2. Impact Assessment Seminar, 2-6 December Phnom Penh
Case study
Title: Measuring the quality of life of children
suffering from cerebral palsy
Country: Sub-Saharan Africa
Specific theme: Measuring impact
By: Cécile Rolland, Technical Adviser – Occupational Therapy, CBR
Impact Assessment Seminar, 2-6 December Phnom Penh

3. Impact Assessment Seminar, 2-6 December Phnom Penh
Project description
A kit for measuring the quality of life of children suffering from Cerebral Palsy (CP), designed to be used in programmes to support children suffering from CP in their living arrangement
Measuring tool = objective and subjective indicators + repeatable over time
Designed to be used in support programmes = functional rehabilitation, and CBR
of children suffering from CP = children + CP
In their living arrangement = contextualised + adapted to our intervention areas
Impact Assessment Seminar, 2-6 December Phnom Penh

4. Impact Assessment Seminar, 2-6 December Phnom Penh
Study description
Research stages:
Desk study (2012) : welfare vs satisfying basic needs ?
Field study (2013) : contextualisation
Features:
A means of measuring
Contextualised
Aimed at children
Children suffering from CP
What has been implemented?
2012: desk study
literature review + use of Disab’kid/Delphi
Conclusions: Welfare vs satisfying basic needs
2013: field study – DR Congo
Adapting the concept: 5-18-year-old children and proxies
Measuring kit (questionnaires, training, adaptation and user guides)
English and French versions
Conclusions
Confirmation of previous conclusion
Have/have not + perception
Contextualisation
How was this implemented ?
Desk study: student on M2 pathway in community health. Physiotherapy. Experience in paediatrics in France and Kenya. Study based in France.
Field study: medical anthropologist. Experience in sub-tropical Africa. Study based in the DR Congo, 4 months (HI programme).
How does this help to measure the effects or impact of the project?
Helps to measure a child’s perception of his living conditions at the beginning (during) and end of the project (sometimes after several years).
Includes contextual and/or objective indicators (economic level; level of child’s development) allowing us to differentiate (partially, to date) between the impact of the environment and the impact of the project.
Brief description of the methodology used
Literature review: identifying the various ways of defining quality of life + tools for children suffering from CP
Attempt at a theoretical adaptation of an existing tool – Disab’kid
Delphi Method to develop both tools
In the field: comparison of developed tool and contextual reality (focus groups/interviews)
Adapting the concept
Test 1+ finalisation + test 2
Development of training tools + adaptation of tool + user guide
Recommendations
Impact Assessment Seminar, 2-6 December Phnom Penh

5. Fig. 1: The four levels in the life of a child in Sub-Saharan Africa
Description of tool?
Society
Community
Household
Individual
Conceptual framework
Fig. 1: The four levels in the life of a child in Sub-Saharan Africa
A contextualised framework
Development of the framework:
- interviews, home visits, panel of experts (Delphi)
The conceptual framework emphasises the point that the life of a child in Sub-Saharan Africa is based around four different levels: individual, household, community and society.  
- individual
the person of the child, independent of his environment
3 areas explored: physical, psychological, and social well-being
- household = the family unit or primary social group which shares day-to-day activities.
social and economic aspects
- community = a group of people who live in the same locality (the area where the daily routine takes place)
the place where the child’s life habits and cultural habits are formed
- society = beyond the community; places that are not visited on a regular basis, but which nonetheless structure or organise life
social participation and link to services
Impact Assessment Seminar, 2-6 December Phnom Penh

6. Description of the tool?
Equipment and procedures
A subjective and objective data set
A discussion
Subjective and objective data
Objective measurement of the motor, cognitive, and sensory functions of children/adolescents (GMFCS etc)
Identity issues
Evaluating the child’s functional level (7E)
Evaluating the family’s economic level (12Q)
Subjective measurement of the child’s satisfaction level
The core of the questionnaire/conceptual framework (47Q)
Interview
Questionnaire – depending on the child’s capacity to reply (select from a scale)
Discussion which leads on to the replies
Time = 1 hour
Impact Assessment Seminar, 2-6 December Phnom Penh

7. Description of the tool?
Pre/Post survey
Preparations for implementation
Contextualised equipment
Training
Interpreting the replies
Preparations for implementation
1 guide with recommendations for adapting the questionnaires
1 training kit + 1 guide to using the questionnaires
Interpreting the replies
A database: cross-referenced results
- by field
- by child
- child’s economic level and level of functional capacity
Impact Assessment Seminar, 2-6 December Phnom Penh

8. Impact Assessment Seminar, 2-6 December Phnom Penh
Summary points:
A contextualised/adaptable tool for the countries where we work
A tool constructed for and with children (+5 years old) and adolescents suffering from CP
A tool to be tested
A tool for change
Impact Assessment Seminar, 2-6 December Phnom Penh

10. Impact Assessment Seminar, 2-6 December Phnom Penh
Implementation
Activity
Tools
Who
Time span
Definition of a contextualised conceptual framework
Handbook of recommendations
Team with technical support (senior level)
3 -6 weeks
Adapting the tools
Handbook of recommendations (definitions, indicators/questions, training and user guide, changing database structure)
Team with senior-level support and a technical coordinator
Questionnaire trial /
Team
Appointment/training of researchers and supervisors
Handbook of recommendations
Training tools
Project manager with technical support
2-4 weeks
Survey
User guide, scale guide
Researchers and supervisors, reporting to the team
Dependent on the number of children and organisation
CONDITIONS , PILOT COUNTRY (end of planning period)
First project in a cycle
Profile experienced technical adviser
Collaboration with Head Office to monitor stages/validation
Commitment to update tools
Compiling database
Use Excel to compile the data
Team
1-2 children/hour
Impact Assessment Seminar, 2-6 December Phnom Penh

11. Key points: success factors
A contextualised tool
An identified target
A piloted tool
Selected, trained and supervised researchers
A contextual analysis for each new series of surveys
Take your time
A contextualised and piloted tool
Use of a panel of experts; use of local knowledge
Time
A tool adapted to suit its target
Defining age
Selected and trained researchers
do not hesitate to select more researchers than required, and then make a second selection
well-qualified researchers: + sensitiveness to children and disability awareness
experienced researchers where possible
A contextual analysis for each wave of surveys
Does not apply to children under 5 years of age
Suitability for certain situations? (refugee camps)
Impact Assessment Seminar, 2-6 December Phnom Penh

12. Key points: constraints
Selection of researchers
No contextual analysis chart
Does not currently apply to children under 5 years of age
Limit: suitability for certain situations? (refugee camps)
Not available in Spanish
Selection of researchers
No contextual analysis chart
Limit: does not apply to children under 5 years of age
Limit: suitability for certain situations? (refugee camps)
Not available in Spanish
Impact Assessment Seminar, 2-6 December Phnom Penh

13. The next steps: discussion
At Head Office
Developing the tool to cover 0-5 year olds
Translation into Spanish
In the field
Researching pilot projects (2 years)
testing the tool in French
developing an appropriate reference tool for Asian and Spanish-speaking contexts
Impact Assessment Seminar, 2-6 December Phnom Penh