Prospective Longitudinal Cohort Study Children with Vision Impairment

Various studies indicated that, as a group, children with vision impairments
(VI) exhibit delays and sometimes setbacks in their development. For example,
they may show delays in social communication, play, language and joint
attention. In addition, several researchers report that children with VI
regularly exhibit aspects of autism spectrum disorder. These disabilities can
make the participation of children more difficult. However, individual
variation and causal relations are largely unknown. Therefore, we propose a new
descriptive, longitudinal study: Prospective Longitudinal Cohort Study Children
with Vision Impairments (PloCC-VI). For this study the family of Participation
Related Constructs (fPRC) is used as a framework to guide the project. The
framework focuses on participation, which is influenced by and influences
preferences, sense of self, activity competence and environment of the child
with VI and its family. We will monitor the development regarding these
factors of babies and teenagers with VI in order to gain more insight into
their developmental course and important factors within it. fPRC provides the
opportunity to examine participation from a broad perspective. In PLoCC-VI we
are interested in the individual differences within our specific group.

Our aim is to provide the fPRC with empirical data. With studying questions
based on literature and practice, the project aims to provide professionals
with necessary knowledge to set up early counselling. Besides, the results of
the project can provide interventions with a good scientific basis that enables
individual alignment of the assistance.

In this study, we are interested in individual differences, in other words,
differences within a population. We did not choose for a comparative approach,
looking for group differences, as this approach, *tends to draw our attention
away from the variables on which we should be focusing* (Warren, 1994, p3). We
agree with Warren that the comparative approach will show that children with VI
will certainly differ from sighted children. But this does not bring the
understanding of their problems any further. Because the population is small
and heterogeneous and our interest is in individual differences, the project is
primarily descriptive and exploratory in nature, As much as possible we will
make use of triangulation, both quantitative (questionnaires, test instruments)
and qualitative (observations) measurements will be used. For this purpose,
participants are divided in an extensive cohort and an intensive cohort,
inspired by the Bielefeld Longitudinal Study (Brambring, 2007). The baby
extensive cohort will be visited every six months at home during 2,5 years,
using quantitative measurements. Measurements will take place each half year,
this results in six waves in total. Participants of the intensive baby cohort
will be visited monthly during the possible setback period (14 - 31 months),
using both quantitative and qualitative measurements (12 to 18 waves in total).
Beyond this setback period, measurements take place each half year (three or
four waves in total). For the whole data collection of the intensive cohort,
the total number of waves varies from 16 waves to 21 waves, depending on the
participant*s age at onset of the study. Participants of the intensive cohort
undergo the same quantitative measurements as the extensive cohort. Both
intensive and extensive teenager cohort are visited each half year, resulting
in 5 waves (period of 2 years). Participants of the intensive cohort undergo
the same measurements as the extensive cohort, in addition video recordings
will be used in the intensive teenager cohort.

The chance of physical or mental damage is estimated to be very low. We do not
use materials with a social taboo topic. In addition, participants will not be
exposed to unpleasant stimuli, such as electric shocks, unpleasant odors or
stress-inducing instructions. From the care institutions (Royal
Visio/Bartiméus) we know that siblings of visually impaired children can
experience strain. They are burdened as little as possible for the research by
not giving explicit questionnaires to them. The measurements take place in a
familiar environment for the children.

The chance of incidents is estimated to be very low. To reduce the chance of
fatigue, video recordings are used instead of 'live' observations, in order to
reduce the duration of the home visit.

The research is group-based because we specifically want to investigate the
development of children with vision impairments in order to be able to help
children within the same condition even better in the future. Carrying out the
research with sighted adults would not be able to achieve the same results in
any way.