Projects and tools

Below we present two examples of our projects in the research program on deafblindness and complex communication needs. 

Functional definition

In the Netherlands, we often use a medical definition of deafblindness to determine whether or not a person can receive deafblind-specific care. Unfortunately, this can lead to situations where a person who still hears or sees “too much” does not qualify for deafblind-specific care. To be more inclusive, a functional definition (FD) is needed to describe impairment in terms of effects on daily functioning, also taking into account the interaction of the auditory and visual impairments.

To establish a FD three studies were conducted. First, a literature review provided insight into existing information on functional definitions in general. Next, a Delphi study was conducted, in which experts with lived experience and professionals who work with people with deafblindness on a daily basis shared their opinions through statements on topics related to hearing and vision impairment. Finally, two consensus meetings were held to discuss topics on which consensus had not yet been reached during the Delphi study and to reach an agreement on a concept FD. The results were finalized and checked by researchers for consistency with all three studies. Click here to view the functional definition and read here about case studies in the Netherlands.

Share a story

Storytelling can provide positive interactions, promote language and communication skills, as well as social and emotional development. Adapted forms of storytelling are necessary to make storytelling more interesting and accessible for people with complex communication needs. Therefore, the Sensory Enhanced Interactive Story Telling (SEIS-T) approach has been developed out of clinical and educational practices, based on scientific insights about interaction, communication, and storytelling for this target group. 

The current study focuses on joint attention and shared enjoyment during storytelling sessions regarding people with Intellectual Disabilities and Hearing Impairment (IDHI) or Congenital Deafblindness (CDB). The aim of this study is to get insight into the specific story elements and strategies that lead to shared enjoyment and joint attention between people with IDHI and CDB and their communication partners. The study has a mixed design of qualitative and quantitative methods: a critical literature review, focus groups, and a multiple-case experiment with 12 dyads. Research findings will be used to give communication partners more detailed instructions on how to interact during storytelling.