|Social and Economic Barriers to Cataract Surgery in Rural South India : A Preliminary Report|
PADMASHREE G. VENKATASWAMY, M.S., D.O.
Twenty-one (26.6%) of those interviewed were aphakic (had had surgical removal of the lens). Of these, nine were unilaterally aphakic at the time of the screening camp, and had not followed the ophthalmologsts' recommendation for surgery in the other eye. Thus only 12 (14.6%) could be said to have adopted the surgical advice given earlier. Of the twelve who had surgery following a screening camp, all but nine had the operation at government facilities, two at Aravind.
The aphakics traveled an average of 13miles to reach surgery and reported a short delay (mean 5.5 months) between having decided to have surgery and the actual operation. All had consulted their relatives and none came in the face of family opposition. Half were accompanied by a relative to the operation, a third came alone.
All of the non-aphakics in this study (those who had not had surgical removal of cataract) recalled being advised to have surgery. Seventy-five percent of those interviewed knew the cause of their visual impairment to be cataract. The remainder attributed it either to old age. or did not know. Eight-one percent believed cataract could be cured, four percent felt it could not, the remainder did not know. Fifty percent knew an individual who had had cataract surgery and only thirteen percent reported a unsuccessful outcome. Seventy-seven percent of the subjects learned about surgery through a staff member of the Aravind Hospital. These findings indicate that in this area, cataract surgery is an innovation which is increasingly well known throughout the countryside. The source of the information was both health workers and former patients.
Anecdotal information from both South and North India states that cataract patients often wait until the lens is mature or "ripe" before coming for surgery. Respondents were thus asked when was the best time to come for surgery: 75% said it should be done when sight begins to fail. However, when asked later why they had not come for surgery. 26%said it was because they were waiting for the cataract to mature. This indicates an important gap between beliefs about surgery in general, and the patients' belief about his own situation. Only 29% thought the surgery was painful, and only 1% gave fear as a reason for not having had the operation. Fear of the procedure due to pain was apparently not a major deterrent.
Eighty-one percent of those who had not yet had cataract surgery said they wanted the operation. When asked why they had not yet had the operation, three major categories of barriers emerged: economic, socio-psychological and educational. Among the economic reasons were cost of food (patients are hospitalized or remain in eye camps for seven days following surgery. Even where hospital surgery isfree, patients are commonly asked to provide their own food during their stay), patient's being the sole support of the family, or cost of transportation. Psycho-social barriers cited were fear of surgery, lack of someone to accompany the patient, failure to consult the family, or family opposition to surgery. The major educational barrier was the belief that the patient should wait until the cataract was mature before having surgery. The distribution of these reasonsisshown in Table 2. Economic barriers formed the largest category of replies (37.8%), while psychosocial or informational barriers were each cited by a quarter of the respondents. The single most common reason given was waiting for the lens to mature.
Several interview items asked about the deciSion-making processleading to surgery. Eighty percent of the respondents had discussedhaving surgery with relatives, only 1.3% with health workers. The remainder did not consult anyone. Only 11% (all nonaphakic) said their family did not approve of surgery, citing as reasonscost of food, patient's age, and fear of surgery. This would indicate, as doesthe fact that none of the aphakics came in the face of family opposition, that family approval is a necessary but not sufficient precondition for acceptance of surgery.
Villagers' reluctance to accept surgery is often attributed to a traditional, "fatalistic" outlook which precludes individual efforts to regain or retain health. However, responses to questions on this topic did not support such preconceptions. Eighty-seven percent of those interviewed felt one could avoid illnessthrough ones own efforts, and only 10%said illnesscould not be avoided. The sample was evenly divided in beliefs about the role of destiny in determining the events in one's life. Fifty percent believed they could control their lives through their efforts and 48.8% said all was due to fate.
UN Declaration on the Rights of Disabled Persons
Aphakics and nonaphakics were compared to see if there were systematic differences between these groups on either demographic or attitudinal variables. However, aphakics and nonaphakics in this study did not differ in age, se.'(,caste, history of recent illness, literacy, or ownership of radio. These preliminary findings do not depict the aphakics as innovators within the framework described by Rogers (Rogers and Shoemaker 1971): that is, more educated, with greater media exposure and social support, and upwardly mobile.
Aphakics and nonaphakics did differ in family opposition reported, (none reported among aphakics, vs. 11% among nonaphakics) and in beliefs about avoidability of illness.All aphakics felt illness could be avoided, but only 82.5 % of nonaphakics believed so.
This item reflects the concept of "health locus of control," that is, one's belief in the ability to actively maintain health. The individuals who elect cataract surgery may have stronger feelings of self-determination in health related matters than those who do not. This belief, along with family support and accurate information about the surgical procedure, maybe one of the important correlates of use of cataract surgery.
The results of the survey indicated relatively low (14.6%) adoption rate of cataract surgery among the. target population. Despite the fact that most individuals interviewed said they wanted to have the operation, a variety of barriers kept them from having surgery. These barriers-economic, psycho-social and informational-have important implications for community education programs if the rate of cataract surgery use is to be increased.
Economic factors can be addressed by provision of free food to patients after surgery and providing free transportation to the operation site. The provision of transport and personal assistants after surgery would address the problem of Mnoone to accompany the patients." Informational barriers can be overome by health education messages, explaining that cataract patients should not wait until the lenses mature before having surgery. Health education materials can also be used to explain how the procedure is done and to reduce fears about surgery. Aphakics from a village have been successfully used as health promoters in this regard.
Reports of family opposition to cataract surgery indicate that health education efforts should be targeted to include the family of the cataract patients, especially the spouse or eldest child. Often cataract patients come alone to the screening camp and the spouse or eldest child who acts as decision maker in the family, may not be told by the patient that surgery has been advised. It might prove useful to give a patient who has been advised to have surgery, a notice card to be shared with the relatives, explaining what the doctor has recommended, where treatment is available, and so on. Finally, the low utilization rate of cataract surgery indicates the need for follow-up work in the village to discuss with cataract patients problems that keep them from having their sight restored.
While the present study did reveal some attitudinal variations between those accepting and those rejecting surgery, further study is needed to identify in more detail why some patients come for surgery and others do not.