The development of the Dutch ICF Activity Inventory for children and adolescents with a visual impairment (D-AI KIDS)

In the Participation round 2007-2010 of ZonMw InZicht, the research project
*Development of the Dutch Activity Inventory to measure rehabilitation needs of
visually impaired elderly and rehabilitation outcome* was financed. This
resulted in the development of the Dutch Activity Inventory (D-AI) which allows
one to structurally identify rehabilitation needs, using the nine ICF domains
of the Participation and Activity scale. The D-AI also enables one to determine
the effects of rehabilitation interventions, both on goal-level (e.g. cooking)
and task-level (e.g. reading recipes, cutting vegetables). The D-AI is aimed at
adults aged eighteen years and older with a visual disability. In 2010 Royal
Dutch Visio and Bartiméus have implemented the D-AI as a new and structured
intake assessment instrument. Immediate advantages are increased transparency,
improvement of client-perspective when defining their area(s) of difficulty and
the possibility of measuring the effects of the rehabilitation process. Royal
Dutch Visio and Bartiméus have now commissioned the VU University Medical
Centre to increase the applicability of the D-AI to children and adolescents
aged <18 years.

Since Visio and Bartiméus have reported that the rehabilitation goals of young
adults (18-25 years) are not covered by the DAI for adults (the goals of the
young adults have a different emphasis), the develpment of a specific
questionnaire for young adults was requested. For the development of this
questionnaire the perspectives of young adults and professionals will be
central to the study. Evaluation of the rehabilitation goals will also be
possible with the D-AI YA.

Development and validation of the D-AI KIDS and the D-AI YA:
Currently there is no standardized instrument that measures visually impaired
children*s and young adults' participation based on the nine ICF-CY domains.
The primary objective of this study is to develop the D-AI KIDS and the D-AI
YA: assessment instruments - to be used during the intake procedure at MRCs -
for visually impaired children and young adults aged 0- 25 years old, which
measures activity and participation needs. It can also be used to evaluate the
rehabilitation process. The study can be divided into a qualitative and a
quantitative stage in order to develop and assess the instruments' psychometric
properties, respectively. Practical implementation of the D-AI KIDS and the
D-AI YA will lead to a more standardized way of diagnosing rehabilitation needs
(restrictions in participation). This is likely to result in more streamlined
referrals to available rehabilitation programs, and ultimately, to better
participation.

The study design is an observational cohort study, developing the D-AI KIDS and
the D-AI YA and assessing the psychometric properties. The study consists out
of a qualitative and a quantitative stage.
The qualitative stage consists out of a patient file study, a psychometric
review of available acticity and participation instruments and focus
groups/interviews and concept mapping workshops with the target population,
parents and professionals. Based on this a first draft of the D-AI KIDS and the
D-AI YA will be developed and pilot tested. The pilot study will result in a
second draft of the D-AI KIDS and the D-AI YA.
The quantitative stage consists out of a large field study with two points of
measurement; a baseline measurement and a measurement after six months.
Analysis and evaluation will lead to the third draft of the D-AI KIDS and the
D-AI YA which will be implemented by Royal Dutch Visio and Bartiméus.

This study can be characterized as a study without risk. At all times the
children will be carefully monitored, for example for signs of *objection*. As
the participants are minors who will not always be able to verbalise their
objection; the researchers and assessors will look closely for signs of
objection (or *verzet* in Dutch). What constitutes objection is different for
every child. Each child has its own unique pattern of behaviour. Behaviour can
be influenced by the mood of the child, the parent-child relationship, the
researcher-child relationship, the environment etc. Before assessment the
researcher and the parents will discuss how the child generally behaves.
Behavioural patterns that might indicate objection will be identified. During
the assessment the child will be closely monitored for any signs of discomfort,
or behaviour that falls outside normal parameters for the child. When this
occurs, it will be seen as a sign of objection from the child and participation
in the study will be terminated. During all phases of the research-process the
parents are allowed to retract their consent. As both researchers are
psychologists, it is believed that the children*s behaviour can be adequately
monitored and judged.
Participation is entirely voluntary and participants can withdraw from the
study at any given time without an explanation and without it having any
consequence for future treatment. Children aged 0 to 7 years old will only be
indirectly involved in the study through parent report. Children aged seven
years and over will experience minimal burden and negligible risk. The
assessments are non-invasive. The minimal burden lies in the time the child and
parents have to spend either during the focus groups/interviews or concept
mapping workshop, the pilot study or the field study. All participants will be
clearly informed about the expected duration of their input before consent.
The PhD candidate has a master*s degree in developmental psychology and some
experience working as a professional in the field. She therefore has good
knowledge of child development/behaviour and good child-interpersonal skills.
The child and parents benefit from participating in the study by obtaining an
extensive and complete overview of the child*s rehabilitation needs on the
basis of which a personalized rehabilitation plan can be designed. This plan
can then be reviewed to see whether the intended progress is made or whether
the plan needs to be modified. Current intake procedures are not standardized
and can therefore not be reviewed systematically.
Systematically reviewing participation scores will lead to a more effective
rehabilitation process and ultimately to better participartion.