How healthcare professionals can better identify and support informal carers
Dr Anne Finucane (right) and Professor Scott Murray, co-authors of a new study funded by Marie Curie, explain why it is important to support people caring for those at the end of their lives.
Around 10% of the UK population have an unpaid caring role for a family member or friend. Many of these carers make a significant contribution to supporting people who are approaching the end of their lives. In particular, care from informal carers, who are generally family members, is essential for those who want to be cared for in their own home.
Carers can experience poor physical and psychosocial wellbeing, yet they get little support from health and social services. It is essential that carers are supported to maintain their own health and wellbeing and to care for their family member or friend. But, before they can be supported, carers need to be identified.
Read the study
We looked at data from three sources – a literature review, a researcher workshop, and focus groups with 15 carers and eight professionals –to answer this. Three key themes emerged:
What are the barriers to identifying carers?
- Carers did not always identify with the term ‘carer’. Carers tended to see themselves simply as a husband, wife, daughter, son, or sibling. Over time some carers began to recognise themselves as carers, though others rejected the term.
- Carers are engulfed by the caring role. The all-encompassing nature of being a carer, particularly for someone at the end of life, meant that carers often feared leaving the cared for person and had no time to prioritise, or seek support for, themselves.
- Carers’ needs are legitimate. Professionals, as well as carers themselves, did not always appreciate that carers had legitimate needs of their own. Professionals lacked knowledge about available services for carers, and carers thought there was nothing for them.
How can we identify and better support carers?
Carers need to be encouraged to see themselves as carers, as well as relatives or friends, of the person they’re caring for. This could be done through promotional material and public health interventions that raise the profile of carer support needs more generally.
Primary care professionals can also help by asking patients if they are caring for someone as part of routine patient assessment.
Developing an intervention to identify, assess and support carers
This study was just the first phase of a larger proje
ct funded by the Dimbleby Marie Curie Cancer Care Research Fund. We are currently testing an intervention to identify, assess and support carers in four Scottish general practices.
This study is funded by a two-year research grant from the Dimbleby Marie Curie Cancer Care Research Fund. This is a collaborative project involving the Primary Palliative Care Research Group at the University of Edinburgh’s Centre for Population Health Sciences, NHS Lothian, Voices of Carers Across Lothian and Marie Curie Hospice Edinburgh.