Funded projects

The late life acquired dual sensory impairment project

Sense funded a project to assess the lives of older people who choose to live in their own homes rather than seek residential care.

The late life acquired dual sensory impairment project explored why individuals made this decision, and evaluated the relative significance of dual sensory impairment in the context of conditions associated with ageing such as dementia, depression and physical frailty. The outcomes are intended to inform local service providers about the support needs of people with dual sensory impairment who choose to remain living independently.

Download and read The late life acquired dual sensory impairment project executive summary (PDF).

Keeping in Touch with Technology? Using telecare and assistive technology to support older people with dual sensory impairment

This project explored difficulties faced by elderly people who chose to continue to live in their own homes.

The research - funded by Sense and undertaken by a team at the University of Chester - highlighted the potential role of technology in supporting this group of people to continue their preferred activities and maintain their social interactions. Around the same time, the Aktive Project - headed by Prof Yeandle at the University of Leeds - reported its findings on the use of technology by a similarly aged group of people who did not have dual sensory impairment.

Sense approached Prof Yeandle to request that an additional cohort of people with dual sensory impairment form the basis of a further project, funded by Sense, to evaluate the use of Technology by this group of people.

Although initially there was a focus on monitoring technologies, such as pendant alarms, it became clear that some of the participants had much wider experience of using a range of technology in creative ways to support them in overcoming the challenges of age-related dual sensory impairment.

Download and read the Keeping in Touch with Technology Executive Summary (PDF)

Download and read the Keeping in Touch with Technology Final Report (PDF)

The experiences of people with rare syndromes that result in dual sensory impairments in out-patients clinics

This project evaluated a number of specialist clinics in terms of the support offered to 52 patients with rare genetic syndromes that result in dual sensory impairment and the accessibility of the out-patient environment for such people. Moorfields, Great Ormond St, Addenbrookes, The Queen Elizabeth Hospital in Birmingham and Birmingham Children’s Hospital all agreed to participate in the project which was undertaken by a team based at the University of Birmingham and a member of the Sense research team.

Participants were offered face to face interviews that explored their experiences of clinic attendance and then had the option of being accompanied to their next clinic visit so that a researcher could observe any difficulties they encountered with accessing the physical environment of the setting. People with Usher, CHARGE, Alstrom, Bardet-Biedl, Stickler and Wolfram Syndromes participated and this range of syndromes and the range of different clinics allowed the evaluation of different models of out-patient service delivery.

It is hoped that the outcomes of the project will inform clinicians, front-line nursing staff, scientific researchers, service providers and patients about how the environmental infrastructure in out–patients settings can be made more accessible for patients with dual sensory impairment. The project will also support families and patients by providing information, advice and support around the long-term implications of the diagnosis of a rare syndrome in terms of the need to attend a high number of clinical settings in order to monitor any changes in the underlying condition.

Read the experiences of people with rare syndromes and sensory imairments in hospitals and clinics.
Read the Executive Summary for the project.

Joint attention research

Joint Attention (JA) is a developmental milestone in human communication that typically appears around the first year of life. Communication in JA serves as a platform for cultural learning language acquisition and the intentional understanding of the internal world.

This project carried out a systematic investigation of JA in 14 young children with dual/multi sensory impairment (DSI/MSI). It aimed to determine how much these children used other forms of sensory communication in interaction with their parents. 

Download the Joint Attention Research project report (PDF)

Exploring factors that influence the uptake of rubella immunisation in ethnic minority groups (The Rubella Immunisation Project)

This project was established to develop strategies to support primary care staff to improve the service that is offered to ethnic minority groups who are particularly vulnerable to rubella infection and to encourage them to take up the MMR immunisation

A 90 per cent level of uptake of the MMR vaccination will achieve herd immunity in the UK. (This is the level of coverage that you need in a population to prevent the illness from occurring.) It will prevent school-age children from passing German measles (rubella) on to pregnant women and will reduce the number of babies born with congenital rubella syndrome.

The project was funded by the Department of Health. For further information, please read the report.

Download and read The Rubella Immunisation Project report (PDF)

The Rubella Immunisation Project report is also available in plain text and MS Word

The Congenital Rubella Syndrome (CRS) Project

The Long Term Health Implications of CRS project was undertaken by a member of the research team to explore the longer term effects of prenatal exposure to Rubella. The outcomes showed that there was an increased rate of epilepsy, diabetes and early onset of coronary heart disease in this group of people.

This project is funded by Sense.

Download and read the Long term implications of Congenital Rubella Syndrome final report (PDF)

The Long term implications of Congenital Rubella Syndrome report is also available in MS Word.

The identification and assessment of the needs of older people with combined hearing and sight loss in residential homes (The Bupa Project)

This project has developed a screening tool for use by care-workers in residential homes for the elderly to identify the early signs of acquired dual-sensory loss.

The instrument is an adapted version of one that was originally developed by Else Marie Svingen and her colleagues at the Skadelen Centre in Norway.

This project was funded by Bupa.

Download and read the Final Bupa report (PDF)

Download and read the Bupa report research summary (PDF).

The final report is also available in MS Word

The National Collaborative Usher Study (NCUS)

This study was initiated at Moorfields Eye Hospital in 2003 and was funded by a Big Lottery grant that was awarded to Sense.

The Institute of Child Health, Institute of Ophthalmology, The Ear Institute at UCL and the Wellcome Trust Sanger Institute were also part of the study, which aimed to map the genetic markers of Usher syndrome and other related cilliopathies that result in dual sensory impairment.

You can read a summary of the findings of the study,

An account of the genetic inheritance of Usher and

A description of some of the assessment techniques routinely undertaken at Moorfields.

Social Prescribing project

The Social Prescribing Project was undertaken by a member of the research team to evaluate the impact on wellbeing of a group of socially isolated elderly people with dual sensory impairment being offered the opportunity to engage in community based craft project.

Download and read the Social Prescribing Project research paper (PDF)

Usher Information Survey

The Usher Information Survey was undertaken by a member of the research team who asked people with Usher Syndrome who are in contact with Sense to identify their information needs and advise how the organization could streamline its services for this group of people.

Download and read the Usher Information Survey findings (PDF)

First published: Wednesday 23 May 2012
Updated: Thursday 11 August 2016