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Research TTSA: summary

Title: Using mobile technology to support relationship development, well-being and social participation of adults with a visual and intellectual disability. Summary of research proposal Technology supporting Therapy for Separation Anxiety (TTSA). Author: Dr. P.S. Sterkenburg, Bartiméus Department of Psychotherapy, VU University Amsterdam.

Being separated from a loving and caring person may be very frightening. Experiencing such separation anxiety is a normal reaction for persons with a developmental age between 0 and 48 months. However, persons who have not learnt that people do exist although they are not physically present may become very anxious. These persons have not yet developed an internal representation of the carer, person permanence, corresponding to that person’s continuity in time and space. For persons with a visual and intellectual disability keeping contact with the comforting caregiver is difficult and due to the impairments they may have difficulty to overcome the separation anxiety and to develop autonomy.

Prevalence studies indicate that separation anxiety among children with ID is four times higher than among the non-ID peers. The absence of mental representations, person permanence, may be the cause of fear and separation anxiety and a precursor of challenging behaviour and psychopathology. However, challenging behaviour is often not associated by caregivers to underlying feelings of fear and anxiety and therefore anxiety disorders among persons with ID may be underreported and under-diagnosed. For persons with a visual disability and ID the prevalence of anxiety seems to be even higher: in 30% of the cases anxiety and fear were reasons to apply for treatment at the Psychotherapy department of Bartiméus.

Hardly any research has been done on the treatment of separation anxiety among persons with a visual disability and ID. Failing to treat separation anxiety may place a burden on the caregiving system because it may maintain or increase challenging behaviour. Research among children and adolescents for example indicated that anxiety disorders do not spontaneously disappear and can cause comorbid disorders such as depression and behaviour problems. In the care for persons with ID, caregivers over time may feel increasingly incompetent and stressed. For the client with ID continuing separation anxiety can be demoralizing and can cause depression and isolation. Consequently this may lessen their possibilities of integration in community and decreases independent citizenship. 
Using modern technology may give new ways of treating separation anxiety and isolation. However, research on the use of modern ICT-devices in the intervention of separation anxiety of persons with a visual disability and ID is lacking. 

The key objectives of the study are: 

  •  Assess the effect of the implementation of ICT-aids and the response of the caregiver at reunion. What is the effect of the use of modern technology on the quality of life: on reducing separation distress; on reducing signs of loneliness; on reducing challenging behaviour; increasing indicators of well-being; on increasing recognition and differentiation of the caregiver who is the receiver of messages sent by the client using a mobile device. 
  •  Assess if modern technology augments the quality of client-caregiver interaction and whether the modern technology results in more differentiation among different caregivers to whom they are or are not connected with the mobile device. 
  •  Assess the social validity of ITC-aids. Can a mobile device (SHAKEM) be used while providing care to another client? Does the modern technology for the client lead to less, not more signals of distress? 

This multiple single case analysis study involves six persons, with a visual and a moderate to mild intellectual disability, being at least 18 years of age and living in a grouphome, becoming distressed when the caregiver leaves the room, and having the physical capacity to use the touch-screen of the mobile device (the specially developed SHAKEM iPhone Touch). A series of single case studies with a multi-phase design ABCBC with a three-week post-intervention check will be used.

A: Baseline – mobile device with inactive reply function 
B: Mobile device with active reply function, which provides automated responses to messages of clients. 
C. Mobile device with an active reply function, which is operated by the caregivers; the caregivers will be instructed to follow-up on the message when they return to the client. 

By using this design the added value of the caregivers intervention to the use of the mobile device with and without computerised responses will be examined. 


Paula Sterkenburg, PhD