UNICEF/WG Module on Child Functioning

Development of the module Purpose To to identify the sub-population of children and youth (aged 2-17 years) with functional difficulties. These difficulties may place children at risk of experiencing limited participation in a non-accommodating environment Aim To provide cross-nationally comparable data To be used as part of national population surveys or in addition to specific surveys (e.g., health, education, etc.)

Development of module WG Workgroup on Child Functioning and Disability was established fall 2009 under the leadership of ISTAT (Italy) UNICEF joined the Workgroup in early 2011 November 2011; 11th WG meeting in Bermuda - presentation of the literature review and first draft of questions June 2012: Technical Consultation on the Measurement of Child Disability meeting hosted by UNICEF with disability/child development experts & survey experts October 2012: 12th WG meeting - presentation of the revised module in preparation for field work September 2012-2016: validation process through cognitive and field testing Points taken from: WG Samoa PP

Construction of module Used the ICF biopsychosocial model Avoided a medical approach Used, when appropriate, questions already tested and adopted by the WG Included the reference “Compared with children of the same age…” Considered age specificity (2-4, 5-17) Response options reflected disability continuum Points taken from: WG Samoa PP

Selected domains Seeing Hearing Mobility Self-care Communication Learning Emotions Behaviour Attention Coping with change Relationships Playing

Development of the module Questions ask about difficulties the child may have in doing certain activities Unless noted otherwise, all response categories are: No difficulty Some difficulty A lot of difficulty Cannot do at all Questions on vision/hearing and mobility include questions on the use of glasses/hearing aids/ assistance with walking

Cognitive Testing Cognitive testing (2012-2016) September 2012, India January 2013, Belize April 2013, Oman July 2013, Montenegro 2012/2013/2014/2015/2016 (including testing on teens), USA March 2016, India April 2016, Jamaica Points taken from: WG Samoa PP

Field Testing Field testing (2013-2016) Independent field testing on earlier version of the module or subset of questions completed in Haiti (Brown University, 2013), Cameroon & India (London School of Hygiene and Tropical Hygiene, 2013), and Italy (NSO, 2013) Field testing of complete version of the module in Samoa (NSO, 2014) and El Salvador (NSO, 2015) with technical assistance from UNICEF/WG Module also used in surveys in Zambia (National Disability Survey, NSO, 2014) and Mexico (MICS, 2016) Dedicated methodological work in Serbia (NSO, 2016) Points taken from: WG Samoa PP

India: field test with medical follow-up 227 parent interviews between November 2012-February 2013 2 stage process: Stage 1: Administration of Child Functioning module to a sample of parents of children from 2-17 years old Stage 2: Clinical assessment (medical, vision, hearing, speech, motor, and psychological) of all children identified as having functional difficulties in stage 1. Sensitivity = 100% of children who were identified as having “a lot of difficulty or cannot do at all” in stage 1 were found to have an impairment in stage 2 Specificity = 99% of children who were identified as NOT having difficulty were found to be non-disabled children in stage 2 Overall, this indicates that the module is correctly identifying children with disabilities, and is accurately differentiating between those with disabilities and those without.

Field test in Serbia 2,915 parent interviews in February 2016 in one Serbian province - Vojvodina Primary goal of the field test was to assess the performance of the Child Functioning module in the field Secondary goal was to compare: the 2-4 year old questionnaire of the Child Functioning module with the 2-4 year old questionnaire of the Ten Questions (TQ) module the 5-17 year old questionnaire of the Child Functioning module with the 5-17 year old questionnaire of the Washington Group short set of questions. The TQ module and the Washington Group short set were combined to form a control group questionnaire (CG questionnaire)

Field test in Serbia Two-stage stratified cluster sampling approach: Random sample of enumeration areas from 2011 population census data, with probability proportional to size 3,852 households selected, 3,396 located, 2,905 interviewed with the response rate of 86% 2,937 children aged 2-17 were identified. Questionnaires were filled out for 2,915 children, with the response rate of 99% Six teams Each team consisted of four interviewers, one controller and one supervisor The field work : 19 January 2016 - 8 February 2016 Training: 5 days in January 2016

Feedback from interviewers Questions to be filled out by interviewers at the time of the survey, right after the corresponding questions were asked whether the interviewer had to repeat the question whether the respondent asked for clarifications of words or concepts whether the respondent had difficulties with response categories For children 2 to 4 CF10= difficulty walking CF13= difficulty being understood by you CF14= difficulty learning things CF15= difficulty playing For children 5 to 17 CF35= Anxiety CF36 = Depression CF38 = Difficulty concentrating on an activity CF39 = Difficulty accepting change

Feedback from interviewers Note from the field: at the end of each day about what they observed in administering the questionnaires 10 questions to be filled out by interviewers at the end of the field work Focus group discussions with interviewers and controllers (two full days, 4 group for interviewers - each group with 6 interviewers + 3 groups for controllers each group with 3 participants each).

Feedback from interviewers CF10= difficulty walking CF13= difficulty being understood by you CF14= difficulty learning things CF15= difficulty playing CF35= Anxiety CF36 = Depression CF38 = Difficulty concentrating on an activity CF39 = Difficulty accepting change

Feedback from interviewers CF10= difficulty walking CF13= difficulty being understood by you CF14= difficulty learning things CF15= difficulty playing CF35= Anxiety CF36 = Depression CF38 = Difficulty concentrating on an activity CF39 = Difficulty accepting change

Feedback from interviewers CF10= difficulty walking CF13= difficulty being understood by you CF14= difficulty learning things CF15= difficulty playing CF35= Anxiety CF36 = Depression CF38 = Difficulty concentrating on an activity CF39 = Difficulty accepting change

Feedback from interviewers “The findings of the qualitative survey show that the CQ questionnaire has generally been administered without any major problems; the interviewers generally managed the questionnaire well and the reactions of the respondents were mostly neutral to positive” Repetitive to read out loud response categories : no need to repeat for each questions as respondents get to know them

Modification post-field work Inclusion of the word “very” for the questions on anxiety and depression Instruction for interviewers to stop repeating response categories after first three questions unless needed Modifications tested in India and Jamaica

Data analysis Data analysis to determine cut-offs – similar results in levels obtained in Serbia and Samoa Module able to capture moderate to severe forms of difficulties, not mild (some difficulty leads to false positive) Inclusion of “a lot of difficulties or cannot do at all” is the recommended cut-off for international comparison, expect for emotions (5-17) and controlling behavious (for 2-4) for which only most severe forms are included – more variations on what is considered ‘normal” for children

Results from the UNICEF/WG module Table CFD.1: Child functioning Percentage of children age 2-17 years with functional difficulties, Serbia, 2016 Children age 2-4 years Children age 5-17 years Children age 2-17 years Percentage of children years with functional difficulties Number of children Percentage of children with functional difficulties Total 1.1 219 4.4 1250 3.9 1468 Sex Male .5 111 623 3.8 734 Female 1.7 107 627 4.0 Area Urban .8 127 748 3.5 875 Rural 1.5 92 5.0 501 593 Region Vojvodina Mother's education None 16.7 6 17.6 52 17.5 58 Primary 2.5 33 6.3 241 5.8 274 Secondary .6 96 3.1 719 2.8 814 Higher .0 84 3.4 238 322 Ethnicity of household head Serbian .9 149 856 3.0 1005 Hungarian 35 152 3.6 186 Bosnian 2 3 Roma 10.7 9 13.1 91 12.8 101 Other 15 4.9 116 4.3 131 Desn't want to declare 38 Missing/DK 4 . Wealth Poorest 60% 1.9 129 5.2 758 4.7 887 Richest 40% 90 491 2.6 582

Results from the TQ (children 2 to 4) Percentage of children age 2-4 years who screen positive for indicated domains Percentage of children aged 2-4 years with at least one reported disability Difficulty seeing, either in the daytime or at night Appears to have difficulty hearing No understanding of instructions Difficulty in walking, moving arms, weakness or stiffness Not learning to do things like other children his/her age No speaking / cannot be understood in words Cannot name at least one object (2 years old) .6 .0 2.1 .8 9.1 4.4 10.2 16.0

Results from the WG short set (children 5 to 17) No difficulties Some difficulties A lot of difficulties Cannot see at all Missing Moderate to severe Child have difficulty seeing even when wearing glasses 96.5% 3.2% .2% .1% .0% 0.3% Child have difficulty hearing even when using a hearing aid 99.2% .6% 0.2% Child have difficulty walking or climbing steps 98.8% .9% Child have difficulty remembering or concentrating 95.7% 3.8% .3% Child have difficulty with self-care 98.3% 1.5% Child have difficulty communicating 97.1% 2.4% .4% 0.5% 1.3

Translation of the module Professional translation of the Child Functioning module into six languages Spanish French Arabic Russian Vietnamese Chinese Portuguese Translation methodology: Forward/backward translation by separate translators Internal focus group comprising of different translators to discuss and review translations Focus group discussions with UNICEF and the Washington Group to discuss and review translations Review of translated questionnaires by UNICEF staff (disability focal points) who are native speakers of each language Feedback to translators with any required changes

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