1、,Challenges in identifying and measuring disability among children Howard Meltzer Department of Health Sciences, University of Leicester, United Kingdom,2,What is the purpose of collecting disability data on children?,Health monitoring of the total population Service provision and resource allocatio
2、n Unmet need Services for children less well-developed than for adults 16-17 year olds least well served Equalisation of opportunity Schooling Employment,3,Extra significance of collecting disability data on children?,Health advantages Early intervention Economic advantages Getting children to schoo
3、l and work Improve social cohesion Removing negative attitudes primarily social exclusion and discrimination Quality of life improvements Children know problems are recognised,4,UN Convention on the rights of people with disabilities (2008),Article 7: Children with Disabilities Parties shall take al
4、l necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.Article 31 - Statistics and data collection Parties undertake to collect appropriate information, including statistical and research data
5、, to enable them to formulate and implement policies to give effect to the present Convention.,5,Difficulties in estimating the number of disabled children in the world,UN General Assembly Special Session on Children (2001) highlighted the difficulty in gathering accurate data on the incidence of di
6、sability among children and referred to the fact that countries have used different definitions of both impairment and disability; the quality of statistical data varies widely; too little research has been done on the lives of disabled children.,6,The European Action Plan on disability (2006/7),Def
7、initions and criteria for disability vary according to policy objectives, legislation and administrative standards. Population surveys provide subjective data, affected by differing cultural perceptions in individual Member States. Data focus on the working age population, and exclude children and p
8、eople living in institutions. (Commission of the European Communities; 2005).,7,Can disabled children be counted? UK review (Read, 2007),Prevalence rates vary from 5%-18% depending on definition or measure. Different sub-classifications limit comparisons between surveys. No survey designed to cover
9、the whole population of disabled children. Data sources limited by age, geography, size of subgroups and place of residence. Very few data sources collect data on social and demographic circumstances. Few take account of how age and development of children may shape functioning and ability,8,Challen
10、ges in collecting disability statistics on children,Geopolitical and administrative issues Conceptual issues What does disability mean for a child? Operational issues How does one operationalise the concept? Logistical issues How does one obtain data about children? Ethical issues,9,Who is responsib
11、le for national policies on disabled children?,Government ministries which have responsibility for disability tend to be primarily concerned with employment, pensions, or social affairs. Their main focus is on equalisation of opportunity in the labour market, having a comprehensive and coherent syst
12、em of disability benefits or promoting equitable access to heath, social, educational and vocational services. Child disability statistics do not fit easily within one government ministry and cut across health, education, social affairs.,10,Defining disability for children,Applicability Questions ad
13、dressed to adults are inappropriate or different in kind for children (e.g. falling over, reaching and stretching, behavioural problems). Questions addressed to children are sometimes inappropriate for adults (e.g. crawling, running, communicating). Variations by culture. When should developmental d
14、elay be regarded as disability.,11,Developmental delay,What is “normal” for a childs age or sex? Children are by their very nature in the process of development. Different activities are regarded as the norm for particular age groups. When should children be expected to walk or to read or to communi
15、cate complex ideas? Should any delay from the norm be regarded as a disability? General delay versus specific delay. Variations by culture when children are expected to wash, dress, feed or toilet themselves. Do parents know what these norms are; delays may reflect poor parenting skills?,12,Defining
16、 disability for children,Measuring capacity and/or performance In some activity domains, seeing and hearing, walking or climbing, parental responses should be valid and reliable. However, questions relating to the childs behaviour (particularly for older children) may be less reliable. Parents may n
17、ot know about their childrens activities and behaviour at school. With or without disability equipment or assistance. Does one look at what child can do, does do, wants to do or is allowed to do?,13,Defining disability for children,Influence of the family What the child can do, is allowed to do or a
18、ctually does is dependent on the childs family, particularly for their emotional and psychological development. Attitudes of parents towards diet, exercise, learning and life-style behaviours are all relevant. Functioning of the child can not be seen in isolation but in the context of the family sys
19、tem. The consequence of this interaction and inter-dependence is that a survey about disabled children requires as much if not more information about the family structure, behaviour and attitudes.,14,Defining disability for children,Influence of the educational environment Schools as well as familie
20、s have a role in the social participation and the social integration of children. The school has a big influence on the childs development. Does information need to be collected from teachers? If so, which teacher?,15,Defining disability for children,Influence of the health, social and welfare envir
21、onment Apart from family and school, the need for, provision, and use of health, social and welfare services are key who can help the child, in what capacity and at what time? One can argue that disability can be measured by contact with services. Dangerous because: misses out unmet need, may reflec
22、t of severity and availability of local services.,What life situations should be covered? (McConachie et al., 2006),Participation essential for survival Eating, sleeping, basic hygiene, sleeping Participation in relation to child development Social interaction, play and exploration, mobility Discret
23、ionary participation What child wants to do given available resources Educational participation,17,ICF for Children and Youth (ICF-CY),Takes account of all the influences. Clinical utility of the ICF-CY has been tested. Participants with access to clinical populations are completing questionnaires f
24、or children in four age groups:0-2; 3-6; 7-12; 13-18 These can be used as a framework for developing instruments for epidemiological research.,18,How are children dealt with in censuses and surveys?,Censuses which include all children (from birth) which include children from a certain age. Surveys w
25、hich ask questions about all household members including children which ask questions about all household members including children from a certain age. Separate surveys of children Choice of procedure depends on policy priorities, statistical infrastructure; resources available.,Main methodological
26、 issues in surveys of child disability,Sample design and sampling procedures Research design: one or two phase studies Interviewing procedures Questionnaire design Analytical strategies,20,Sampling children for national surveys,Sampling school records Screening the population (enumeration or by mail
27、) Using centralised records - health or benefits Piggy-backing on other surveys,Survey design: to screen or not to screen,Advantages of one phase designs Distribution of dimensional measures Facilitates risk and protective factor analysis Facilitates future longitudinal studies Increases response ra
28、te Reduces respondent burden Less biased and greater precision of statistics Disadvantages of one phase design Cost,Single versus multiple respondents,Advantages of multiple respondents Different information from different sources Better predictor of disability Enhances specificity of prevalence est
29、imates Combining data from multiple respondents Three sources (parent, child, teacher) Qualitative and quantitative data,23,Ethical issues in surveying children,Participation of children capability confidentiality privacy Severely disabled children appropriateness of questions distress to parents Ch
30、ild abuse Suicidal thoughts,CASP: Child and Adolscent Survey of Participation (Bedell, 2004),Paying attention, concentrating Remembering people, places Problem solving or judgement Learning new things Controlling behaviour or mood Motivation (lacking interest) Depression or anxiety,Speech Vision Hea
31、ring Movement (balance and coordination) Strength or activity level Reacting to sensation or stimulus Physical symptoms (headaches, dizziness, pain),CASP: Child and Adolscent Survey of Participation (Bedell, 2004),Assessment of Activity and Participation Using books and computers Doing family chores
32、 Moving around the neighbourhood Doing self care activities Household chores (washing dishes) Social, play or leisure activity with friends Educational activities in the classroom Structured community events,CASP: Child and Adolscent Survey of Participation (Bedell, 2004),Age expected: your child pa
33、rticipates in the activities the same as or more than other children his or her age (With or without assistive devices or equipment) Somewhat limited: your child participates in the activities somewhat less than other children his or her age (May also need occasional supervision or assistance) Very
34、limited: your child participates in the activities much less than other children his or her age (May also need a lot of supervision or assistance) Unable: your child does not participate in the activities, although other children his or her age do Not applicable: other children your childs age would
35、 not be expected to participate in the activities.,LIFE-H: Assessment of Life Habits (Fourgeyrollas et al., 1998),Area,Nutrition Fitness Personal care Communication Housing Mobility Responsibilities Interpersonal relations Community life Education Work Recreation,Example,Setting the table Physical a
36、ctivities Using the toilet elsewhere Writing, telephone, computer Making the bed, light cleaning Riding a bicycle Managing pocket money Maintaining social ties Scouts, religious groups Taking part in school activities Babysitting, paper delivery Sports events,LIFE-H: Assessment of Life Habits (Fourg
37、eyrollas et al., 1998),Level of accomplishment,No difficultyWith difficultyAccomplished by a proxyNot accomplishedNot applicable,Description,No discomfort or effort (even if adaptation, assistive device or human assistance required) With discomfort or effort (even if adaptation, assistive device or
38、human assistance required) Essential activities (washing, dressing, moving around accomplished by other person Non-essential activity (going to cinema) can not be done by some one else Never done and no need to do,The Activities Scale for Kids (Young et al., 2000),I put toothpaste on my toothbrush a
39、nd brushed my teeth. I fastened my clothes by myself. I had a snack myself. I did my handwriting by myself. I walked in crowded areas. I carried a drink or food to the table without spilling it. I stood still for ten minutes without resting (in a queue at bus stop or shop. I got through heavy doors
40、by myself.,The Activities Scale for Kids (Young et al., 2000),I played team sports with others in my class I did climbing activities (trees, rocks, over a fence) I played some sports by myself or with a few friends (kicking a ball around). I played sport with local competitive club (football, hockey
41、, netball, basketball). I keep my balance while playing rough games. I did activities I usually enjoy for a long time without getting tired out (swimming, jogging, tennis). I worked carefully with my hands (lego, models, sewing).,The Activities Scale for Kids (Young et al., 2000),All of the timeMost
42、 of the timeSometimesOnce in a whileNone of the time,I did it every time I needed to.I did it almost all of the time I needed to, once a while I didnt do it. I did it about half of the time I needed to, about half of the time I didnt do it.I did it once last week when I needed to but most of the tim
43、e I didnt do it.I did not need to do it at all when I needed to.,Conclusion,National surveys on child disability can be carried out successfully. All the problems are recognised; the solutions are known but widespread. Need a synthesis of all the work done so far to arrive at a feasible strategy. The ICF-CY is the overarching topology to bring it all together in a meaningful way.,
