Family carers in palliative care: What is the best evidence...

Family carers in palliative care: What is the best evidence telling us?
Key messages
•
Carers can have different views and experiences about being a carer and providing care [1-3].
For more: See CareSearch Perspectives on Family Carers
•
Some may not be aware that they are caring or do not wish to identify themselves as ‘carers’ [3].
For more: See CareSearch Carers
•
Families and carers are diverse. Ex-spouses, younger family members and siblings may all take on carer roles
[4-6].
For More: See CareSearch Carers and Families
•
Geographical mobility of families in modern Australia means that family ties and social networks are stretched
over distance. Little is known how distance influences caring and carer needs [7-8].
For More: See CareSearch Carers and Families
•
There are a wide range of carer needs and expectations reported in the literature, including:
o
To understand and have education around practical aspects of home-based care such as pain
management, medications and symptom control [9-10]
o
To have patient symptoms effectively managed [11]
o
Appropriately timed information, delivered at the carer’s pace [12]
o
To have a wide range of issues explained – for example, how to cope with prognosis and retain hope
[13]
o
To have practical, emotional, social, relational and spiritual support [14]
o
To have treatment and healthcare decisions respected [11].
For More: See CareSearch Supporting Carers
•
Support groups and supportive care (carer-specific counselling) appear to be beneficial to carers of people
living with dementia, disability and mental illness [12] and of Motor Neurone Disease [13]. How this might
transfer to other palliative populations is unknown.
For More: See CareSearch Supporting Carers
Active research areas and controversies in carer research
•
There is a lack of specificity and consensus in key definitions such as family carer, end-of-life or caregiver
need [2-3]. 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 [3, 17].
CareSearch is funded by the Australian Government Department of Health and Ageing.
•
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 [13, 14, 18-20].
•
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 [1-2].
Caregiver gender also requires further investigation [3,21] .
•
The analysis of carer issues in paediatric palliative care may require particular attention given the complex and
overlapping roles within the family [22-23].
•
Little attention has been given to issues for patients who live alone and are their own carer [24].
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CareSearch is funded by the Australian Government Department of Health and Ageing.
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