Sense has undertaken research on a range of issues affecting people who are deafblind or have other complex disabilities, from health and social care to communication and Usher syndrome.

The aim of our research is to provide insight and knowledge that helps people, organisations and authorities to make changes that benefit people who are deafblind or have other complex disabilities.

On this page, you’ll find our most recent and relevant research studies.

In relation to deafblindness, there are approximately more than 390,000 people in the UK who are deafblind, with this figure set to increase to more than 600,000 by 2035.

Older people

The late life acquired dual sensory impairment project

This project, funded by Sense, explored the lives of older people with dual sensory impairment who choose to live in their own homes rather than seek residential care. 

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

Funded by Sense and undertaken by the University of Chester, this project explored the difficulties faced by elderly people who chose to continue to live in their own homes.

The research highlighted the potential role of technology in supporting older people to continue to enjoy activities and maintain social interactions.

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

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

Social Prescribing project

The Social Prescribing project was undertaken by a member of the Sense Research team.

The project evaluated the impact of a community-based arts and craft project on a group of socially isolated elderly people with dual sensory impairment.

Rare genetic syndromes

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

This project evaluated the support offered in out patient clinics to 52 patients with rare genetic syndromes that result in dual sensory impairment.

The National Collaborative Usher Study (NCUS)

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

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

Usher Information Survey

The Usher Information Survey was undertaken by a member of Sense’s Research team.

We asked people with Usher syndrome who are in contact with Sense to identify their information needs and advise how the organisation could streamline its services for this group of people.


Joint attention research

This project carried out a systematic investigation of joint attention (JA) in 14 young children with multi-sensory impairment.

JA is a developmental milestone in human communication that typically appears in the first year of a child’s life. The study aimed to determine how much children used other forms of sensory communication in interaction with their parents. 


The Rubella Immunisation project

This Department of Health-funded project was established 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.

The Congenital Rubella Syndrome (CRS) project

The CRS project, funded by Sense, explored the long-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.

Commissioned projects

Sense commissioned five projects that looked at complex disabilities - deafblindness, and sight and hearing impairments, in particular - across a lifetime period.

Practice-based research

Staff who work in Sense services have extensive experience of supporting people with complex disabilities, and their insight and knowledge is extremely valuable.

We support staff to engage in research activity in the context of their practice, as this is likely to yield a rich source of information and ideas for developing larger-scale research projects in the future.

A framework for video analysis of practice

Staff looked at developing good working practices by using video analysis and a framework of seven principles. This helped to provide staff with valuable and precise feedback for evaluation.

The seven key principles that formed the framework were:

  1. What are the aims of the activity?
  2. How did I tell the person that the activity had commenced, and did the person anticipate?
  3. How did the person and I interact during the activity?
  4. How did I use sign, speech, objects of reference, pictures, etc?
  5. How did I use physical guidance, physical and verbal prompts?
  6. Had I given the person time to complete the task?
  7. What was my role in the task? Have I done things for the person that they could do on their own?

Results showed that staff skills improved significantly through self-reflection.


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