deafblindness and complex communication needs

Deafblindness is a unique disability, a combination of visual and hearing impairment. The two impairments together increase the effects of each. The combination of dual sensory loss leads to unique problems in communication, mobility and access to information.

There are many possible causes of deafblindness. Some babies are born deafblind, but in many cases the hearing and/or vision loss occurs later in life. Causes of deafblindness include genetic conditions, such as Usher syndrome, an infection picked up during pregnancy, such as rubella (German measles), cerebral palsy – a problem with the brain and nervous system that mainly affects movement and co-ordination and age-related hearing loss. Deafblindness from birth is known as congenital deafblindness. Deafblindness what is developed later in life is known as acquired deafblindness.

People with complex communication needs have multiple challenges. In addition to a language development disorder or hearing loss, they also have an intellectual and physical disability, for example. Psychological problems are also common.

Communication is not always a matter of course for people with complex communication needs. That is why Kentalis investigates with a multi-disciplinary team which form of communication suits someone. This depends on the situation, limitations and possibilities of the person. You can learn different forms of communication, such as:

• Sign Language

• Spoken language supported by gestures

• Fingerspelling in the air or hand

• Communication with pictos

We believe that everyone is entitled to customized communication. That is why we often work with the Total Communication methodology. This means that we communicate in a way that suits a child or adult and, if necessary, use different forms of communication and tools. Total Communication increases independence, self-reliance, interaction and self-esteem.

Children with complex communication needs go to special education. They receive customized education. The teachers match the level, communication possibilities and talents of the child. Education is specialized and regularly one-on-one. Education and care staff also work closely together here.

Some children, adolescents and adults with a communicative multiple disability need specialist care in daily situations. That is why Kentalis has special residential groups (24-hour care) and day-care groups.

Alternative ways of communication are crucial to persons with deafblindness or complex communication needs. Kentalis in the Netherlands is an expert in those means of communication and accessibility, always together with the concerned person and adopted to his/her abilities and talents. The goal is self-determination in organizing their own lives and participate in society. We develop and share our knowledge with other organizations, both in the Netherlands and abroad. 

Kentalis is the treasure holder and corporate member of Deafblind International (DbI).

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.

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.

This section features a selection of (scientific) publications on complex communication needs, published by Kentalis researchers. Click on the article link to read the full publication.

Damen, Saskia, Ilse Van Zadelhoff, en Corrie Tijsseling. ‘Experiences of families involving a parent with progressive deafblindness’. British Journal of Visual Impairment, 2022, 02646196211059751.

Wittich, Walter, Jude Nicholas, en Saskia Damen. ‘Living with deafblindness during COVID-19: An international webinar to facilitate global knowledge translation’. British Journal of Visual Impairment 40 (3) (2022): 487-99.

Wolters-Leermakers, N., Van Wingerden, E., Gerkema-Nijhof, R., & Van Balkom, H. (2022). Sensory Enhanced Interactive Storytelling-Technique (SEIS-T): supporting active communication through short, multimodal narratives. (2022). Manuscript accepted for publication.

Wolters-Leermakers, N., Van den Bogaard, K.J.H.M., & Prins, M.A. (2022). Understanding quality of life in people with complex and multiple communicative disabilities: A narrative overview of the empirical research literature. Manuscript resubmitted for publication.

Bendixen, Tina, Kirsten Costain, Saskia Damen, Vuokko Einarsson, Joe Gibson, Torill Gullvik, Elena Hauge, Annika Maria Johannessen, Olai Johnsgård, en Odd Erik Madsen. ‘Revealing hidden potentials–Assessing cognition in individuals with congenital deafblindness’, 2020.

Archbold, S., Athalye, S., Mulla, I., Harrigan, S., Wolters-Leermakers, N., Isarin, J., & Knoors, H. (2015). Cochlear implantation in children with complex needs: the perceptions of professionals at cochlear implant centres. Cochlear implants international, 16(6), 303–311. doi.org/10.1179/1754762815Y.0000000012

Isarin, J., Van Zadelhoff, I., Wolters-Leermakers, N., Speksnijder-Bregman, M., Hannink, M., & Knoors, H. (2015). A world of difference. Parental perspectives on cochlear implantation in deaf children with additional disabilities.  Deafness & Education International, 17(4), 219-230. doi.org/10.1179/1557069X15Y.0000000007