Collecting disability data in challenging environment

May 7 11, 2012 Washington, D.C.

Jean-Francois Trani Brown School Washington University in St. Louis jtrani@wustl.edu

Outline
Getting started Objectives Definition Screening for disability Building Tools Training Sample frame Challenges Prevalence: How many?

Darfur survey on children vulnerability

1. Getting started: Are certain facts clearly in mind?

Who is the study being carried out for, who has commissioned it? Who is funding it? Which organisations (corporate, charity, Government) will be able to use the results of the study? Aim and objectives? Do you need a survey, or would another type of study be more appropriate? What time frame, budget, human resources? What are the socio-cultural specificities of the country and how will these influence a survey on disability?
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2. Objectives (i): Why a survey?

A survey is necessary when a given finite population, or a subpopulation, i.e. the disabled people of Afghanistan, Darfur, Sierra Leone etc., has to be studied. The survey provides information about this population. This information is gathered through variables, which give the population characteristics or parameters. A sample, which is a subset of elements of the population, is selected and studied.
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2. Objectives (ii): Main objective

To collect relevant information on disability and on the living conditions of disabled people which will be useful to guide the design of appropriate public policies.

Disabled Mujahidin, Kabul

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2. Objectives (iii): Specific objectives

Estimate prevalence by type of disability Provide insights on needs & opportunities of PwDs Understand difficulties, social barriers, prejudice Ex. Darfur: which children are excluded from school
and why? Nepal: are women with disabilities benefiting from womens SHG.

Define strategic guidelines to overcome difficulties and stigmatization

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3. Definition (i)
No international agreement on definition Definition influences prevalence
Ex.: In Afghanistan: 3 (UNDP/NRVA) - 8% (NGO survey Kabul); Sierra Leone: 2.4% (census) to 23% (UNICEF/SL Stats)

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3. Definition (ii): What is relevant in a given context ?

Adapted to specific objectives of a task (i.e. define policies) Linked to a specific context (prevalence may vary with time, situation) In my work: Focus is on difficulties in everyday life

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3. Definition (iii)
Screening questions based on body functions and structures component of the ICF and on the Capability Approach (A. Sen) Improvement of health services + better social awareness Inclusion of less severe difficulties in functioning Higher prevalence
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3. Definition (iv)
Strict but comprehensive definition of disability inspired by the ICF and the CA: Interaction between an individual impairment in functioning and the community and social resources, beliefs and practices that enable or prevent a person from participating in all spheres of social life and taking decisions that are relevant to his/her own future
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4. Screening for disability (i): How to identify persons with disability?

Use of a screening tool elaborated by experts, DPOs, etc. in Afghanistan Initially 27 screening questions to detect disabled person based on functionings, activities, environment extended to 35 Tested for cultural validity in Afghanistan, India, Malawi, Nepal, Sierra Leone using mixed methods Internal consistency and reliability tests :
Ex. Cronbach alpha 0.85 Afghanistan; 0.93 Darfur; 0.93 Nepal. Kappa Interrater reliability: 0.5 (0.8 for 22 questions). Test-retest:0.4. Same in india. In Afghanistan, construct validity was also tested on the sample ex post using confirmatory unrotated principal factors analysis.
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4. Screening tool (i): mobility-physical

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4. Screening tool (ii): mobilityphysical/sensory

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4. Screening tool (iii): mood-affect

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4. Screening tool (Dari)

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5. Building tools (i)

While developing the tools that will be used for the survey, it is essential to ask what information each and every question is going to provide. This can be done by first defining the fields of interest for the survey, then determining what type of information will be required from each field:
Technical file Drawing up the questionnaire
Information Fields Identifying the resources Access to these resources
Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s): Slide 16

Barriers to these resources

Identifying ways to overcome barriers

Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s):

Health Education Employment and income Livelihoods Social participation Awareness

Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s):

Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s): Indicator(s): Question(s):

5. Tools
5 other modules in Afghan study (4 in Darfur study): Household characteristics (15 Q.: demographic and socioeconomic background of members; 32Q in Darfur study) Health situation (25 Q./3Q access to health, quality of services, expenditure..) Education situation (14 Q./66Q: access to education, barriers, quality education) Employment situation (35 Q./19Q.: activities, unemployment) Income (18 Q./5Q.: earnings, donations, loans) Livelihoods (35 Q./10Q.: water and sanitation, lighting, cooking, dwelling, assets, land) Self perception, social status and social inclusion (57 Q./23Q.: self perception, rights, violence, care) Final questions (6Q.: food intake, love, disability cause) Questionnaires designed to collect this information: One for adult (>15) one for child (<15) in Afghanistan, only for children in Darfur Different modules for men and women for social status and inclusion in Afghanistan

6. Training: Main issues

Attitudes: fighting stereotypes and prejudices Concepts: disability definition, types of impairments, disability models Sampling methods Security on the field Methods of survey: handling the cluster checklist, marking the household, handling the different forms Interview techniques Question by question
Herat hospital physiotherapy for disabled children (cerebral palsy mainly) Slide 18

7. Sample frame Afghanistan

Sampling universe: All provinces of Afghanistan 34 provinces, 397 districts, 31 covered by the 2004 census: -Population of 20.691 million in 31 provinces covered by the census -Population of 756400 in Helmand, 357300 in Paktika and 249100 in Zabul not covered by the census Sampling stage 1: Random sample of primary sample unit -121 districts randomly selected using probability proportional to size method among 397 districts of Afghanistan

Sampling stage 2: Random sample of clusters 31 provinces covered by the census: 164 clusters randomly selected using probability proportional to size method. 3 remaining provinces: 6 clusters in Helmand, 3 in Paktika and 2 in Zabul At least 1 village/town block randomly selected from each district

Sampling stage 3: Random sample of households -In each cluster 30 households randomly selected (5130 households and 38320 individuals recorded): -All disabled respondents selected and interviewed (958) -1 non-disabled respondent selected in the same household matching the disabled respondent in age and gender (958) -1 non disabled respondent randomly selected in every 5th non disabled household (780)

7. Sample frame Sierra Leone

6.440.053 persons in Sierra Leone In 4 regions, 13 districts
4.186.492 persons not living in surveyed districts

2.253.081 persons in 5 districts selected (= sampling sites) West: - Western Area Urban (Freetown): 1,173,022 (3) - Western Area Rural: 174,249 (2) North: - Koinadugu district: 265,765 (2) South: - Bo district: 515,945 (4)

2.250.891 persons not included Reasons for exclusion: - not living in surveyed sampling site - household did not want to participate (1 household)

2190 individuals in households surveyed

931 children not eligible for interview

1259 eligible participants for interviews

833 not selected for the interview. 1 refusal to be interviewed

425 interviewed (33.8%)

189 men in sample that were not included for the maternal health care analysis.

235 women (76.5%)

135 women without a disability no disability

100 women with a disability

We Proceded as follows

Village of Wala

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Find the center of the village

Village of Wala

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Pick a direction with a random method

Village of Wala

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30 Village of Wala

25

15

10

1 5

20

Follow this through The village numbering the houses until The end of the village Or till you reach 30 HHs

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Randomly pick a house to start 10 1 5

30 Village of Wala

25

15

20

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30 X X X

From this house Proceed to the House with the Nearest front door 1 5

30 Village of Wala

25

15

10

20 Continue this until you have reached 30 HHs

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If we reached the end of the village before we get 30 HHs

25

X X X

30 Village of Wala

25

15

10

1 5

20

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If we reached the end of the village before we get 30 HHs

25

X X X

30 Village of Wala

25

15

10

1 5

Spin the pointer to find the new Direction

20

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If we reached the end of the village before we get 30 HHs

25

X X

X X

30

X X X

30 Village of Wala

25

15

10

1 5

Continue to the next Closest HH until All 30 HHs have been done

20

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If the village had less than 30 HHs total..

Survey all HHs x x x x x x x

Village of Wala

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If the village had less than 30 HHs total..

x x x

x x x x x

Continue to the Next nearest Village and nearest Door to get all 30 HHs

Village of Wala

x x 30
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8. Methodological challenges (i)

Complexity of sample design Nomads (Kuchis) included if temporarily settled in a selected village in Afghanistan but included in Darfur Security issues : achieve a cluster in a day (compose teams accordingly) Transportation problems (absence of roads, private use)

8. Methodological challenges (ii)

Identifying clusters Finding respondents !

Involving our donors

8. Methodological challenges (ii)

Theres too much to say on the field organization Lets have a look at prevalence!

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9. How Many ?: Prevalence (i)

Prevalence of severe disability based on the Screening Tool in Afghanistan

2.7 % 0.2 % (CI) 675,000 people (based on an estimated 25 M. Afghans) Lower than expected but in line with previous estimates
1999 2003 UNDP/UNOPS MICS 3% 2.5 % 3% 2% 1% (1-4 years old) (7-17 years old) (physical disability) (mental disability)

2003

NRVA

On average 1 household out of 5 has 1 PwD High level of mental distress (2.1%) Slide 35

9. Prevalence (ii)
Looking at the continuum: where do we place the threshold?
Prevalence threshold with regards to the Screening questionnaire: 27 questions in Afghanistan.

2.7%

4.6%

Threshold 1 At least 1 YES to section A, and/or At least 2 YES in anyone of sections B-E
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Threshold 2 At least 1 YES to section A, and/or At least 1 YES in anyone of sections B-E

Looking at the continuum: where do we place the threshold?

Prevalence thresholds with regards to abilities in everyday functioning based on 9 dimensions. Considering the Health questionnaire: 46 questions.

9. Prevalence (iii)

2.2%

10.8%

36.7%

58.9%

Threshold 1

Threshold 2 Very Severe/ Severe Difficulties on at least 1 dimension

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Threshold 3 Very Severe/ Severe/ Moderate Difficulties on at least 1 dimension

Threshold 4 Very Severe/ Severe/ Moderate/ Mild Difficulties on at least 1 dimension

Very Severe Difficulties on at least 1 dimension

Typology for Severe Disability (based on the 2.7% rate)

9.40% 36.50% Mental disability Neurological (epilepsy, seizures) Associated disability (More than 1 type) Physical disability Sensory disability 18.80%

9.70% 25.50%

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9. Geographic Distribution
Proportion of Households with PwD by Major Areas

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9. Geographic Distribution
Proportion of PwDs by Major Areas

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Sex ratio for Severe Disability (AF)

Overall population
N = 38,320

People with Severe Disability

N = 1,039

Female 48.9 %

Female 41.0 %

Male 51.1 %

Male 59.0 %

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Perceived cause of disability (by gender)

30 Female Male

Higher proportion of females

25

20

percentage

Higher proportion of males

15

10

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Age breakdown (AF)

20.0% ND PwD 18.0%

Half the population < 16 Low proportion of PwDs between 0-4 Highest proportion of PwDs between 5-14 Over-representation of PwDs after 40

16.0%

14.0%

12.0%

10.0%

8.0%

6.0%

4.0%

2.0%

0.0% 0-4 5-9

Slide50-54 43 55-59 60-64 65-69 70-74 75-79 80-84 85-89 90-94 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49

95+

Prevalence in urban/peri-urban Sierra Leonean adults by severity

2.1 2.4 5.3 7.4 None Mild disability Moderate disability Severe disability 82.9 Very Severe disability

Prevalence in urban/peri-urban Sierra Leonean adults by type

2.48 2.16 5.2 2.94 0.97 3.5 None Physical Sensory Learning Behavioral/Social/Mood affect 82.75 Neurological (Epilepsy) Associate

Prevalence in Nepalese women (15-49) by severity

None 0.79 7.78 3.62 3.96 2.75 69.79 Neurological (Epilepsy) Associate 11.31 Physical Sensory Learning Behavioral/Social/Mood affect

Prevalence in Nepalese women (15-49) by type

5.1% 1.4% None Mild disability Moderate disability 14.4% 68.2% Severe disability Very Severe disability

10.8%

 Thank you for your attention!

Herat mosque