Carers UK and the Pumping Marvellous Foundation team up in world’s first cross global study on carers of people with heart failure

Carers UK and the Pumping Marvellous Foundation team up in world’s first cross global study on carers of people with heart failure

3 February 2017

National carers and patients organisations – Carers UK and Pumping Marvellous Foundation are part of a ground-breaking four nation research study to look at the challenges faced by carers of people with heart failure.  The research, which is being coordinated by the International Alliance of Carer Organisations (IACO) will cover Australia, Canada, the United States as well as carers in the UK.


The work is the first multi-national study on carers who are supporting a relative or friend with heart failure and seeks to learn more of the impact of caring for a heart failure patient on the carer such as the physical, emotional/psychological, and social impacts.


A carer is someone who cares, unpaid for a relative or close friend with an illness or disability and can be a spouse, partner, parent, another family member or close friend.  Heart failure is a clinical syndrome in which the heart fails to pump efficiently or it fails to relax and fill efficiently.  Symptoms include breathing difficulties, gathering of fluid in the lower limbs or stomach and extreme lethargy and tiredness.


Emily Holzhausen, Director of Policy and Public Affairs at Carers UK, said “We are delighted to be part of this international study and to be working with the Pumping Marvellous Foundation to see what common issues carers face in the UK and in different countries around the globe.  We will use the research findings to look at what better support families need in their caring role, here in the UK as well as internationally.”


Nick Hartshorne-Evans, CEO and founder of the Pumping Marvellous Foundation, said “This is truly an important international study to assess the impact of caring for a person managing their heart failure. Working with Carers UK we will be able to assess the needs of carers of heart failure patients in the UK as well as attaining a cross country perspective. These will be truly valuable insights.”


We are calling upon carers of someone with heart failure to complete the confidential questionnaire so that we are able to take this valuable work forward.


Carers in those 4 nations interested in participating in the 15 minute questionnaire, can access it at  Results are likely to be available in October 2017.


The survey is being promoted during Heart Awareness Month throughout the whole of February 2017.


IACO is a global coalition of 14 member nations committed to building a global understanding and respect for the vital role of family carers. Recognised as an official Non Governmental Organisation by the United Nations, each IACO member country is represented by a nationally-renowned carer organisation. The coalition meets annually to share best practices, identify global issues, and advocate for family carers.


The research study is funded by Novartis Pharma AG.
For More Information

For information about IACO, please visit  For more information about the study in the UK, please contact Emily Holzhausen, Director of Policy at Carers UK: or

Nick Hartshorne-Evans, Executive Director at Pumping Marvellous Foundation:



Along with Carers UK and the Pumping Marvellous foundation in the UK, the study partners include:   the National Alliance of Care-giving and WomenHeart in the USA, Carers Canada, Carers Australia and Heart Support Australia.


The research is being led by Dr Anna Strömberg, Professor of Nursing Science, Linköping University and Research Co-coordinator and Heart Failure Nurse Specialist, Department of Cardiology, Linköping University Hospital.


The survey is confidential.

Posted Under: Heart failure, Heart failure carers, Press Release