Pilot Study!

Last week we had our pilot study for the survey of persons with disabilities. I created the survey back in December based on a combination of questions similar to those from the US-based National Health Interview Survey for Persons with Disabilities (1995) and from cultural observations/interviews. Fortunately I had a lot of help with translating and getting the correct wording down in Spanish, and we added and subtracted items according to cultural relevance. (For example, “Do you drive?” or questions about scooters/motorized wheelchairs and artificial limbs don’t quite apply here.)

The last several weeks were busy with recruiting participants and training our “Encuestadores” – a group of medical students – to apply the survey. Because the tool is brand new, the purpose of this “practice round” was to make sure the questions were ordered and worded properly – to assess participant understanding and content feedback, and also to assess the ease of use for the volunteers asking the questions. The adult survey is about 40 minutes long and the one for children (caregivers) is about 30 minutes long. I was worried that those interviewed would feel that the survey was too long, but from commentaries afterward it seemed to be fine.

The best part of the afternoon was getting to know the participants – many of whom graciously waited for hours in the heat to participate. We were looking for 15-20 participants and about 50 showed up! Needless to say, we had a large outpouring of support from the community. This is the first survey encountered in Perú that delves beyond simply identifying diagnoses to include in-depth questions about access, functional mobility and quality of life for persons with disabilities. The questions cover areas of the home environment, transportation, social activities, work history, education, social assistance, adaptive equipment, medications, functional mobility, health opinions/actions, etc. It was fun to finally see the tool in action and once we fine-tune it a bit more, we will apply it to Sector Bellavista of La Esperanza (about 17,000 potential homes) in April.