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Presentation to the 9th ForumVision national conferenceUniversity of Gothenburg, September 2014

ERNST D. THOUTENHOOFD

FD universitetslektor

The VAP-scales and cerebral visual impairment

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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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—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

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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

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VAP theme ‘independence’ (self-judgment)

1 2 3 4 5 6 7 8 9 10.000

2.000

4.000

6.000

8.000

10.000

OVICVI

Competences

Sum

scor

es

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VAP theme ‘independence’ (parental judgment)

1 2 3 4 5 6 7 8 9 10.000

2.000

4.000

6.000

8.000

10.000

OVICVI

Competences

Sum

scor

es

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VAP theme ‘visual competence’ (self-judgment)

1 2 3 4 5 6 7 8 9 10.000

2.000

4.000

6.000

8.000

10.000

OVICVI

Competences

Sum

scor

es

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VAP theme ‘visual competence’ (parental judgment)

1 2 3 4 5 6 7 8 9 10.000

2.000

4.000

6.000

8.000

10.000

OVICVI

Competences

Sum

scor

es

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VAP theme ‘participation’ (self-judgment)

1 2 3 4 5 6 7 8 9 10.000

2.000

4.000

6.000

8.000

10.000

OVICVI

Competences

Sum

scor

es

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VAP theme participation (parental judgment)

1 2 3 4 5 6 7 8 9 10.000

2.000

4.000

6.000

8.000

10.000

OVICVI

Competences

Sum

scor

es

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VAP theme ‘visual foci in child-rearing’ (parents)

1 2 3 4 5 6 7 8 9 10.000

2.000

4.000

6.000

8.000

10.000

OVICVI

Competences

Sum

scor

es

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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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(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.

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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.