A potentially damaging survey on leprosy is modified after concerned parties intervene.
GGeared toward a medical agenda, leprosy control programs find it difficult to manage social issues related to the disease. But for individuals with leprosy or its aftermath, social, economic and psychological needs often take precedence over medical needs.
Stigma and discrimination are important consequences of leprosy. They exist in the context of a public that is ill-informed and programs that are ill-prepared.
Today there are increasing efforts by well-meaning, socially-minded medical experts to study and understand stigma and its ramifications. Protocols and questionnaires have been developed even though their internal validity remains unclear. Sociologists wonder whether questionnaires for assessing stigma hurriedly prepared and hastily introduced might not have a negative impact.
The fact is, people are always eager to measure something or other. Stigma is no exception. But nothing can be more harmful than an amateurish, makeshift attempt to do so. When such an attempt is made, prompt intervention by informed individuals is required before the damage is done. Nothing exemplifies this better than an episode that occurred recently in India.
It all started when people affected by leprosy petitioned Parliament in 2008 to make an assessment of their living conditions, especially the conditions of those living in self-settled colonies. A Parliamentary sub-committee was formed that visited colonies in different states, observed conditions and interacted with the people there.
Based on the report of the committee, Parliament asked the health ministry to undertake an exercise to assess the leprosy burden in the country. An autonomous governmental body was given the responsibility of designing the protocol. It was pilot-tested in one of the North Indian states and the final protocol, including methodology, was prepared.
The whole exercise was called the National Sample Survey. Under this, house-to-house surveys would be carried out in randomly selected districts and blocks in 33 states to identify new leprosy cases.
The survey protocol also included four questionnaires to assess stigma and discrimination. These had been prepared by medical experts who perhaps had less insight into sociological issues. Moreover, it was doubtful whether persons affected by leprosy had been consulted, even though they were the reason why the whole exercise had been planned.
The questionnaires were meant to be applied to new cases detected during the National Sample Survey, as well as their neighbors, prominent elders from their communities, and other randomly selected community members.
However, several questions could be regarded as stigmatizing, and would be bound to encourage negative attitudes and undermine the spirits of people affected by the disease.
A few voices were raised in protest. As the coordinator for India of the International Federation of Anti-Leprosy Associations (ILEP), I appealed to the government to have a discussion with a few experts in sociology and also with Dr. P.K. Gopal, the president of the National Forum (a nationwide network of people affected by leprosy) who had experience of using standard questions to solicit information on stigma from the general community.
The government also became convinced of the need for a critical review of the questionnaires and invited Dr. Gopal and me, along with the director of the government agency responsible for the protocol and its implementation, for talks.
Open and frank discussion led to the firm conviction that the questionnaires deserved a thorough overhaul. It was decided to discard two of the questionnaires and retain two: one for persons affected by leprosy (but for use on patients under treatment, not new cases detected during the survey, as envisaged earlier) and randomly selected persons from the community.
All present realized the naivety of asking someone newly detected with leprosy about relations with their spouse, problems they experience in society and difficulties in marrying off their children. Similarly, questions for neighbors about their readiness to live next to someone affected by leprosy, or for village leaders as to whether a leprosy-affected person should be isolated, or whether a leprosy-affected woman should breastfeed her baby, reflected profound ignorance and indifference. As a result, the questionnaires were radically altered. All questions with negative connotations were removed or modified.
The modified questionnaires were sent to all states concerned, accompanied by detailed guidelines on how they were to be used. Even though some people still expressed unhappiness with them, they were at least satisfied that the offensive elements in the original questionnaires had been removed.
Change is possible, if the informed also act.
Dr. Padebattu Krishnamurthy is Secretary, Damien Foundation India Trust, and Coordinator for India, International Federation of Anti-Leprosy Associations (ILEP)