A research strategy to explore the impact of deafblindness across the lifespan1
Dr. Anna McGee
In July 2010 Sense 2 decided to establish a team to design and implement a series of research projects exploring the impact of deafblindness upon individuals across the lifespan. The underlying principle of this initiative was that deafblind people develop through the relationships that they have with their families, their peer groups and the organisations who provide services for them so it would be valuable to understand how interactions with these groups of people could be facilitated. A small team was recruited to complete externally funded projects, to establish new projects to be funded by Sense that would be undertaken by university teams, and to support service based staff to undertake projects in the context of their usual work duties. Each member of the team had a different area of expertise so that all aspects of congenital and acquired deaflindness could be addressed. They included a developmental psychologist, a vision scientist, a sociologist with expertise related to older people and one research officer was herself deafblind as the outcome of Congenital Rubella Syndrome (CRS). The team also had access to a technology officer who is an audiologist, so the range of skills would support a wide range of research activity.
Two projects had already been funded from external sources before the research team was established. The Rubella Immunisation Project3 (funded by the UK Dept. of Health) evaluated perspectives amongst ethnic minority groups of the MMR immunization. The results indicated that groups of people who had decided to settle in the UK from a wide range of countries all intended to take up the opportunity to immunize their children, regardless of whether there had been a similar programme in place in their country of origin, although they did find the schedule of immunization complicated.
A project to explore awareness of Dual Sensory Impairment in Elderly People living in Care Homes, funded by BUPA4, adapted a screening tool that had originally been developed at the Skadelen Centre in Oslo Norway. Of 100 residents, 15 were found to have dual sensory loss that had not been identified. Sense then developed a training programme to increase the awareness of care home staff to the need to identify dual sensory difficulties in this group of people using the screening tool.
Whilst these projects were being completed, a series of meetings with academic research teams identified five new projects that focused on issues of dual sensory impairment across the lifespan. The aim of these projects was to alert the UK research community to the impact of dual sensory impairment across the lifespan so the initial projects stretched from infancy to old age in order to create a map to represent the life experiences of deafblind people. The primary intention was to support individuals themselves, along with their families, to identify how they could achieve their potential.
The new projects included:
• A project that explored parent/child joint attention in the tactile modality which aimed to identify interaction strategies that would support parents in establishing the optimal communication relationship to consolidate and extend the social development that underpins language and cognition.
• The Sense Assessment Toolkit for Multi-Sensory Impaired (MSI) Children was intended to collate a model for the techniques and approaches used by the Sense Children’s Services team and to provide an evidence base for the value of the Sense Assessment in identifying the optimal learning environment for deafblind children in their early years of education.
• An Evaluation of the Impact of Usher Syndrome on Life Planning explored how the self-identity of people with Usher Syndrome was altered following their diagnosis and mapped the impact that this had upon their life plans.
• A project assessing Elderly People with Acquired Dual Sensory Impairment (DSI) living in the Community examined the lives of a similar group of people to those who had participated in the BUPA Care Homes project but who had continued to live in their own homes. This project explored individual’s decision making process in relation to seeking residential care and evaluated the relative significance of dual sensory impairment in the context of conditions associated with ageing such as dementia and physical frailty. The outcomes were intended to inform local service providers of the support needs of people with dual sensory impairment who chose to remain living independently.
• The potential use of Social Haptics5 by service based staff to extend the range of communication techniques for deafblind people was the fifth project to be undertaken as part of the first group of research projects
The second research strategy (2013) adopted a slightly different approach to identifying projects in that a number of teams within Sense were asked to identify issues they thought warranted further exploration. This led to a further five projects being designed to address these issues and extend the findings of the first set of projects. The new projects included:
• A project to evaluate possible diagnostic confusion between deafblindness and autism
• The Rare Syndromes Clinic project which explored the experiences of people when attending specialist hospital clinics as a result of genetic conditions that result in dual sensory impairment
• The role of technology in supporting elderly people with DSI to stay in their own homes
• The financial outcomes for deafblind people who are being transferred from one benefit (Disability living Allowance or DLA) to a new benefit (Personal Independence Program or PIP)
• How to assess the optimal school setting for MSI children
Two other streams of research activity occurred in parallel with the external projects established in the second research strategy:
Firstly, some smaller scale projects were undertaken by individual members of the research team. These included:
The Long Term Health Implications of CRS project which showed that there was an increased rate of epilepsy, diabetes and coronary heart disease in this group of people.
A project to assess the use of Monitoring Technology in Sense Residential Services that highlighted the need for training for staff to understand the potential benefits of such technology.
The Social Prescribing Project evaluated 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.
The Usher Information Survey asked people who were in contact with Sense to identify their information needs and advise how the organization could streamline its services for this group of people.
The Communicator Guide Project explored the hopes and expectations of people with dual sensory impairment at the point they seek the services of a communicator guide and then explored their perspectives after the implementation of the service to assess the impact of having access to such support.
The second type of activity was specifically devised to recognise the extensive experience of people who deliver direct services to deafblind people within Sense. Their insights represent a significant contribution to evidence based practice across the organization so a range of projects were undertaken by small groups of staff under the supervision of members of the research team. These projects included:
• Use of Video as a Training Tool for Sense staff
• Communication Concepts
• Impact of Bereavement on Sense staff
• Living Full and Active Lives
• Reduction of Medication in Sense Residential Services
• Facilitating friendships between Deafblind people
• Use of Personal Symbols
• Use of Sensory Rooms
• Inclusion of Deafblind people in staff recruitment
• Safeguarding people with little or no formal communication
Most of these projects are now completed and some have been presented at national and international conferences. The results of the scheme were intended to inform both service delivery and training within the organization.
The wider outcome of Sense’s initiative in establishing a research function has been the creation of a UK network of academics who will now submit grants to external funding bodies to support research related to dual sensory impairment. This demonstrates that Sense has acted as a mechanism for influencing research that represents the perspectives of deafblind people within the UK. Members of UK based networks of other charities have also become more aware of issues related to dual sensory loss and this has led to collaborative projects between organisations that take a person-centred perspective, as participants are no longer viewed in the light of only one of their areas of difficulty.
Some of the Sense projects have also been replicated and extended by teams of researchers from settings outside the UK which indicates that there is an emerging international network of researchers who are now exploring collaborative opportunities through the new DbI Research Network.
Within Sense the practitioners who undertook the practice based projects have increased their understanding of the value and significance of research and it is hoped that this will in time lead establishing a more robust evidence base for the value of the direct services that Sense offers.
One unexpected outcome of the dissemination of Sense’s research activity at academic conferences has been the involvement of 2 MSc students and one PhD student who are now undertaking post-graduate research related to dual sensory impairment. As these individuals will become the next generation of academics, supporting them at this early stage in their careers is viewed as an investment by Sense in the future availability of researchers who are aware of dual sensory impairment.
What comes next?
Three of the projects established in the 2013 strategy are completing by the end of 2015 so these findings will add to the growing pool of evidence of the impact of dual sensory impairment across the lifespan.
A new proposal for a project that builds upon the outcomes of the Late Life Acquired Dual Sensory Impairment project (which itself was an extension of the BUPA Care Homes project) has been submitted to an external funder. The data from the original projects indicate that there may be a different pattern of functional loss in terms of Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL) related to emerging dual sensory loss or the early impact of dementia. It seems that people in the former group inhibit some of their behaviors as a result of concern about their hearing and vision, whereas individuals in the latter group become disinhibited as a result of the loss of the sense of self that is characteristic of dementia. Discussions with Age UK about a collaborative project have been positive so the proposal is to compare the pattern of loss of ADL and IADL in a group of elderly people with dementia (recruited though Age UK branches) to the pattern of loss in elderly people with dual sensory impairment (recruited through Sense) with a view to developing a Screening Tool to support family members to identify the potential underlying reason for any changes in behavior they observe in their elderly relatives.
The initiatives described in this paper show how one organization responded to the need for robust evidence related to the impact of deafblindness across the lifespan. Undertaking this range of research has contributed to our understanding of the lifelong experiences of people who are deafblind and their families, and has demonstrated how organisations can use research to support deafblind people to achieve their potential.
For more information, contact Dr. Anna McGee, Head of Research, Sense
1 Presented as a workshop at the 16th DbI World Conference in Bucharest, May 25–30, 2015
2 Sense (www.sense.org.uk) is a large corporate member of DbI