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COMMUNITY EYE CARE
Year : 2002  |  Volume : 50  |  Issue : 3  |  Page : 239-46

Fear of blindness and perceptions about blind people. The Andhra Pradesh eye disease study


International Centre for Advancement of Rural Eye Care, L.V. Prasad Eye Institute, Hyderabad, India

Correspondence Address:
P Giridhar
International Centre for Advancement of Rural Eye Care, L.V. Prasad Eye Institute, Hyderabad
India
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Source of Support: None, Conflict of Interest: None


PMID: 12355705

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Keywords: Adaptation, Psychological, Adolescent, Adult, Aged, Aged, 80 and over, Blindness, epidemiology, psychology, Comparative Study, Fear,


How to cite this article:
Giridhar P, Dandona R, Prasad MN, Kovai V, Dandona L. Fear of blindness and perceptions about blind people. The Andhra Pradesh eye disease study. Indian J Ophthalmol 2002;50:239

How to cite this URL:
Giridhar P, Dandona R, Prasad MN, Kovai V, Dandona L. Fear of blindness and perceptions about blind people. The Andhra Pradesh eye disease study. Indian J Ophthalmol [serial online] 2002 [cited 2020 Jun 3];50:239. Available from: http://www.ijo.in/text.asp?2002/50/3/239/14775



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We conducted the Andhra Pradesh Eye Disease Study (APEDS), a population-based study, from October 1996 to February 2000 in the Indian state of Andhra Pradesh. From this study, we have reported the prevalence of blindness (presenting visual acuity <6/60 or central visual field <20 degrees in the better eye) for the state as 1.84%.[1] The target groups in the population who were likely to be blind were identified in order to plan effective eye-care service delivery strategies.[1]

In addition to identifying these groups, it is also important to understand how the population perceives blindness. This information would enable planning of eye health promotion strategies that could help reduce blindness in the population. Little is known about the fear of blindness in the Indian population and the perceptions about blind people. We report these data for the Indian state of Andhra Pradesh.


  Materials and Methods Top



  Study design Top


A multi-stage random cluster sampling strategy was used to recruit participants for APEDS. A detailed description of study methods has been published previously.[1-8] In brief, one urban area (Hyderabad) and three rural areas (West Godavari, Adilabad and Mahabubnagar districts) were selected to represent the population of the state of Andhra Pradesh. A multistage sampling procedure was used to select 24 urban clusters and 70 rural clusters from the four study areas. The sampling strategy for the urban area and for the rural areas of APEDS has been described earlier.[1-8] The major difference between the urban and rural sampling was that the former was selected from blocks stratified by socioeconomic status and religion, whereas the latter were selected from villages stratified by caste as described previously.[1-8] The clusters were selected using stratified random sampling, such that the proportion of each socioeconomic status in the sample would be similar to that in the population of the state. Half of these clusters were randomly chosen to have participants only 30 years of age or more so that they represented 50% of the total sample. Participants were recruited by mapping the selected clusters. Every third to fifth household in the mapped cluster was then randomly selected dependent on the total number of households needed in each cluster, so as to obtain a similar number of households in all clusters. A total of 11,786 subjects were sampled with the aim of achieving a recruitment rate of at least 85%. A detailed questionnaire was administered by trained interviewers to obtain information about demographics, diet, ocular and systemic history, risk factors for eye diseases, visual function, quality of life, barriers to eye-care services, and knowledge and perception about eye diseases.[2] The data for subjects aged 15 years or less was collected from their parent or guardian. The participants thus interviewed were transported for ophthalmic examination; the examination was done by a clinical team well-trained in the study procedures. Written informed consent was obtained from all participants >15 years of age, and the consent for participants $#8804;15 years of age was taken from the parent or guardian. The study protocol was approved by the Ethics Committee of the L.V.Prasad Eye Institute Hyderabad, India.


  Fear of illness or disability Top


The fear of illness/disability including blindness was assessed for subjects >15 years of age by trained field investigators prior to the clinical examination. The fear of blindness was assessed in comparison to the fear of other illnesses and disabilities. The subjects were asked to respond to the questions based on their perception or understanding of the illness and disability being assessed. No attempt was made to explain the clinical aspects of any of the illnesses and disabilities assessed. The illnesses and disabilities were assessed using the terms used for these illnesses and disabilities in the two main local languages in this population (Telugu and Hindi).

First, the subjects were asked whether they feared cancer, severe mental illness, heart attack, losing limbs, blindness, deafness, inability to speak, and paralysis (in that order). Second, a question was asked to assess fear of blindness directly in comparison with the other disability. The subjects were asked which of the two conditions they feared more - being blind or being deaf; having paralysis or being blind; being blind or losing a limb, having severe mental illness or being blind, being blind or having cancer, suffering heart attack or being blind, and being blind or unable to speak (in that order). The position of blindness in the questions was alternated between first and last for each question. The comparison of blindness with cancer, heart attack, and ability to speak was assessed only in the rural study areas as these questions were added to the interview after the data collection in the urban study area had been completed.


  Perceptions about blind people Top


The subjects were asked whether they agreed or disagreed with the following statements about blind people prior to the clinical examination - blind people have to depend on sighted people to do most of their things; blind people can never really be happy; not much should be expected from a blind person; and losing one's sight means losing one's self. The response for each statement was documented.


  Statistical analysis Top


The data were entered in pre-coded forms by the investigators. Reliability was tested amongst the field investigators for administration of all the APEDS instruments in the pilot studies done both in urban and rural areas. [2, 5, 7, 8] The data were then entered in a FoxPro database and analysed using SPSS software programme (SPSS for Windows, Rel.10.0.5. 1999. Chicago: SPSS Inc.). The prevalence of fear of all the illnesses and disabilities assessed was adjusted for the age, gender, and urban-rural distribution in India for the year 2000, [9,10] to obtain composite estimates for the overall prevalence of illnesses and disabilities. The design effect of the sampling strategy was calculated using the prevalence of fear in each cluster,[11] and the 95% confidence intervals of the estimates were adjusted accordingly.

Univariate analysis using the chi-square test followed by multivariate analysis using multiple logistic regression were done to assess the demographic associations with the fear of blindness. The demographic variables included age, gender, education, socioeconomic status, and urban-rural residence. All the variables were introduced in the model simultaneously and none of the variables were optimised. The effect of each category of a multicategorical variable was assessed by keeping the first as the reference. Likely interaction between education and socioeconomic status was assessed in a separate multiple logistic model simultaneously with all the variables. The frequency distribution of the perceptions about blind people is reported.


  Results Top



  Study population Top


Of 11,786 eligible subjects of all ages, 10,293 (87.3%) participated in APEDS. Of these 10,293 subjects, 7,432 were >15 years of age and 5,441 (52.8%) were female. A total of 270 subjects >15 years of age were blind.


  Fear of illness or disability Top


The distribution of responses for fear of the illnesses and disabilities assessed for the urban and the rural study areas combined is shown in [Table - 1]. The age and gender adjusted prevalence for fear of the illnesses and disabilities assessed is shown in [Figure - 1].

The adjusted prevalence of fear of blindness was almost similar in the urban and rural study areas but the fear of all the other illnesses and disabilities was higher in the rural study areas as compared with the urban study area.


  Fear of blindness Top


The age-gender-adjusted prevalence of fear of blindness in the urban study area was 90.9% (95% confidence interval 89.1-92.8% design effect 1.97) and was 92.1% (95% confidence interval 90.6-93.6% design effect 4.3) in the rural study areas. The distribution of those who had fear of blindness (including those who were later clinically diagnosed to be blind) is shown in [Table - 2]. On applying multiple logistic regression, the odds of having fear of blindness were significantly higher for those with any level of education and for those living in the rural study areas. There was no significant association of fear of blindness with age, gender, and socioeconomic status. The interaction between education and socioeconomic status was not significant (odds ratio 0.77; 95% confidence interval 0.57-1.05). The results of multiple logistic regression were not different after excluding those who were later clinically diagnosed to be blind (data not shown).

The response about fear of blindness in direct comparison to the other disabilities is shown in [Figure - 2] and [Figure - 3] for the urban and rural study areas, respectively. The fear of blindness was higher compared to all the other illnesses and disabilities assessed in the urban and rural study areas. The proportion of those fearing blindness was the highest when compared with deafness than when blindness was compared with the other disabilities/illnesses in all the study areas.

However, even though the fear of blindness was high, its proportion reduced relatively when it was compared to mental illness and paralysis in the urban study area, and when compared to mental illness, paralysis, cancer, and heart attack in the rural study areas.


  Perceptions about blind people Top


The distribution of responses of those who were clinically not blind regarding perception of blind people are shown in [Figure - 4] and [Figure - 5] for the urban and rural study areas, respectively. More than 90% of those in the rural study areas agreed with all the four statements about blind people. The proportion of those disagreeing with the four statements was higher in the urban study area compared with the rural study areas. The highest proportion of disagreement related to the statements that blind people can never really be happy and losing one's sight means losing one's self in the urban study area.

The distribution of responses of those who were clinically diagnosed as blind regarding perception towards blind people is shown in [Figure - 6] and [Figure - 7] for the urban and rural study areas, respectively. More subjects in the urban study area disagreed with the statements that blind people can never really be happy and losing one's sight is losing one's self as compared with those in the rural study areas.


  Discussion Top


These are probably the first population-based data on fear of blindness and perceptions about blind people for India. These data can be extrapolated for the population of the state at large since APEDS was a population-based study with sampling representative of the population of the state of Andhra Pradesh.

A majority of participants >15 years of age in our population feared all the illnesses and disabilities assessed. Among all the disabilities/illnesses assessed, fear of blindness was the highest and that of deafness was the lowest. Even though the fear of blindness was the highest, it was not very different from all the other illnesses and disabilities except deafness and inability to speak. In an Australian study, cancer was the most feared illness by the Australians and the fear of blindness had increased in 1993 when compared to the year 1986.[12] The fear of illness has been reported to be common in population from the United States.[13]

It could be argued that these data are biased towards blindness as these were obtained as part of a study that assessed visual impairment. But vision is probably one of the most cherished senses and losing vision could mean not being able to recognise family and friends, requiring assistance with daily activities, feeling unsafe, and much more. The proportion of those who feared blindness in our population was very high when compared to losing a limb or being deaf, disabilities which probably result in lesser dependence when compared with blindness. However, the proportion of those who feared blindness decreased when it was compared to paralysis or mental illness, both of which could result in the need for significant assistance or dependence with the daily activities. In this background, if one compares blindness with the other illness and disabilities assessed, the impact of blindness is likely to be higher as it can lead to difficulty in perceiving one's surroundings. Hence, the fear of blindness being the highest in the population among all the disabilities/ illness assessed may not be unjustified. The psychological impact of blindness was more than hearing impairment on otherwise healthy individuals in another Australian study.[14] This study also warned that blindness related depression could even lead to suicide.[14]

Those with any level of education feared blindness more as compared with those with no education. It is possible that the literate are more aware of the illnesses and disabilities assessed, and the level of dependence that these disabilities can possibly cause, including blindness. The proportion of those who feared blindness was more than 90% for all the four socioeconomic status categories in this population. This finding is interesting because we have previously reported that those belonging to extreme lower socioeconomic status in this population had a higher prevalence of blindness as compared with the other socioeconomic strata.[1] These data suggest that blindness is feared across the population irrespective of socioeconomic strata. In a study done in the United States, those with lower income and education were more likely to fear illness and injuries.[13]

In the multivariate model, the odds of having fear of blindness were high in the rural study areas as compared with the urban study area even though the proportion of those fearing blindness was more than 90% in both the urban and rural study areas. This finding is significant because the prevalence of blindness in this population was higher in the rural study areas than in the urban study area.[1]

One issue relating to perceptions about blind people, which could not be captured in the questionnaire, was observed during the interview by the investigators (PGD, MNP, and KV). It was felt that majority of the people thought those to be blind who had disfigured eyes, white eyes, or no eyes. This perception could be because only those blind people who have disfigured eyes, white eyes, or no eyes are usually seen begging on the streets, as their disability is obvious to the public. These data on perceptions about blind people should be interpreted in this background even though the manner in which the eye-care community defines blindness is different.

The perceptions of those who were not clinically blind about people with blindness were very different in the urban and rural study areas. If disagreement with the statements assessed is considered as a positive feeling towards the blind people, the proportion of those with this positive feeling was higher in the urban study area. A study done in the rural areas of Ethiopia to assess the perceptions of blindness revealed that sighted people had many misconceptions about blindness.[15] About 77% of the sighted people interviewed said that they would object to a member of their family marrying a blind person while 80% said that they themselves would not marry a blind person, and only 14% of the sighted people were willing to employ a blind person.[15]

The perceptions about blind people by those who were blind were not very different between the urban and rural study areas in our study. The positive feeling was missing for the most part except that more of those in the urban study area disagreed that losing one's sight is losing one's self. In the study in Ethiopia, only 5% of the totally blind people wished to mix socially with sighted people, and only 19% said that they would have employed a blind person.[15] These data also suggest that the blind people had negative feelings towards blindness.

These data on fear of blindness and perception about blind people could be used in the eye health promotion strategies in order to reduce blindness. In this population, the prevalence of blindness (presenting visual acuity <6/60 or central visual field <20 degrees in the better eye) has been reported to be 1.84%.[1] Majority of this blindness was due to cataract and refractive error, which are easily treatable. However, blindness in lay terms probably relates to obvious disability, as suggested by the inputs from the population. The most obvious blindness is the one caused by the corneal diseases. The prevalence of blindness due to corneal diseases in this population was 0.13%, a majority of which was corneal scar due to childhood fever or keratitis.[1] We have also previously reported that prevalence of blindness due to corneal diseases was higher in the urban study area. The likely reason is that many of these corneal blind people had migrated from the rural areas to the urban area to make a living by begging on the streets.[1] This, again, highlights what the general public thinks blindness is.

The increased fear of blindness in this population is understandable if one looks at blindness in a manner that the population seems to perceive it. However, there seems to be little knowledge about blindness, as understood in the clinical terms, in our population. Increase in awareness about blindness is needed to reduce curable blindness. As part of eye health education strategies, information should be disseminated that in addition to those with visible structural deformities of the eyes, many others without such obvious deformities could also be blind, and that a large proportion of the latter may be curable.

The data on perception about blind people reflect the negative feelings about blind people by those who are not clinically blind and also by those who are blind themselves. There is a need to increase understanding and awareness in the population to promote better acceptance of the blind. Awareness regarding the availability of rehabilitation services should be increased in the population, especially for those who have a blind member in the family. People need to be aware that the incurable blind people can be taught skills that can help make their daily activities easier and also generate income. They should also be informed the existence of special schools for blind people. This would help decrease the dependence of the incurably blind on the family and community.

In conclusion, these data suggest that this population had considerable fear of the illnesses and disabilities assessed, including blindness, even though there is a relatively high prevalence of blindness in the population. This implies that there is an urgent need to increase public awareness about blindness, that a large amount of blindness can be covered or prevented, and about rehabilitation services for the incurably blind.


  Acknowledgements Top


The authors acknowledge the contributions of Ms. N. Rishita and Mr. S. Niranjan for data management. The authors acknowledge the support of Dr. Gullapalli N. Rao, L.V. Prasad Eye Institute, Hyderabad, and Assoc. Prof. Catherine A. McCarty and Prof. Hugh R. Taylor, Centre for Eye Research Australia, University of Melbourne, Melbourne, Australia.



 
  References Top

1.
Dandona L, Dandona R, Srinivas M, Giridhar P, Vilas K, Prasad MN, et al. Blindness in the Indian state of Andhra Pradesh. Invest Ophthalmol Vis Sci 2001;42:908-16.  Back to cited text no. 1
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2.
Dandona R, Dandona L, Naduvilath TJ, Nanda A, McCarty CA. Design of a population-based study of visual impairment in India: The Andhra Pradesh Eye Disease Study. Indian J Ophthalmol 1997;45:251-57.  Back to cited text no. 2
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Dandona L, Dandona R, Naduvilath TJ, McCarty CA, Nanda A, Srinivas M, et al. Is current eye-care-policy focus almost exclusively on cataract adequate to deal with blindness in India? Lancet 1998;351:1312-16.  Back to cited text no. 3
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Dandona L, Dandona R, Naduvilath TJ, McCarty CA, Srinivas M, Mandal P, et al. Burden of moderate visual impairment in an urban population in southern India. Ophthalmology 1999;106:497-504.  Back to cited text no. 4
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Dandona R, Dandona L, Naduvilath TJ, McCarty CA, Rao GN. Utilisation of eyecare services in an urban population in southern India: The Andhra Pradesh Eye Disease Study. Br J Ophthalmol 2000;84:22-27.  Back to cited text no. 5
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Dandona R, Dandona L, Naduvilath TJ, Srinivas M, McCarty CA, Rao GN. Refractive errors in an urban population in southern India: The Andhra Pradesh Eye Disease Study. Invest Ophthalmol Vis Sci 1999;40:2810-18.  Back to cited text no. 6
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Dandona R, Dandona L, John RK, McCarty CA, Rao GN. Awareness about eye diseases in an urban population in India. Bull World Health Organ 2001;79:96-102.  Back to cited text no. 7
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Dandona R, Dandona L, McCarty CA, Rao GN. Adaptation of WHOQOL as health-related quality of life instrument to develop a vision-specific instrument. Indian J Ophthalmol 2000;48:65-70.  Back to cited text no. 8
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US Census Bureau. International data base. http:// www.census.gov (accessed December 2000).  Back to cited text no. 9
    
10.
United Nations. World Urbanization Prospectus. New York: United Nations, 1998.  Back to cited text no. 10
    
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Bennett S, Woods T, Liyanage WM, Smith DL. A simplified general method for cluster-sample surveys of health in developing countries. Wld Hlth Statist Quart 1991;44:98-106.  Back to cited text no. 11
    
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Borland R, Donaghue N, Hill D. Illnesses that Australians most feared in 1986 and 1993. Aust J Public Health 1994;18:366-9.  Back to cited text no. 12
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Noyes R, Hartz AJ, Doebbeling CC, Malis RW, Happel RL, Werner LA, et al. Illness fears in the general population. Psychosom Med 2000;62:318-25.  Back to cited text no. 13
    
14.
De Leo D, Hickey PA, Meneghel G, Cantor CH. Blindness, fear of sight loss, and suicide. Psychosomatics 1999;40:339-44.  Back to cited text no. 14
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Alemayehu W, Tekle-Haimanot R, Forsgren L, Ekstedt. Perceptions of blindness. World Health Forum 1996;17:379-81.  Back to cited text no. 15
    


    Figures

  [Figure - 1], [Figure - 2], [Figure - 3], [Figure - 4], [Figure - 5], [Figure - 6], [Figure - 7]
 
 
    Tables

  [Table - 1], [Table - 2]


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