Telecare: Researching the impact on carers and care workers

Professor Sue Yeandle

This article was prepared by Mike Clark, co-project lead for WSDAN, and is based on the presentation made by Professor Yeandle to the WSDAN regional event on the 11 June 2009 at the Leeds Marriott Hotel. The presentation can be accessed on our past events archive.

The United Kingdom leads the world on the evidence base for the role of carers in the health and social care system with over 30 years of research.

Numerous academic and government reports conclude the following.

  • Carers – unpaid family and friends – are pivotal to current system
    • Research has highlighted the scale, contribution, centrality of carers
    • Pressures on carers threaten sustainability of their care – they pay financial, health and social exclusion penalties for the care they give
  • Demographic/labour force change
    • Worldwide population ageing is bringing a huge shift in younger/older balance
    • Longevity is intrinsically linked to the rise in prevalence of disability/long-term conditions
    • Employment across ‘working age’ essential to raise tax/fund pensions
  • Already 75 per cent of  carers are of ‘working age’
    • Combining work and care is crucial for personal/family well-being
    • Employer/managerial support and flexibility is essential
    • Inadequacies/inflexibilities in services add pressure and risks
  • Home care arrangements have been struggling to adapt
    • Recruitment and retention continuing problem for providers
    • ‘Short bursts of care’ approach wasteful of resources
    • More flexible care worker roles require training, technology and support

The National Carers Strategy (Department of Health 2008) considered that carers should:

  • have access to the integrated/personalised services they need
  • be respected as expert care partners
  • be able to have a life of their own
  • be financially supported, not forced into hardship
  • be supported to stay mentally/physically well and treated with dignity
  • when young, be protected from inappropriate caring roles.

Professor Yeandle argued that it is critical that potential and actual benefits to the health and social care system from telecare and telehealth are identified through mapping and collection of evidence alongside the major demonstrator trial taking place. Pressures on carers threaten sustainability of their care. Around 4.27 million carers in the 2001 census support a total population in poor health of around 6–7 million people.

The demographic change in the United Kingdom is a worldwide issue – it is difficult to import solutions as other countries all face the same challenge. There is a profound change in the balance between younger and older people – that is where carers really matter. 75 per cent of carers from the 2001 census are people of working age. Combining work and care is crucial for personal and family well-being. Inadequacies in services add pressures and risks.

Reshaping of health and social care is also very important – it is an integral part going forward – not displacing human touch but freeing up the resource that we need for the human dimension to care. We need to be freed up from the inefficiencies.

Home care systems are struggling to adapt. They are struggling to retain and recruit staff. For instance, the issues of short bursts of care – staff travel to a user then there is hardly any time left to spend there. If we are going to develop enhanced roles, telecare calls for that, it requires training.

How can telecare, telehealth and more broadly ICT based solutions sustain and support working age carers?

Professor Yeandle argued that a new social contract is needed for the carer that is fit for the 21st century and built on ethical principles – inclusion, equality and human rights – for which there is a broad consensus. It is important to link systems to the economic tax, benefits and welfare systems.

She considered that in the future our care and support system needs to deliver fairer and better support for more people with increasingly complex needs. This is a big challenge. She continued, it is going to need to deliver job and career designs and enabling technology that makes combining work and care possible. So the telecare solution is partly about enabling care to be sustained that is not a cost to the system because unpaid carers give that care into the collective social good. Carers are not taking it out, they are giving it. We must sustain that contribution because we know how much pressure our budgets are under. We want more reliable and flexible infrastructure in all localities because that is the key thing that carers have told us in our studies. They need better information about how they can get help. They want it to be reliable and they want it to be flexible. They want their systems to be tailored for the varied needs of an increasingly diverse and probably more demanding population. We have a significant and growing diverse population in this country whose needs will need to be met through technology and support.

Although telecare and telehealth is important, we also need to embrace the social networking and information systems that can make that possible too.

Other countries (eg, Spain, Germany) are very interested in what the UK is doing. They have been interested in how we have moved forward with the Preventative Technology Grant. New support is emerging for carers online – some carers are benefiting from this and are better able to manage care. The evidence base is growing but many public funders are still nervous about the case for major budget shifts. There is some interest with the home care sector but they are not fully engaged with reviewing potential opportunities. Key parts of the system need be on board. The pace, scale and range of developments is constrained by funding, by expertise that remains quite narrow and limited awareness.

Carers are going to be really important in stimulating demand and take-up for telecare. It falls to the family to try and help them. Carers are pivotal and will advocate for change. They need to be convinced of the benefits for telecare. Care workers are almost completely untapped – we must listen to them, we must engage with them and we must enlist in taking this forward once convinced.

Researching the benefits of telecare to carers

Professor Yeandle is currently leading a review on the carer benefits of telecare for the Scottish government and Carers Scotland. Positive evidence is emerging of carers whose anxiety and stress has been significantly reduced with life enhancing benefits. There is evidence of carers whose sleep patterns have improved. The research includes carers of children with learning disabilities and complex conditions. There are potentially big benefits for carers. Their relationship with the person they care for also improves. It gives people more freedom to do other things – to remain in or go back to work. In the Scottish system people also feel positive about equipment installation and review – they are surprised about how easy it is. They are surprised that it does not seem to cost very much.

There are, however, issues to address and explore – awareness of telecare options and access to enhancements and refinements that people may need later is very limited. Carers do not feel that they are being updated and getting the best of the technology. The adequacy of and streamlining of the carer, the cared for and the paid professional health and social care worker is still not resolved.

Important questions are:

  • when and how will carers interest take off?
  • will our systems be able and ready to deliver and respond?
  • can we scale up, how do we do it?
  • can and should a private market for telecare and telehealth be stimulated? 

Finally, she issued a plea for people to think about best evidence in all parts of the system. If something is not working, it is important to found out why. Research access to both carers and care workers is particularly difficult at the moment if the research is not planned from the beginning of a project. It is important to think about the impact on quality and generalisability of data collected, and to have qualitative and longitidual studies to capture impacts for all involved in the care journey. There needs to be studies around support for learning disabilities and mental health as well as for children and adults becoming independent. These should all be focused on promoting sustainability, dignity, independence and a life of their own. There should be evidence from home care providers especially in the independent sector on how their role with telecare is affecting them including social networking and online systems. Care workers should be updated on telecare. Updating of staff, particularly in the independent sector, can have an impact on job satisfaction. We need to cascade out how telecare works for carers, the cared for and paid care workers with better quality at lower cost.

Notes:

Sue Yeandle is Professor of Sociology and co-Director, CIRCLE, University of Leeds. Sue has extensive research experience on carers and care workers in the United Kingdom and currently is working with European partners on the role of telecare and its impact on the health and social care system. In addition, she is involved in a project in Scotland to look at telecare and its potential impact on carers.

References

Department of Health (2008). Carers at the Heart of 21st Century Families and Communities: a caring system on your side, a life of your own. London: Department of Health