Effects of a bioresponse system for caregivers of adults with visual and severe or profound intellectual disabilities

Individuals with profound intellectual and multiple disabilities (PIMD) (of
whom 70% also has a visual impairment (Van Splunder, 2003)) experience high
levels of stress on a daily basis. Poppes, van der Putten & Vlaskamp (2010)
found in their study that 45% of the individuals with PIMD show aggressive and
destructive behavior and that this behavior occurs on a weekly or daily basis.
This challenging behavior in combination with high levels of stress hinders the
development and self-management of individuals with PIMD.

Caregivers in residential institutes are often not sufficiently responsive to
the client's signals, due to the difficulty of understanding the non-verbal
behavior of individuals with PIMD (Maes, 2011). Special training programs are
developed for caregivers to learn to understand subtle behavioral signals
within the context and to react sensitive and responsive to these signals
(among others Janssen et al., 2003, Damen et al., 2011). These programs are
intensive and expansive, and can only be taught to selected caregivers. Next to
the high costs, the turnover in staff in group homes are large, two to three
new caregivers for each client per year (Buntinx, 2003), which causes a loss of
the newly gained expertise.

Emotional arousal causes changes in biological signals. Through monitoring
these biological signals, using a bioresponse system, enables caregivers to
'read' and understand the signals of individuals with visual and severe or
profound intellectual disabilities. A bioresponse system is a low-cost aid
product to share knowledge with regards to the client's subtle stress signals
among colleagues. The empathy for the client can be increased with a shorter
and thus a less expensive training program.

The objective of the study is to test the effectiveness of the bioresponse
system. To verify this objective, a few research questions have to be answered.
The first research question concerns the ability of the bioresponse system to
monitor the emotional arousal and to clearly communicate this arousal to
caregivers. Other research questions will test the influence of the system on
the caregiver's sensitivity and responsiveness and the influence of the system
in combination with heightened sensitivity of the caregiver, on the client's
challenging behavior. The expected decrease in challenging behavior leads to a
new research question: to verify the system's influence on the quantity of
caregiver-client interactions. The last research question concerns the
user-friendliness of the system.

This study involves a randomized multiple baseline study design. During the
study, 21 video recordings will be made for each client: 7 video recordings
during the baseline phase, 7 during the intervention phase and 7 during the
follow-up phase. Weekly two or three recordings will be made by a research
assistant. The duration of each video recording will be in total 35 minutes: 10
minute of play; 10 minute of daily care; and 15 minute of semi-structured
caregiver-client interaction based on the *The Three Boxes Procedure* (NICHD,
2003). The length of the baseline phase will be randomized. The follow-up phase
will start three weeks after finishing the intervention. After the study, the
baseline videos, the intervention videos and the follow-up videos will be
scored according to the NICHD-scales, ESCS, ABCL & Pianta scales by independent
observers blind to phase.

The caregivers will be presented with the bioresponse system, an user manual
and an instruction video on how to use the system. The bioresponse system
exists of a small bracelet which measures skin temperature, a sensor sock that
measures skin conductance, a small band for the ankle and an app on a tablet
PC. The intervention requires the caregivers to use the bioresponse system two
times a day for 90 minutes over a period of 12 weeks.

Caregivers are requested to enter their observations of their client*s behavior
on the tablet PC. In the Netherlands, every client with a visual and severe or
profound intellectual disability has his own behavior signaling observation
lists, in Dutch it is called: *signaleringsplan*. These observation lists show
an individualized description of the behavior of the client indicating emotion
from *relaxed* to *very high levels of stress*. Color coded buttons, that
correspond to the colors used in the signaling observation lists, are displayed
on the tablet PC. The caregivers will be asked to score (on the tablet PC)
their interpretation of the bioresponse signal and the behavior of the client.

During the video recordings the clients will interact with their caregiver,
following a semi-structured approach. They will wear a small bracelet, a sensor
sock (a normal sock with two small and soft fabric electrodes) and a small
elastic band with a clip for the sensor around the ankle. Several straps hold
the sock and ankle band in their position. These straps are fastened with
Velcro. It might occur that these straps are fastened too tight and are
pinching off. Caregivers are advanced on this risk and stimulated to check with
every use whether the straps are not fastened too tight.