Presentation to the 9th ForumVision annual national conference, University of Gothenburg, September 2014.

1. The VAP-scales and cerebral visual impairment
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Presentation to the 9th ForumVision national conference
University of Gothenburg, September 2014
ERNST D. THOUTENHOOFD
FD universitetslektor

2. Research on the social functioning and (educational) participation of adolescents
with cerebral visual impairment at the University of Groningen, 2011-2014
Dr. Paul Looijestijn, University lecturer and child psychologist employed by Royal Dutch Visio, developed the “Visual
Activities and Participation” (VAP) scales that enable Dutch diagnosticians to make detailed assessments of
functional impairment, limitations on engaging in practical activities, and constraints on social participation as
experienced by youngsters with CVI and their parents themselves. The VAP scales are based on the WHO’s
International Classification of Functioning, Disability and Health (ICF). The VAP provides a solid basis for identifying
support need, using an evidence-based profile that prioritises regular activities and normal participation, including
also school activities and educational participation.
In three subsequent Master research projects we aimed to identify the VAP scales’ ability to distinguish pupils
with ocular visual impairment (OVI) from pupils with cerebral visual impairment (CVI), while focusing on how CVI is
experienced in daily life.
The first study was an exploratory case-study based on in-depth interviews with a mother and her thirteen year-old
daughter with CVI, Rosa. Rosa performed normally on ocular impairment tests, but revealed considerable
problems brain-processing visual input. Her VAP scores suggest she experiences considerable difficulties with
commonplace activities and most aspects of social participation reported in the VAP. The case-study suggested that
the VAP scales are sensitive to functional characteristics of living with CVI, but not (as a methodological constraint of
the case-study) how sensitive.
The second study therefore extended the research to twelve cases of CVI and twenty-two cases of OVI matched
for age range. Findings suggest that adolescents with CVI in particular judge their self-sufficiency and participation
considerably lower than do adolescents with OVI. The parental judgment on their child’s social performance also
differs more from the child’s self-assessment when their child has CVI, and parents of adolescents with CVI report
upbringing being heavier than parents of adolescents with OVI. Here too the VAP scales are sensitive to the
differences being reported, with lower scores for CVI adolescents on both activities and participation.
The third study was a thorough review of the literature in view of our findings, and led to a revised definition of
CVI as ‘a visual impairment that leads to dysfunctions in daily life due to limitations in the lower and higher visual
functions irrespective of demonstrable damage to or dysfunction of one or more brain regions.’
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3. www.ips.gu.se/english
—How is CVI experienced in daily life?
Groningen University research team
Dr. Paul Looijestijn, project leader
Dr. Ernst Thoutenhoofd, project consultant
Ybelina van der Meulen, Master dissertation student
Elsje Kamminga, Master dissertation student
Lorynn Teela, Master dissertation student

4. www.ips.gu.se/english
Research design
Three separate studies
• Case study of ‘Rosa’ (aged 13) and her mother
• Group study of 12 CVI and 22 OVI youngsters—aged 12-20, group
av.15:6—and their parents
• A review of the literature taking account of our findings, aimed at a (re-
)definition of CVI in terms of functioning and social participation.
Instruments:
• Interviews and VAP-scales (case study)
• Patient file analysis and VAP-scales (group study)
• Standard test administrations were used to control for personal
development and intelligence and collect information on behaviour and
psychosocial characteristics (YSR, CBCL, TRF, NOSI-K)

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The Visual Activities and Participation
(VAP) scales [1]
The 10 life domains and situations of the VAP-scales are fully mapped
onto the ICF, covering:
1 psychosocial competences
2 communication
3 mobility
4 personal care
5 house duties
6 maintenance and repairs
7 school, training and work
8 recreation
9 finances
10 social interaction

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Case study results
• Rosa has considerable problems in processing visual information
• Rosa experiences serious problems across various life-domains
(VAP-scales)
• Rosa internalises her problems (test scores within clinical range)
• Rosa’s mother experiences high levels of upbringing related stress
(NOSI-K standard measure)

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Quotes
• Rosa
‘I may run into someone I only met the day before in town without
recognising that person. I may seem arrogant, but I just cannot
remember people I meet…’
• Rosa’s mother
‘In my head I can readily imagine a school where Rosa might go to.
That isn’t hard. But the education system makes it impossible. It is
frustrating that with no right school Rosa’s handicap is so much
greater.’
At the time of the study Rosa attends a private school.

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group study VAP-scale results

9. www.ips.gu.se/english
VAP theme ‘independence’ (self-judgment)
10.000
8.000
6.000
4.000
2.000
.000
1 2 3 4 5 6 7 8 9 10
Sum scores
Competences
OVI
CVI

10. VAP theme ‘independence’ (parental judgment)
www.ips.gu.se/english
10.000
8.000
6.000
4.000
2.000
.000
1 2 3 4 5 6 7 8 9 10
Sum scores
Competences
OVI
CVI

11. VAP theme ‘visual competence’ (self-judgment)
www.ips.gu.se/english
10.000
8.000
6.000
4.000
2.000
.000
1 2 3 4 5 6 7 8 9 10
Sum scores
Competences
OVI
CVI

12. VAP theme ‘visual competence’ (parental judgment)
www.ips.gu.se/english
10.000
8.000
6.000
4.000
2.000
.000
1 2 3 4 5 6 7 8 9 10
Sum scores
Competences
OVI
CVI

13. www.ips.gu.se/english
VAP theme ‘participation’ (self-judgment)
10.000
8.000
6.000
4.000
2.000
.000
1 2 3 4 5 6 7 8 9 10
Sum scores
Competences
OVI
CVI

14. www.ips.gu.se/english
VAP theme participation (parental judgment)
10.000
8.000
6.000
4.000
2.000
.000
1 2 3 4 5 6 7 8 9 10
Sum scores
Competences
OVI
CVI

15. VAP theme ‘visual foci in child-rearing’ (parents)
www.ips.gu.se/english
10.000
8.000
6.000
4.000
2.000
.000
1 2 3 4 5 6 7 8 9 10
Sum scores
Competences
OVI
CVI

16. Conclusions over the two empirical studies [2]
• More significant participation issues are experienced by CVIs in
various domains, including mobility, recreational activities and
psychosocial activities
• Issues reported as more serious by CVI parents address mainly the
domains of social interaction and communication.
• Self-judgments and parent judgments point to greater effects on social
functioning and participation among CVIs.
• CVI parent judgments point to higher levels of parental concern.
• There is a greater difference across all VAP domains between CVI
self- and parent judgments than between OVI self- and parent
judgments.
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17. www.ips.gu.se/english
(Re-)defining cerebral visual impairment [3]
A critical review of the literature, taking account of our findings, has led
to the following suggested (re-)definition of CVI as:
a visual impairment that leads to dysfunctions in daily life due to
limitations in the lower and higher visual functions irrespective of
demonstrable damage to or dysfunction of one or more brain regions.

18. www.ips.gu.se/english
References
[1] Looijestijn, P.L. (2004). Het Visueel Profiel. Een onderzoek naar visuele perceptie, visuele
activiteiten, participatie, probleemgedrag en opvoedingskenmerken bij kinderen en jongeren
met oculaire slechtziendheid. Groningen: Stichting Kinderstudies.
——(2007). Visuele Activiteiten en Participatie. Handboek VAP-schalen (deel 1). Huizen:
Koninklijke Visio.
——(2008). De ICF toegepast in de revalidatie van mensen met visuele beperkingen: het Visueel
Profiel. Haren: Koninklijke Visio.
[2] Kamminga, E. (2012) Impact: Activiteiten- en participatiebeleving van normaal begaafde
kinderen en jongeren met cerebrale slechtziendheid (CVI). Master dissertation, University of
Groningen.
van der Meulen, Y. (2011) Cerebral visual impairment—over een jongere met CVI: ‘Ik sla de
beelden die ik zie niet op’. Master dissertation, University of Groningen.
Nb: At the explicit agreement of all involved in this study it is withheld from public sharing.
[3] Teela, L. (2013) Cerebral visual impairment: Towards a directive. Master dissertation,
University of Groningen.