Research Directorate

Demographic Census Committee Coordinating Entity

Report on the Cognitive Test and Field Test

Individuals with Disabilities

Brazil

April2006

Introduction

This report is about the Cognitive Test and Field Test conducted in Brazil to test the questions on the topic of Individuals with Disabilities. The report includes an executive summary, a discussion of the methodology employed, the operational aspects and the analysis of the results obtained.

Demographic Census Committee

Table of Contents

  1. Executive summary

Introduction

Methodology

Interviewers

Respondents

Questionnaires

Translation

Data quality

Findings

2.Methodology and Operational Aspects

Fieldwork

Team

Training

Sample

3.Analysis

Structure and general aspects of the questionnaires

Question by question

Analysis comparing each basic question with a corresponding additional questions

Informant bias

Falsenegatives

Analysis of open questions

1.Executive Summary

Introduction

The Cognitive Test on Individuals with Disabilities in Brazil was fielded in April 2006 in the southeast, northeast and southern regions in which specific areas were selected in the municipalities of Rio de Janeiro (Rio de Janeiro), Olinda

(Pernambuco)and Curitiba(Paraná).

The Team of the Demographic Census Committee was involved in the conceptual design and questionnaire design, drafting of the instructions manual and other training materials, the analysis plan, and the selection of sectors.

The Team of the Demographic Census Committee administered the training for the technicians of the aforementioned State Units who were assigned as survey interviewers. In addition, it conducted observations and supervision of the data collection of the Cognitive Test on Individuals with Disabilities in the selected areas.

Methodology

a.Interviewers

Interviewers were selected among IBGE professionals, both permanent and contract employees, taking into account their previous experience with censuses and/or other household surveys. With the exception of an interviewer with just one year of experience in household surveys, all had over 10 years of experience in either household surveys or the census. None of the interviewers were students, but 30% have higher education, 47% middle level (over 10 years of education) and 23% basic education level. Of the total of 15 interviewers, 9 are females -- one in her 20sand the rest between the ages of 45 and 55. Among the men, one is in his 20s and the others between 45 and 54 years old. All interviewers speak Portuguese.

b.Respondents

A total of 406 people were interviewed. Among them, 227 indicated they have at least one of the difficulties being investigated. Since all the people with at least one of the difficulties being investigated answered all the questions in the Self-report Questionnaire,a total of 641 cases of disabilities were recorded, that is, each person with a disability, on the average, gave a positive answer in more than two modules. The socio-demographic profile of the respondents can be seen below.

First, alist of addresses was prepared, of individuals with the disabilities researched in Census 2000; it was developed on the basis of data from the Census. Due to sample loss mainly associated with change of address of people with disabilities, it was necessary to complement the list. Thiswas done on the basis of information obtained from the field, through indications of previously selected informants and visits to institutions serving people with disabilities.

The quota sample was stratified by type of disability researched in Census 2000, trying to include both genders and the following age groups:0-14,15-64,65and over.

Respondents, by age group – Cognitive Test - Brazil2006

45

40

35

30

52

Men

Women

02

15

10

5

0

0-45-910-14 15-19 20-2425-2930-3435-3940-4445-4950-5455-5960+

Age groups

Source:IBGE, Demographic Census Committee. Cognitive Test and Field Test on Individuals with Disabilities. 2006

Totalnumber of respondents by gender and age groups, by years of education

Gender and age groups

Respondents

Years of Education

Never

Attended

School

TotalMissing

0to45 to 89to1112or more

Total4062849148837028

Age 0-141111028522010

Age 15-64243151271546724

65and over501925924

Unknown2200000

Source:IBGE, Demographic Census Committee. Cognitive Test and Field Test on Individuals with Disabilities. 2006

Totalnumber of respondents, by gender and age group, by activity condition in the reference week and by earnings from all jobs.

Gender and age groups

Respondents

WorkEarnings from jobs(R$)

TotalMissing

PaidWork

Working,

Not for pay

Not

Working Total Missing

Does

Not have

300.00 And under

300.00 and =<

1500.00

>1500.00and =<

3000.00

3000.00

Total4065710162424062915406253

Age 0-1411130008111110920000

Age 15-64243249761162431373385753

65 and over5014045504302500

Unknown220002200000

Source:IBGE, Demographic Census Committee. Cognitive Test and Field Test on Individuals with Disabilities. 2006

c.Questionnaires

Four questions were added that had been used in the 2000 Demographic Census. Also, a thematic module was augmented: Body Structures and Functions, since this topic was requested by the National Coordinating Body for the Integration of Individuals with Disabilities – CORDE. In addition the response categories of some probes and functional questions were modified,howeverthe basic questions and their response categories were preserved.

d.Translation

All interviews were conducted in Portuguese. A translation of the questionnaire was carried out by technicians involved in the project, taking into consideration the cultural characteristics of the country, so that some terms were not translated literally.

The questionnaire was tested among IBGE staff, with relatives and friends of the technical staff involved in the project. There were no problems related to the translation, so it was not necessary to make modifications to the questionnaire due to translation difficulties.

e.Data Quality

Because of the length of the questionnaire, respondents’ cooperation declined in the questions of the final modules. Therefore, there is some concern that these data are not of the same quality as those related to the questions in the initial sections of the questionnaire.

Interviewers reported problems related to the sample list: addresses not found and potential informants that moved away; excessive questionnaire length, and problems related to interview administration training such as the fact that reading all questions exactly as worded made the interviews tiresome.

Generally speaking, few inconsistencies were identified. There was only partial non-response, with no loss of information in the core questions. In some cases the respondent did not wish to continue with the interview, in others it was not possible to complete the interview because the respondent was not available during the field period.

f.Results

The six core questions recommended in the Washington Group protocol for the cognitive test: 1) Do you have difficulty seeing, even with glasses or contact lenses?; 2) Do you have difficulty hearing, even with a hearing aid?; 3) Do you have difficulty remembering something or concentrating?; 4) Do you have difficulty walking or climbing steps?; 5) Do you have difficulty caring for yourself, such as dressing or bathing?; 6) Because o a physical, visual, auditory, mental or emotional condition, do you have any difficulty communicating, for example understanding others or being understood by others?

In addition to those questions, an additional module of questions was added to research aspects related to body structure and functions, in which the basic question was: Do you have any of the following physical impairments: (record only the first response), the body functions and structures with response options that include different types of paralysis or a missing limb or body part.

Considering the wording of the questions, in most cases the questions recommended by the Washington Group were easily understood. Frequently respondents gave their answer before hearing all the response categories, given the clarity and simplicity of the questions, which made them easy to understand by people with different levels of education. In many cases, it was necessary to wait for the respondent to finish answering, to then read the categories and ask him/her to choose that which best described his/her situation. However, some problems were observed regarding strictly following the objectives of the questions.

Generally speaking, the questions about vision and hearing did not present comprehension problems. These questions were well understood during the interviews. On the other hand, the questions did not make clear that the objective is to investigate the difficulties that imply impairment or limitation of activities and therefore all types of difficulties were captured. Thus, the question overestimates the population with difficulties as it includes persons who are suffering from temporary limitations.

The question about cognitive limitations did not present problems in terms of formulation; however it presented many problems regarding the goal of capturing serious limitations. It is a very inclusive question and for that reason it captured all types of difficulties related to memory and concentration. On the other hand, the question did not capture some cases of mental deficiencies such as Down’s syndrome, which were captured by the question used in the 2000 Demographic Census.

The question in the mobility module was also easily understood by respondents. Nevertheless, the question does not mention that the degree of difficulty needs to be evaluated without the use of equipment or assisting device. Therefore, individuals who normally use some type of aid to move around will remain in doubt as to whether or not to take such aid into consideration.

Generally speaking, the question about self-care was easily understood, although in some cases respondents found the example of bathing odd. Some people quickly answered that they have no difficulties to bathe and that no, they do not have difficulties caring for themselves, giving the impression that they wanted to show they had good hygiene habits. As in other questions, this one does not make it clear that the goal is to research permanent difficulties, and therefore it also included persons with temporary difficulties.

The question about communication did not present comprehension problems. Nevertheless it was hard to administer because of its length. As other questions, it does not make it clear that it is about communication difficulties that make it hard to carry out daily activities, and therefore it also captured all types of difficulties. Considering that it is administered together with the questions about vision, hearing and cognitive difficulties, this question duplicates the efforts to identify persons with difficulties, because it also included conditions previously investigated by the abovementioned questions.

2.Methodology and Operational Aspects

For the Cognitive Test and Fieldwork, 142 addresses were visited, in which 406 direct interviews were conducted in the period between April 10 and 20, 2006. Respondents had the following characteristics:

Gender and

Age groups

Persons interviewed according to their characteristics

Years of education

Never

TotalMissing

AttendedSchool

0 to 45 to 89or more

Total40628491488398

0 to 14111102852201

15to64 2431512715491

65and over50192596

Unknown220000

Men1821119664046

0to14564142990

15 to 6411275292744

65and over1400842

Women2241730824352

0 to 145561423111

15to6413187422747

65and over36191754

Unknown220000

Gender and age groups / Characteristics of persons interviewed
Employment Status / Work earnings (R$)
Total / Missing / Working for pay / Working – not for pay / Not work-ing / Total / Miss-ing / None / Under
300.00 / >=300.00
& up to 1500.00 / >1500.00 & up to 3000.00 / Over 3000.00

Total4065710162424062915406253

0 to 1411130008111110920000

15 to 64243249761162431373385753

65and over5014045504302500

Unknown220002200000

Men182255231021821222173542

0 to 1456160040565420000

15 to 64112950350112570173242

65and over1402012141100300

Women224324931402241693232711

0 to 1455140041555500000

15 to 641311547366131803212511

65and over3612033363202200

Unknown220002200000

Fieldwork

Given that this work is quite different from the other surveys done by IBGE, there was a need for interviewers to get used to the structure of the cognitive test, as well as familiarizing themselves with the questions,. In the first few days it was necessary to hold meetings to remember the goal of the study, the reasons why it is necessary to ask similar questions, the importance of having more than one questionnaire about the same person (Proxy and Self) and mainly the importance of this work for the next Census. To a certain extent, the interviewers are used to quantitative research and this cognitive test does not seem to them to be very practical. Because the interviews are lengthy, there is the feeling of lack of progress in the work, which caused them some distress.

Once the adaptation phase was over, the work was conducted as planned and, understanding the goals of the cognitive test, the interviewers were able to do their work independently.

There were two supervisors/observers per Unit of the Federation. Each of them accompanied different interviewers so that each interviewer was observed at some point during the field period.

On the first day of fieldwork it was observed that the mean interview time with each respondent was about 40 minutes. Therefore, in a household of four people and only one person with a disability, the total interview time would be over three hours.

The interview length was due to the following factors: first, the fact that according to the instructions, in each residential address selected, an Informant Questionnaire needed to be pre-filled with the information about each household resident and the Self Questionnaire with the information provided by the person with disability his/herself; but also due to the size of the questionnaire that, in eight modules, includes more than 100 questions. Moreover, the topic requires certain sensibility and disposition to listen to the respondents. In some cases the respondent wanted to think before responding, in other s/he wanted to tell his/ her family history and talk about the motives that led to the person’s impairment. In other situations, they wanted to speak about their experiences living with the disability. There were also cases in which the respondent did not want to complete the interview because s/he got tired and bored with so many questions. Two interviews were not completed because the respondent did not want to continue providing information, asking the interviewer to return the following day.

The time taken was too long for the interviews to be completed on the same day, which made it necessary in several cases to return to an address. Once this was determined, and the estimated time for data collection, the decision was made to conduct the complete interview, in the Informant Questionnaire, only with some of the household residents including one person with a disability, and to pre-fill some characteristics such as gender, age, and others for all residents.

Reading all the questions with their corresponding response categories exactly as worded made the interviews tiresome, both for the interviewer and for the respondent. The requirement that the questionnaire be read to the respondent made the interview seem like a mechanical act, preventing good interaction between interviewer and respondent. Even in cases in which the respondent attempted to chat about the topic, rather than simply responding to the questions, the requirement to read the questions made it difficult to create an environment where both, interviewer and respondent, could feel more relaxed, with the cordiality required of an interview.

The requirement to read the questions in sequence (see, for example, in questions 4.08 through 4.14, 5.11 through 5.15, among others) which were initially identically worded, with the exception of the question ending (type of difficulty about which the question is asking), took too long and bored the respondents. In some cases it was noted that he interviewer asked only the first question in the sequence, asking in the remaining items just the ending of the question, as for instance in: “Do you have difficulty remembering names of persons or places?”… “and remembering appointments?” … “and taking medications?” … Although it greatly facilitated the interview, the adoption of this procedure was an individual decision, since the general instruction given was that all questions had to be read.

In a majority of the cases, the respondents were patient and helped with the interviews. Only in two cases the respondents refused to continue the interview. One of them was too tired and, after almost 3 hours of interview requested that the interviewer return another day. Another one said he did not wish to answer questions any longer becausethey were personal and repetitive. Many respondents mentioned that the interview is very long and the questions are repetitive and boring. In some of the cases observed, the interviewer abbreviated the interview, asking general questions instead of reading the questions exactly as worded, when they perceived that they were taking too much of the respondent’s time and that s/he was getting impatient.

The questionnaire is toolong to be administered to one single person. Perhaps it would be more productive to only apply one or two modules to each person with a disability. This might be a strategy to spare the respondent and gain in interview quality. We observed, for instance, a person with a physical disability who had to answer the whole questionnaire before getting to the module that best captures his disability, got tired and abbreviated his answers regarding Body Structures and Functions.

The interview conducted with the person with disability him/herself seems to have worked well for most questions, although we observed two cases in which a person with mental impairment denied having such impairment. In both cases, the impairment was apparent and was confirmed by an informant.

Equipment

To conduct the cognitive and field test three work teams were organized, one for each unit of the federation. In Rio de Janeirio and in Olinda, each team was composed of two expertsbased in the Research Directorate and four interviewers based in the local agencies. In Curitiba the team was integrated by two expertsbased in the Research Directorate and seven interviewers based in the local agencies.