'Invisible' homecare workers crucial to end of life care, study finds

Homecare workers supporting those who want to spend their final days at home are an ‘invisible workforce’ whose contributions remain largely unrecognised and unrewarded, a new landmark study from the University of Hull has found. 
 
The study, funded by the National Institute for Health and Care Research (NIHR), explored the experiences of homecare workers who provide care and support to people nearing the end of their lives.  

Researchers found that despite playing a vital role in the delivery of end-of-life care, homecare workers are often overlooked by other healthcare professionals, policymakers and researchers.   

Miriam Johnson, Emeritus Professor of Palliative Medicine and Associate Director of the Wolfson Palliative Care Research Centre, Hull York Medical School at the University of Hull, said: “Increasingly people prefer to die at home and that requires the support of a wide range of professionals.  

“Our research shows that whilst homecare workers are an essential part of that network, often spending more time with people at the end of their lives than any other professional, their contributions are frequently unrecognised and their professionalism, skills and expertise are undervalued.  

“Homecare workers are often the ‘eyes and ears’ of the wider care team, providing complex personal and emotional care, spotting important changes and sharing valuable insights, yet too often they are excluded from key conversations about the people they support. This needs to change.” 

Researchers also highlighted the lack of training in end-of-life care available to homecare workers.  

Liz Walker, Professor of Health and Social Work Research at the University of Hull and co lead on the study with Professor Johnson, said: “The skill, compassion and professionalism homecare workers bring to end of life care can make a profound difference to people and their families. 

“Frequently they are seen – and see themselves – as ‘just care workers’, which can mean missing out on the support, recognition and training they critically need.  

“As a result, many are left underprepared for some of the highly complex situations that they may face. Addressing that gap must be a priority if we are to provide the best possible care for people at the end of life.” 

Working with homecare workers and managers across the country, the research team developed a range of training materials to meet this gap.  

The study brought together a wide range of viewpoints on end-of-life homecare through interviews with 133 people with relevant experience, including homecare workers, managers, health and social work professionals, people receiving care at end-of-life and their family carers, and service commissioners. 

The study, published in Health & Social Care in the Community, was carried out by researchers from Hull York Medical School, the University of Hull, King’s College London, the University of Sheffield and Bradford NHS Teaching Hospital; members of the research team also included people with lived experiences of caring, as part of the homecare workforce or as a family member.  

Visit Wolfson Palliative Care Research Centre for further information. 

Training materials developed by the research team are freely available to homecare services here.

For Media Enquiries: Contact the University of Hull press office on +44(0)1482 465268 or email media@hull.ac.uk