Key messages
There are a wide range of carer needs and expectations reported in the literature, including:
- To understand and have education around practical aspects of home based care suchas pain management, medications and symptom control [1-2]
- To have patient symptoms effectively managed [3]
- Appropriately timed information, delivered at the carer’s pace [4]
- To have a wide range of issues explained – for example, from how to cope with prognosis and retain hope [5]
- To have practical, emotional, social, relational and spiritual support [6]
- To have treatment and health care decisions respected. [3]
What is known
Home is typically identified as the preferred place of care however some carers can feel obligated to provide home care. [7] One review has noted the impact that caring has on impact of the home as a setting for end-of-life care. [8]
Caring appears to be associated with needs and /or impacts associated with psychological issues for the carer, financial and occupational difficulties and patient care difficulties. [9]
There is good quality evidence that the use and availability of respite care for frail older adults and for those with advanced life limiting illness, limits the risk of depression and burden in carers. [10] However, the interpretation of this evidence is conflicting and some authors report ambiguous or ‘only some’ evidence of the efficacy of respite care. [11-12] Disparity in the reporting of evidence may be due to the varying types of respite available and the varying needs of carers. [13]
Good quality evidence suggests that long-term education of the carers of people living with moderate or severe dementia decreases the risk of carer burden and depression. This is true only when the education is combined with psychosocial support and specific, tailored skilled advice. [10-11]
A wide variety of instruments used in assessing family caregivers are available although there has been variable testing of their psychometric properties. [14-15]
Evidence suggests that health professionals could support carers by providing education on practically focused issues such as nursing care and medication. [1] Effective communication is fundamental to quality care of the patient and the carer in the community [16].
Support groups and supportive care (carer-specific counselling) appear to be beneficial to carers of people living with dementia, disability and mental illness [11] and of Motor Neurone Disease. [17] How this might transfer to other palliative populations is unknown.
Telehealth has been identified as an approach that could support carers [18-21]
Active research areas/Controversies
- There is a lack of specificity and consensus in key definitions such as family carer, end of life or caregiver need. [9, 22] Greater definitional clarity is needed.
- More research is needed to understand issues around carer employment across the economy and how this impacts on those living with life limiting illness. [9, 23]
- There is wide agreement that more research on a finer and wider range of issues and outcome evaluations are needed in order to determine the efficacy of various interventions for the different types and ages of carers. [6, 9-10, 12, 22, 24-25]
- More research is needed to clarify needs of family and carers who do not live nearby. More research is needed into the needs and issues regarding specific caring groups, such as Indigenous and CALD carers. [9-10] Caregiver gender also requires further investigation. [9, 26]
- The analysis of carer issues in paediatric palliative care may require particular attention given the complex and overlapping roles within the family. [27-28]
- Little attention has been given to issues for patients who live alone and are their own carer. [29]