Findings on four effective communication interventions for children and adults with congenital deafblindness
Persons (children and adults) with deafblindness express themselves and understand others without a formal language on the basis of other communicative acts that may consist of bodily movements, tactile cues, postures and natural gestures (Goode, 1994). The hearing and sighted caregivers find it difficult to participate in this world of proximity and touch.
As a consequence, this situation can lead easily to severe challenging behaviours in the persons with deafblindness, and in stagnation of their communication and language development. The most persons with congenital deafblindness get stuck in pre-symbolic communication and never learn to express their thoughts in a more abstract way outside the concrete here and now. Caregivers, families and clients themselves express a huge need for intervention programs to improve interaction, communication and language with persons who are deafblind.
Layered interpersonal communication
In his framework of “innate intersubjectivity” Trevarthen (2001) describes interpersonal communication as the ability to share meanings from a certain “ego-alter” awareness. From the awareness that own intentions can be exchanged with another person, and that “the other” is also somebody with own intentions and purposes, develops a young child very early in life the ability to share thoughts and feelings with the other.
The intersubjective development in relation to communication and language develops in three layers, which are complementary to each other. The first layer is characterised by harmonious interactions and affect attunement, the second layer by joint attention and meaning-making and the third layer by symbolic communication and perspective-taking (Trevarthen & Braten, 2007). Our research group focused the last five years on different aspects of interpersonal communication and developed successful four intervention programs for persons with deafblindness.
Communication-coaching like in top sports
Building on the Intervention program Contact (Janssen, 2003), we developed different intervention programs in which a communication specialist has a central role as a coach. The coach analyses a communicative situation. On the basis of this analysis the coach trains or coaches the caregivers just as in top sports. Caregivers watch a film-segment of their own behaviour in communication with a client and the coach gives comments: what can be done differently or better, which skills must be trained more, on which moment a new concept can be best introduced in what way, is the client in this second motivated enough for a new concept, etc. The caregivers are also coached “on the job” when they are working with a client. Furthermore, they learn skills to consider the life history of a client and to communicate as a team about this. In four different PhD-studies we saw that by coaching the caregivers, the children and adults with deafblindness made enormous progress.
Affective involvement and reducing negative emotions: Intervention 1
In this PhD-study is focused on the essential role of affective involvement (mutual sharing of emotions) during interaction and communication. Affective involvement is of crucial importance for well-being because it evokes positive emotions and reduces negative emotions. Fostering effective involvement based on the tactile modality can be challenging for caregivers. As an instrument the Intervention
Model for Affective Involvement was developed (Martens, 2014). Three intervention studies were performed, in which in total 9 participants with deafblindness and 34 caregivers were involved. This intervention program proved to be effective for: a) fostering affective involvement, fostering positive emotions and reducing negative emotions; b) fostering effective involvement on the first and second layer of interpersonal communication; c) for children and adults with congenital deafblindness across different caregivers, situations, settings and organisations.
Intersubjectivecommunication: Intervention 2
The central aim of this PhD-study was to evaluate the effectiveness of the intervention program on intersubjective development in three layers for the support of communication between persons with deafblindness and their caregivers (Damen, 2015). In two studies in total 6 participants with deafblindness and 25 of their caregivers were involved. All participants demonstrated significant improvements in the first and second layer and four of the six participants showed a significant improvement in the third layer. The most effects were seen during the communication phase in which caregivers were coached in their efforts to transfer and share meanings with the client. In a third study, the intervention was evaluated on the effects of 9 dyads (caregiver client couples). Positive outcomes were measured for all dyads on the first and second layer and in four of the nine dyads for the third layer. It was furthermore demonstrated that the level of intersubjective behaviour was significantly related to the level on which the caregiver demonstrated intersubjective behaviour. This study proved how valuable it is to support intersubjective communication.
Tactile communication: Intervention 3
The aim of this PhD-study was to foster the use of the tactile-bodily modality in caregivers of persons with deafblindness. Because caregivers of persons with deafblindness lack the natural skills in tactile communicating, interaction and communication is hampered. As an instrument, the Intervention Model for Tactile Communication was developed (Huiskens, submitted, 2015). Interventions based on this model are evaluated in three studies with 9 participants with deafblindness and 9 caregivers. The intervention proved to be very effective for the participants with deafblindness. They all improved the use of tactile initiatives and tactile gestures and signs. The effects on tactile initiatives and tactile gestures and signs increased in most cases, but unexpected outcomes were measured also. Suggestions for practice and further research were given.
Interaction and Bodily Emotional Traces: Intervention 4
This intervention study, as part of a PhD-project (Bloeming, submitted 2015), was focused on fostering harmonious interactions and the use and recognition of expressions based on Bodily Emotional Traces (BETs) (Daelman, 2003). Because for persons with deafblindness experiences and tactile impressions of daily activities are important it was assumed that support of caregivers on interactions and recognition of expressions should improve the quality of interaction. The intervention was evaluated with 5 adults with congenital deafblindness and an intellectual disability and 8 caregivers. During the intervention, all target behaviours increased: attention of client and caregiver, confirmation by the caregiver, affective involvement, number of expressions based on a BET by the participant, percentage of these expressions recognised by the caregiver. During follow-up, most target behaviours decreased but stayed above the baseline level.
Implications for further research and practice
The outcomes of these studies suggest that much can be done for the improvement of interaction and communication of people with congenital deafblindness by supporting their caregivers. Communication coaching proved to be effective in preventing challenging behaviours and negative emotions and proved to be effective to bring communication at more advanced layers of intersubjective communication. However more international research is needed on the third layer of intersubjective communication and language in this population. For daily practice communication-coaching on a more permanent basis proved to be a necessity
Prof Dr Marleen Janssen
University of Groningen, Special
Needs Education and Youth Care
Royal Dutch Kentalis
Tel: +31 50 36 36 575
h.j.m.janssen@rug.nl
