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

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

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

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

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

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

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

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

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

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

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