Preparations in the field for disability disaggregation data collection

Archana Bhambal, July 2014

“There is a dire need for a system to collect more and quality data on disability”

The suggestion that the North India office conduct a pilot in collecting disability disaggregated data excited me for two reasons.

Firstly because there is a dire need for a system to collect more and quality data on disability, and secondly so we know how many people with disabilities are benefiting from our eye care programmes.

My colleague Pauline Thivillier (working as Programme Delivery and Monitoring Officer in the global office) came up with the idea, and contacted me. I discussed the issue with my colleagues in the area office, and we have decided to try the pilot in a new eye health initiative in Bhopal District, Madhya Pradesh. Through this programme, a variety of sight-saving treatments and surgeries will be provided to people living in slum areas with the help of two partners: Arambh and Sewa Sadan Eye Hospital. Data will be collected at community level through outreach camps and vision centres and at base hospitals.

The project could help us get a better understanding of the disability scenario in the slum areas and also reach out to people with disabilities through our programme.

The data to be collected is based on the definition of disability and questionnaire developed by Washington Group on Disability Statistics (WG). However, as we started to conceptualise this into a project and discuss it with our partners, it seemed like we had wandered into deep waters with limited swimming skills! But the news coming from our global office that the pilot project was approved and we could go ahead made us commit to give it our best try.

Reviewing the data collection process and definitions

Concerns and issues regarding the data collection process were raised during the one-day consultation between Sightsavers and Partners of MP Urban Slum Programme.

As the Health Management Information System (HMIS) used to collect the standard data was already under development for the new eye health project, the integration of the WG questions into both paper and electronic formats was quite straightforward. It seemed realistic to be able to collect the additional information at the vision centres, as the number of patients attending would be limited. However, it was felt a different process would be required to collect the information at hospital outpatient departments where they see 250-300 patients every day. Partners were concerned that the extra data collection could disrupt the smooth flow of registration so it was decided the data would be collected by the receptionist, during registration, and that only new patients would be asked the WG questionnaire.

Ophthalmologists and clinical staff also had difficulty in understanding the social model and functional definition of disability used by the WG questionnaire which asks people if they experience difficulties in performing basic activities. The data on disability collected with the WG questionnaire is likely to be very different from the data collected on Disability in the Indian National Census,  2011 which asks if a person is physically or mentally disabled and what type of disability they have based on categories in seeing, hearing, speech, movement, mental retardation, mental illness, or any other multiple disability.

One of the challenges we foresee will be to convince the government to accept any data on disability based on the functional definition suggested by WG.

Training partner programme staff

We then held a two-day training workshop with our programme and partner staff who will be collecting the data on the use of the questionnaire, the process of data collection, analysis, and documentation.

The training was very helpful in building a clear understanding on disability and related issues and in understanding the questionnaire and functional definition of disability as specified by the WG. One of the things staff were asked to do is keep diaries over the course of the project in order to monitor and review how it’s working and provide qualitative feedback.

The key process that ensured they felt ownership of the data collection tool was their involvement in translating the questionnaire into Hindi. They then tested the tool in the slums on a sample of 40 people. This activity instilled confidence in the project staff and made them realise that data collection through the questionnaire can actually be integrated into the regular data collection process and does not take too much time. The process also helped in finalising the guidelines and format of data collection.

The testing revealed some issues with the translation as some words and questions were not understood by patients. To facilitate understanding, it was decided to split some of the questions up and change the wording of others.

Spending time in the early stages on preparing the programme team gave them the confidence to use the tools and go out into the community to discuss the pilot project.

Involving the community stakeholders, and added value

To ensure the participation and ownership of selected community stakeholders we held another day of orientation on the disability disaggregation project, including disability awareness and a brief introduction on the WG questionnaire. It was attended by 44 participants including Auxiliary Nurse Midwife (ANM), Anganwadi Worker (AWW), members of Slum committees/Community Based Organisations (CBOs) and Ward Corporator.

This led to an active participation and enthusiasm from the stakeholders in supporting the MP Urban Slum Programme and disability disaggregation project for which action plans were developed. It will also ensure they take ownership and that the project is embedded in local ways of working, leading to more sustainable long term outcomes.

The project will last for one year and a mid-term review will be carried out in November when we look forward to sharing more about what we have learned through the data collection process and the experiences of the staff working on the project.

By Archana Bhambal, Sightsavers’ Area Director in India

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