The Survey (Por Fin!)

If you haven’t already gathered… Peruvian culture has an interesting juxtaposition of a slow, laid-back lifestyle combined with a unique amount of regulations, red tape and official processes, stamps, logos, fingerprints, certificates… for EVERYTHING. The other day I was at a meeting where we had to stay an hour afterward to submit an official letter to approve the official note taking during the meeting. (What?!) The visa process itself is a whole other story (right, Cathleen?!) And I won’t go into the headache of preparing for an international continuing education conference. Yes, being dropped down into the Latin American culture inevitably will strengthen the patience of any individual who spends much time here. With the combination of a slower daily pace and the necessity of a mountain of official documents, everything just takes that much longer. But it’s good for my character, right?

I’m happy to say that patience with work projects is finally paying off. In November I began a project to create and apply a survey for persons with disabilities. In December the survey was complete. In February we did the pilot study. Last month we presented the survey to a disability committee at the Peru Ministry of Health to gain feedback. And, finally, over the last few weeks, we had the training and then applied the survey, with the help of a group of nursing student volunteers, in Sector Bellavista (pop. ~16,000). Not quite the timeline we had hoped for, but all things considered that’s not too bad for Peru!

resident of Sector Bellavista

The whole process has been an incredible learning experience. We had a lot of preparations – creating a manual for volunteers who will apply the tool, taking photos and making official identification for each volunteer, mapping out each section of the sector, figuring out who will go where and the codes they will use, informed consent. Copies of everything, supplies and snacks, monetary compensation for transportation, etc etc. Not to mention the two-day training of our volunteers. I am so lucky to be working with CMMB’s program coordinator for Peru, who was the driving force behind so much of this project - it definitely would not have happened without her.

We had a number of challenges come up. For one, because the neighborhood is known to be dangerous, our volunteers wanted to go out in pairs, which extended our timeline. Second, last week the sector had an outbreak of Hemorrhagic Dengue, so some of our volunteers were recruited to go out to homes and educate/treat water instead of helping with our survey (and rightfully so!) And third, we had no screening process for volunteers and the students happened to have exams the same week, so thus we encountered some challenges with the motivation of volunteers, their aptitude in administration of the tool and the quality of data received. We had to meticulously check and double-check through each page of each survey for missing information.

Training of our volunteers

Though it was an exhausting process, especially on top of my other clinical work commitments, it was also a nice change of routine. My favorite part was the “field work” – going door to door to identify people with disabilities and administer the survey. The part of the neighborhood that sits at the base of the mountain is an area of significant poverty. It was very humbling to walk around an area where the road is sand, the homes are barely standing with roofs made of flimsy thatched straw, there are no bathrooms nor electricity and the only source of water is a bucket from a vehicle that comes by every morning. The residents of the sector did not hide their shocked surprised to have a gringa wandering around their neighborhood! (Fortunately, my only negative encounter was an angry guard dog – but I fended him off!)

It was absolutely heart-breaking to hear the responses of people surveyed- many who are illiterate, don’t have any idea how old they are, never leave the home, and have little to no access to food, caregivers or healthcare. I encountered many children who looked neglected, and a kid with Down Syndrome who neighbors said had no caregiver the majority of time – I found him standing alone in a pile of sand. Many people interviewed say that they live in fear that either they will be robbed, harmed by gang members, or that the roof will literally collapse on top of them. One report described a 100-year old woman who is blind, unable to walk, hasn’t left the home in years and only receives food twice a week from her daughter who stops by for a few minutes to drop it off. Reading through completed surveys literally brought me to tears. I can’t help but compare cases to patients I’ve had in the US who - with the same exact disability - have a much higher quality of life, simply for socioeconomic reasons. On a more positive note, the residents were really friendly and I enjoyed a new glimpse into the daily life of Peruvians.

resident of Sector Bellavista

We are not through with data entry and will have to wait awhile for all of the results, but it’s clear that we are under the estimates for the national prevalence of disability. We are missing identification of people with disabilities – though it’s not yet clear if our volunteers were mistaken in their definition of disability, have missed houses, or if the residents simply weren’t home when they came by (twice).

While our study itself may have several confounding variables from a statistical standpoint, I still know that the information we receive will be incredibly valuable from a community based rehabilitation perspective. I will soon have answers to questions like - What resources are currently available? What does the community need the most? And what types of resources would they actually use if available? I’ll be using the data to create an intervention plan and now that I’ve gotten to know more people in the sector, I’m even more excited to get to work! From this process, we will also be able to fine-tune certain areas for (hopeful) future application of the survey on a grander scale in Peru.

Someone recently pointed out that I’m receiving a glimpse into so many different levels of the system – the poorest of the poor in their homes, middle class patients coming to the clinic, all the way up to the political level though the Ministry of Health. I’m counting my many blessings here and feel so lucky to be able to be part of these types of sustainable projects!