1. The availability of environmental features needed by young people with cerebral palsy across Europe
Sandra Espín-Tello
Allan Colver

2. Overview Concepts SPARCLE
Analysis: Differences between SPARCLE 1 and SPARCLE 2
National contextual factors

3. Social model of disability
Individual Environment
Personality.
Impairments of
different severities.
Participation Quality of Life

4. International Classification of Functioning, Disability and Health WHO 2001
Body structure and function
Activity
Participation
Context
Environmental factors
Personal factors

5. Some areas of children’s participation
Responsibilities:
Money
Shopping
Helping others
Helping at home
Maintaining relationships:
Parents
Siblings
Friends
Teachers
Community life:
Clubs
Church
Charity work
Education:
Getting to school
Getting about school
Homework
Recreation:
Sport
Films

6. Environmental factors
Physical
Adaptations
Access
Toilets
Transport
Aids
Finances
Services
Social
Inclusiveness
Emotional support
Physical support
Communication
Time
Service co-ordination
Attitudinal
Positive attitudes
Encourage independence
Attitudes of Family Peers Teachers Therapists Strangers Services

7. Children with cerebral palsy Living in Europe
Study of
PARticipation of
Children with cerebral palsy
Living in
Europe
million euros European Union Grant QLG5-CT
Luebeck

8. Number of children in SPARCLE1 and SPARCLE 2
Centre
No. of children
SPARCLE 1
SPARCLE 2
North England, UK
116
109
West Sweden 83 68
Northern Ireland, UK
102 88
Southeast France 67 65
Southwest Ireland 98 77
East Denmark
115 86
Central Italy 85 42
Southwest France 58
Northwest Germany 75 74
Total
818
667

9. European Child Environment Questionnaire - ECEQ

10. Domains of environment questionnaire - ECEQ
Physical
Home
School
Community
Transport
Social
Attitudes
Family and friends
Teachers and therapists
Classmates

11. Example of a question
Does your child need a lift in his or her school?
No, not needed □
Yes needed □
If needed, is it present?
Mostly or usually yes □
Mostly or usually no □

12. Differences between SPARCLE 1 (aged 8-12) and SPARCLE 2 (aged 13-17)

13. 5 most needed features SPARCLE 1 SPARCLE 2
1. Specialised therapy services (95.4%)
2. Information about financial benefits (89%)
3. Physical help from family members living in home (86%)
4. Child allowed extra time at school (85%)
5. Special staff help child in school (83.5%)
1. Teachers have understanding of medical condition (86.9%)
2. Child allowed extra time at school (81.0%)
3. Information about financial benefits (80.4%)
4. Special staff help child in school (80.3%)
5. Physical help from family members living in home (78.3%)

14. Needed features
Features needed by fewer individuals in SPARCLE 2 than in SPARCLE 1
Features needed by more individuals in SPARCLE 2 than in SPARCLE 1 23 10
‘Need for relative to supervise child for some hours’ changed most, falling 71%-54%.

15. 5 most ‘needed and unavailable’ features
SPARCLE 1
SPARCLE 2
1. Modified kitchen at home (16.9%)
2. Parent support groups in area (33.9%)
3. Receive grants for holidays (35.9%)
4. Hoists at home (44.8%)
4. Information about financial benefits (44.8%)
1. Parent support groups in area (29.0%)
2. Receive grants for holidays (32.5%)
3. Modified kitchen at home (33.8%)
4. Adapted toilets in public places (47.6%)
5. Information about financial benefits (42.7%)

16. 5 most ‘needed and available’ features
SPARCLE 1
SPARCLE 2
1. Family members living in home have positive attitude towards child (99.2%)
2. Emotional support from family members living in home (99.0%)
3. Child encouraged to reach potential by family members living in home (98.0%)
4. Physical help from family members living in home (97.4%)
5. Teachers/therapists have positive attitude towards child (97.1%)
1. Emotional support from family members living in home (99.3%)
2. Family members living in home have positive attitude towards child (98.6%)
3. Physical help from family members living in home (98.0%)
AND Child encouraged to reach potential by family members living in home (98.0%)
4. Teachers/therapists have positive attitude towards child (97.4%)
5. Adapted toilets at school (96.1%)

17. Needed and available features
Needed features with higher availability in SPARCLE 2 than in SPARCLE 1
Needed features with lower availability in SPARCLE 2 than in SPARCLE 1
Needed feature with similar availability in SPARCLE 2 to SPARCLE 1 25 24 10

18. Needed and available features by region
SPARCLE 1
SPARCLE 2
Region with best percentages
North England
Region with worst percentages
Southeast France
Region with best percentages
Northern Ireland
Region with worst percentages
Southeast France

19. Needed and available physical features by region
SPARCLE 1
SPARCLE 2
Region with best percentages
North England
Region with worst percentages
Southwest France
Region with best percentages
West Sweden
Region with worst percentages
Central Italy

20. Needed and available social support features by region
SPARCLE 1
SPARCLE 2
Region with best percentages
East Denmark
Region with worst percentages
Central Italy
Region with best percentages
Southwest Ireland
Region with worst percentages
Central Italy

21. Needed and available attitudinal features by region
SPARCLE 1
SPARCLE 2
Region with best percentages
Northern Ireland
Region with worst percentages
Southeast France
Region with best percentages
Northern Ireland
Region with worst percentages
Southeast France

22. National contextual factors
Attitudes
Equality, anti-discrimination, advocacy and information
Education law and policy
Social security law and regulations
Support and care services
Health services and assistive technology
Physical environment
Transport
Leisure
Others

23. Some illustrative differences at national policy level
Denmark
Public after school clubs
State transport to after school clubs as well as to school
One parent can look after their disabled child – with salary they would have received in their job
Sweden
Central national resource for providing information
Italy
Very low financial assistance to families
France
Almost all children with cerebral palsy in special schools

24. Conclusions
No overall worsening or improvement in availability of environmental features between 8-12 and years
So countries do adjust for the older age, strength, independence and varied activities of adolescents with cerebral palsy
However, many needed environmental features are unavailable
Countries rank in the same order for availability of needed features at 8-12 and years
Suggests there are structural differences between countries, probably due to national factors such as policy, statutes and legislation

25. SPARCLE 2 Partners and Associates
Centre
Partner
Research Associates
Newcastle
Allan Colver
Kathryn Parkinson Heather Dickinson
Caroline Joyce
Goteborg
Malin Nystrand
Louisa Henriksen
Belfast
Jackie Parkes
Nichola McCullough
Grenoble
Jérôme Fauconnier
Audrey Guyard
Cork
Alan Lyons
Laura O’Connell
Copenhagen
Susan Michelsen
Karin Lindh
Viterbo/Rome
Marco Marcelli
Alberto Furlan
Toulouse
Catherine Arnaud
Mariane Sentenac
Virginie Ehlinger
Lübeck
Marion Rapp
Heidi Kiecksee
Nora Eismann

26. THANK YOU