectively manage their role. They are also prone to suffer psychological distress while supporting their dying relative. 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. The aim of this project is to develop and evaluate an educational program offered to family caregivers who are supporting a relative who is receiving palliative care in an inpatient setting. The education program seeks to help family caregivers manage their role and to prepare them for the patient�s home care where appropriate. It is hoped that family caregivers who have attended the program will be more competent, better prepared and more informed about their caregiving role. An additional benefit from attending the program will be the opportunity for family caregivers to meet others in similar situations to themselves. Each education program will involve approximately six family caregivers; it will be conducted very soon after their relative has been admitted to the palliative care unit. The program will be of two hours duration (including time for data collection) and will be facilitated by a suitably qualified health professional. Written resources will be provided and caregivers will be given the opportunity to meet with staff from the multidisciplinary team. Referrals for scheduled consultations will be made where relevant. The program will be conducted in three sites (two in Victoria and one in Western Australia) and will be comprehensively evaluated. The caregivers who attend the program will be invited to provide feedback by completing several questionnaires designed to determine the effectiveness of the program. Group education programs of this kind have previously not been rigorously developed and tested. We seek to address this and hope to demonstrate that we can positively influence the family care giving experience.