In this guest post, Dr Emma Carduff and Dr Anne Finucane, co-authors on a new paper published today in BMC Family Practice explain why it’s important to support the carers of people approaching the end of their lives.
Approx. 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. With increasing numbers of older and frailer people in the population, informal carers will play a vital role in caring for family members as health deteriorates and end of life approaches. In particular, care from informal carers, who are generally family members, is essential for those who wish to be cared for in their own home.
Carers can experience poor physical and psychosocial wellbeing, yet they remain largely unsupported by health and social services. It is essential that carers are supported both to maintain their own health and wellbeing and to care for their family member or friend. However, before they can be supported, carers need to be identified.
What are the barriers to identifying carers?
We synthesized data from three sources – a literature review, a researcher workshop, and focus groups with 15 carers and 8 professionals – in order to answer this important question. Three key themes emerged:
– Carers did not always identify with the term ‘carer’. The transition into caring was often gradual as responsibilities steadily increased. Carers tended to see the caring role as intrinsic to their relationship as husband, wife, daughter, son, or sibling. Over time some carers began to recognise themselves carers, though others rejected the term.
– Carers are engulfed by the caring role. The all-encompassing nature of being a carer, particularly towards 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.
– Legitimisation of carer support needs. Professionals, as well as carers themselves, were not seen to legitimise carer support needs. Furthermore, professionals were perceived to lack 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 to legitimize the role of carers by asking patients if they are caring for someone as part of routine patient assessment.
In addition, carer organisations have a wealth of experience in carer assessment and support. We believe that closer collaborative working between carer organisations and primary care would motivate health care professionals to identify carers and increase their knowledge of carer support services.
Developing an intervention to identify, assess and support carers
The findings described here are based on the first phase of a feasibility study funded by the Dimbleby Marie Curie Cancer Care Research fund. We are currently pilot testing an intervention to identify, assess and support carers in four Scottish general practices. This study will inform the development of a framework to better support carers in primary in care, which we hope to evaluate in a future multi-site study.
This study was funded by a two year research grant from the Dimbleby Marie Curie Cancer Care Research Fund. Dr Emma Carduff and Dr Gill Highet are the project researchers, and Prof. Scott Murray is the primary investigator. 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.