Identifying disability: comparing house-to-house survey and Rapid Rural Appraisal

1. Identifying disability: comparing house-to-house survey and Rapid Rural Appraisal SHYAMA KURUVILLA AND ABRAHAM JOSEPH Community Medicine Department, Christian Medical College, Vellore HEALTH POLICY AND PLANNING; 14(2): 182–190

2. Introduction World Health Organization - 10% of the people in any community have disabilities. Varying estimations of the prevalence of disability all over the world The identities of the people with disabilities and the impact of disablement on their lives, however, have rarely been determined The Community Health and Development Program (CHAD) of the Christian Medical College, Vellore extends its services to over 100 000 people living in 82 villages within the Kaniyambadi Block. Currently less than 1% of these individuals have been identified to have a disability, Previous studies in this area – Prevalence of 1.2% to 12.9%

3. INTRODUCTION …….. A comprehensive cognizance of disablement - Extensive interaction between local and professional knowledge The potential contribution of people with disabilities and their immediate families, who together may account for about 40% of the population, has yet to be fully realized. Ambiguousdefinitions and insufficientcontextual information have significantly impeded the rehabilitative process In India, approximately 70% of the disabling conditions are preventable.

4. OBJECTIVE To compare two approaches to the identification of people with disabilities: 1) House-to-house survey, based on local census data; and 2) Rapid Rural Appraisal (RRA), based on a participatory research model Learning Objective To learn about Qualitative research – RRA and Social Mapping

5. METHODOLOGY Study design Comparative study of two methods used to identify people with disabilities. Study population In order to ensure that common disabilities would be identified in this study, it was necessary to calculate a target size for the population. As it was known that ‘difficulty learning’ was one of the disability categories of lowest prevalence (approximately 2%), In order to estimate the prevalence rates with a 99% confidence interval the study population was required to be at least 5202. About 1600 houses had to be included in the study in order to ensure that more than 5000 individuals would be screened for disability.

6. Sampling Survey : Conducted by the CHAD health auxiliaries( involved with health and rehabilitation programmes in the Kaniyambadi Block for over 10 years.) Health auxiliaries were purposively assigned the villages they were most familiar with (often the villages in which they lived) to survey. This purposive sample was chosen with a view to facilitating the best possible identification in the house-to-house survey. The health auxiliaries each surveyed a group of 100 houses in their assigned village so that caste communities, schedule castes, and areas with migratory populations were all represented. Final study sample included 5968 people.

7. MEASURES OF DISABILITY Disability The World Health Organization (WHO) defines disability as ‘any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being. Degree of disability Occupational therapists’ assessments of the situational limitations of the people identified to have disabilities, compared with local social norms for age and gender, in the areas of self-care, communication, growth and development, Social activities (including vocation)were used to determine whether the disability was mild, moderate, or severe.

8. MEASURES OF DISABILITY Type of disability i) difficulty seeing ii) difficulty hearing and speaking iii) difficulty moving [further clarified by: difficulty walking, difficulty using hands, and pain in the back or joints that affected work], iv) no feeling in the hands and feet v) strange behaviour vi) fits vii) difficulty learning viii) other disabilities.’ For rehabilitative purposes, people identified were classified into : 0 to 5 years – Pre-school 6 to 15 years – School 16 to 45 years – Pre-vocational training and vocation 46 years and above – Consolidation and Retirement

9. METHODS House-to-house survey • 3 components: a map, a census, and a household type questionnaire • The study area represented on a map depicting the roads, houses, and important landmarks in the area • Members of this area were defined as persons whose usual residence was a household within the selected area. • A census was used to enumerate the population. • A household type questionnaire was used to identify people with disabilities. Rapid rural appraisal (RRA) • Attitude and a method to assess some aspect of local reality in a relatively short period of time • Secondary data review, direct observation, semi-structured interviews, analytical games, diagramming (including cartooning, seasonality diagramming, body mapping, and social mapping) • Process is documented by recording specific details: the location of the appraisal, the number of participants, group dynamics, and other pertinent features • Key words and verbatim quotes are noted

10. PROCEDURES House-to-house survey Health auxiliaries were trained in the use of the questionnaire. Definitions and concepts for this study were explained and discussed. Over a 2-week period, each health auxiliary mapped out her selected area of 100 houses, conducted a census, and filled out the questionnaire on disabling conditions in each household. Respondent : Adult member of the household who was home at time of the survey. The map was used to outline the location for the RRA. The data from census and questionnaire were analyzed only after the RRA in that area was concluded.

11. Rapid rural appraisal Starting two weeks after the house-to-house survey, the RRA was implemented in each of the 16 selected areas. The multidisciplinary team that facilitated the RRA included an Occupational therapist, Social worker, Community health nurse, Medical doctor.

12. Social-mapping 1 . The respondents mapped the area being considered using sticks, ‘colum’ powder, or pencil and paper. Larger maps facilitated greater interaction. 2. Each category of disability was represented symbolically (e.g. a red flower for ‘difficulty seeing’ or a twig for ‘difficulty walking’). 3. These symbols were then placed in the houses on the map where somebody had that particular disabling condition. 4. Respondents discussed and modified this conceptualization until a consensus was reached. 5. This information was then transferred onto a chart.

14. Semi-structured interviews Informal discussions were conducted. During this phase of the RRA, people who had been identified to have disabilities were often called to participate. A flexible checklist guided the discussion during which notes were taken. Interviews usually lasted between 30 and 90 minutes.

15. Direct observation Members of team formed perceptions about some aspects of behavior, and components of cultural and physical environments in the community. These impressions were then collated Local dais (trained mid-wives), tea-shop owners, school teachers, and nutrition workers were some of the obvious respondents. As the team walked through the villages, older men and women sitting in cool verandahs, girls in a craft centre, boys outside a cycle shop, young adults in the fields, and other individuals encountered, were requested to participate in the RRA.

16. Post-identification verification visits All individuals identified as disabled : Visited by two occupational therapists. Therapists confirmed the disability (if present) and assigned each individual to a category of mild, moderate, or severe degree of disability after an assessment. Accuracy (or correctness) of the methods in identifying disability was determined using pre- and post-verification data. Both the RRA and the survey- not identified over ten people with disabilities

17. DATA MANAGEMENT AND ANALYSIS Data collected from the house-to-house survey and the social mapping in the RRA were organized using the Fox Pro software22 package and analyzed using the SPSS/PC+ software. The criterion for identification of disability was the type of disability. The analysis included both the types of disability as well as the number of people who had these disabilities. The team discussed and analyzed the semi-structured interviews and direct observation subsequent to each RRA

24. COMPARISON OF BOTH METHODS

25. COMPARISON

26. Conclusions Factors that influenced identification : Local perceptions and definitions of disability; Social dynamics, particularly those of gender and age; Relationships within RRA groups and between health auxiliary and the respondents in the house-to-house survey; and Type of disability and associated social implications and stigma of that disability There was an under-ascertainment of disability in both methods. Social meanings and perceptions primarily determined type of information gathered. RRA provided a better forum for the exchange of information between the researchers and the local respondents. The RRA promoted community awareness and participation in the process of identification of disability

27. Recommendations No single one method to comprehensively identify all people with disabilities in community A combination of methods would be the most effective approach Rapid rural appraisal- Good method to facilitate community awareness about disability and participation in the rehabilitation process. Effectively used to identify people with relatively obvious ‘difficulty seeing’, ‘difficulty hearing and speaking’, ‘difficulty moving’, ‘difficulty learning’, and ‘other disabilities Screening methods- A standardized, simple screening tool, like the Trivandrum Developmental Screening Chart, would need to be employed to screen all children under the age of two for disability.

28. LIMITATIONS OF STUDY Purposive sample (of the villages the health auxiliaries were most familiar with) was chosen A random sample might have provided quite different results. The procedure for conducting the RRAs was not uniform, but context dependent. The categories used to identify disability were broad and the measurement procedures were not standardized Using the categories or types of disability as identification tool also posed the additional problem of accounting for people who had more than one type of disability.

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