Learning disabilities (LDs) affect around 1.5 million adults in the UK, with 828,000 adults in England. Of this group, the Department of Health estimates the majority have mild to moderate learning difficulties with around 10% being severe of profound (Emerson, 2009). People with LDs have cognitive impairments and have higher rates of chronic diseases and conditions such as heart disease, hearing and vision disorder, and cancer (Cooper et al. 2006; Department of Health (DH), 2013; Hempe et. al., 2010).
Apart from the diseases and conditions they may have, people with mild LDs can talk easily and look after themselves, but take longer than usual to learn new skills. In the UK, most LD adults are supported to live in the community.
To help LD individuals to live more easily and to receive healthcare in the community, Telehealth and telecare are now increasingly being implemented (NHS, 2014; Perry et al., 2009). Telecare is the use of home sensors or alarms that facilitate an individual living independently, e.g., medication reminder or fall detector (DH, 2009). Whereas, telehealth uses information and communications technology (ICT) to transmit health information and deliver health services. This can be from a health monitoring device, e.g., blood pressure monitor, or through direct correspondence with a patient (DH, 2009).
For LD adults, telehealth tends to be used to treat and monitor conditions such as chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), epilepsy, and diabetes. There is increasing conjunction between telecare and telehealth (TcTh), as a ‘telehealthcare’ package available in a person’s home. In Cambridgeshire, telecare is paid for by Cambridge County Council (CCC) and telehealth is paid for by a hospital. The benefits of using TcTh include cost-effectiveness; providing an independent life; reducing anxiety caused by visiting hospital; reduced mortality rates; and assisting clinicians to be proactively involved in the ongoing wellbeing of their patents and manage timely interventions (NHS, 2014; SEQOL, 2013).
However, there are many challenges for people who use TcTh. The multi-functionality and complexity of interfaces can alienate users, and the usability of telehealth is far from being satisfactory. LD adults have difficulty learning to use devices, especially if the operations are challenging to follow or perform. Failure to meet their requirements and poor interface design may lead to fatal accidents, as well as ineffective use, or misuse, all leading to poorer care and outcomes.
Although there are larger studies on TcTh, such as Doughty et al. 2007 and Grady et al (2014) looking at general TcTh, as well as some reports from organisations such as the NHS, WHO, and DH providing basic information and introduction to TcTh and further reading, there is limited work looking at LD adults using TcTh. Studies of note are Taber et. al. (2010) who compared the effectiveness of standard care and telecare services with consumers with LDs; Perry et. al. (2012) evaluated whether telecare effective intervention to people with LDs; and Claire et. al. (2014) studied the barriers to telecare use for all categories of users. However, apart from these notable studies, other research on LD adults using TcTh has been poorly systematic. Furthermore, even though the papers listed above are comparably good, there is no comprehensive research studying the interaction between LD adults and the whole using procedure, involving direct support staff or health professionals/nurses. Additionally, there is no research investigating manufacturers/ designers design of TcTh for LD adults.
Therefore, there is a need for a much more in-depth investigation and analysis. Auxergo is working on this project to support companies to design and innovate better telehealthcare products.
Potential service providers in Cambridgeshire
1. CHS group (Histon, CB24 9ZR): http://www.chsgroup.org.uk/
2. Demensions (Swavesey, CB24 4QJ): http://www.dimensions-uk.org/about-us/
3. Guyatt House (Swaffham Prior, CB25 0JT): http://www.guyatthouse.co.uk/
4. ACH (Littleport, CB6 1PN): http://www.achuk.com/
5. La Marsh (Cottenham, CB24 8TE): http://www.carehome.co.uk/carehome.cfm/searchazref/10001505LAMA
Bentley, C. L., Powell, L. A., Orrell, A., & Mountain, G. A. (2014) Addressing design and suitability barriers to Telecare use: Has anything changed? Technology and Disability, 26(4), 221-235.
Cooper, S. A., Morrison, J., Melville, C., Finlayson, J., Allan, L., Martin, G., & Robinson, N. (2006). Improving the health of adults with intellectual disabilities: outcomes of a health screening programme after 1 year. Journal of Intellectual Disability Research, 50(9), 667-677.
Department of Health. (2009). Whole Systems Demonstrators: An Overview of Telecare and Telehealth.
Department of Health (2013). Learning Disabilities Good Practice Project. The Stationery Office.
Doughty, K., Monk, A., Bayliss, C., Brown, S., Dewsbury, L., Dunk, B., ... & Ward, D. (2007). Telecare, telehealth and assistive technologies-do we know what we're talking about?. Journal of Assistive Technologies, 1(2), 6-10.
Emerson, E. (2009). Estimating future numbers of adults with profound multiple learning disabilities in England. Tizard Learning Disability Review, 14(4), 49-55.
Hempe, E. M., Dickerson, T., Holland, A., & Clarkson, P. J. (2010). Framework for design research in health and care services. In Exploring Services Science (pp. 125-135). Springer Berlin Heidelberg.
Krippendorff, K. (2012). Content analysis: An introduction to its methodology. Sage.
NHS (2011). Better health and wellbeing for people with a learning disability and their families: The vision for achieving the best, together in the east of England 2011-2021. East of England
NHS (2014). Improving outcomes for patients with Learning Difficulties through better remote management of health and well-being. England.
Perry, J., Beyer, S., & Holm, S. (2009). Assistive technology, telecare and people with intellectual disabilities: ethical considerations. Journal of Medical Ethics, 35(2), 81-86.
Perry, J., Firth, C., Puppa, M., Wilson, R., & Felce, D. (2012). Targeted support and telecare in staffed housing for people with intellectual disabilities: Impact on staffing levels and objective lifestyle indicators. Journal of Applied Research in Intellectual Disabilities, 25(1), 60-70.
SEQOL (2013). Using telehealth to support self-care for people with long-term conditions and learning disabilities. Swindon