Carers are an integral part of Australia's health system and are the foundation of our aged, disability, palliative and community care systems. [12,13] Carers may be unprepared and significantly unsupported for the important contributions and demands required to care for a person at the end of their life. Palliative care provision needs to recognise and respond to carers’ needs.  The family and the community more broadly may also need information about palliative care and death and dying.
The following is a summary of the research which relates to information and education for people with life-limiting conditions, their carers, family members and the general public about life-limiting conditions and palliative care. Education programs are diverse and may be targeted at the person undergoing palliative care or the people who care for them. Programs can be categorised [4,5,14] as:
- Educational – information and accessing information or services
- Skill-building – learning skills of care
- Coping-enhancement – learning ways to manage the challenges of terminal illness.
Training and education programs described in the literature are distinct programs or a component of palliative care or end-of-life care. Information or training can be presented in a variety of formats and in a variety of settings [1-5,7,14] which can make evaluation and comparison difficult. Carers may wish to participate in education or training sessions but may not be able to due to many reasons. [1,3] Home telehealth, e-learning and information and communication technology (ICT) might allow more carers to access training and education but these may require training in the use of the technology and may not be a medium of choice for older people. [7,10,11] Availability of offline support may help to retain carer interest and engagement with online education.
The included systematic reviews are of variable quality and include research of variable methodological design and rigour. Research in this area is growing in quality and quantity  but very little focuses its attention on palliative care for older people.
Page updated 27 May 2021