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COMMUNITY EYE CARE
Year : 2003  |  Volume : 51  |  Issue : 3  |  Page : 273-277

Utilisation of community-based rehabilitation services for incurably blind persons in a rural population of southern India


Aravind Medical Research Foundation, Madurai, Tamil Nadu, India

Correspondence Address:
V Vijayakumar
Aravind Medical Research Foundation, Madurai, Tamil Nadu
India
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Source of Support: None, Conflict of Interest: None


PMID: 14601859

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  Abstract 

Purpose: To identify barriers in utilisation of community based rehabilitation (CBR) services for incurably blind persons in rural South India. Methods: A community-based rehabilitation programme for incurably blind persons was initiated in Theni district of southern Tamil Nadu in south India. After door-to-door enumeration and preliminary ocular screening by trained workers at the village, identified blind persons were categorised as either curable or incurable by an ophthalmologist. Trained workers provided rehabilitation, including mobility training (OM), training to perform activities of daily living (ADL), and economic rehabilitation for the incurably blind in their respective villages. Results: Of the 460,984 persons surveyed, 400 (0.09%) were certified as incurably blind including 156 (39.00%) persons blind from birth. Social rehabilitation was provided for 268 (67.00%) incurably blind persons. Economic rehabilitation was provided to 96 persons, and integrated education to 22 children. Nearly one-fifth (n=68,17.00%) of incurably blind persons refused the services provided. The major reasons for refusal included old age and other illnesses (41.18%), and multiple handicaps (19.12%). Twenty-seven (6.75%) persons had either migrated or died, and 29 (7.25%) persons were already able to function independently.
Conclusion: Although CBR programmes provide useful services to the incurably blind, a better understanding of barriers is required to improve service utilisation. Developing a standardised data collection format for every CBR programme can result in the creation of a national database of ophthalmic diseases.

Keywords: Community rehabilitation, blindness, utilisation barriers


How to cite this article:
Vijayakumar V, Datta D, Karthika A, Thulasiraj RD, Nirmalan PK. Utilisation of community-based rehabilitation services for incurably blind persons in a rural population of southern India. Indian J Ophthalmol 2003;51:273-7

How to cite this URL:
Vijayakumar V, Datta D, Karthika A, Thulasiraj RD, Nirmalan PK. Utilisation of community-based rehabilitation services for incurably blind persons in a rural population of southern India. Indian J Ophthalmol [serial online] 2003 [cited 2019 Dec 14];51:273-7. Available from: http://www.ijo.in/text.asp?2003/51/3/273/14666



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The presence of a large number of blind people in India has tremendous economic implications for the nation. It is estimated that the economic burden of blindness in India is approximately equivalent to 73% of the annual expenditure set aside by the government for the entire health care sector in a year.[1] It is approximately US $4.4 billion per year. [2],[3],[4],[5] Attempts to address the burden of blindness in India and its economic implications have focused on reducing the burden of curable blindness in India primarily through a cataract-centered policy aimed at increasing the number of cataract surgeries in India.[6],[7] Recent studies have however reported on the inadequate quality of cataract surgery from various parts of India with up to 50% of cataract operated persons remaining blind even after surgery, and have led to an additional focus on improving quality of care. [8],[9],[10] The programmes for control of blindness in India have not focused on providing rehabilitative services for the incurably blind along with efforts aimed at improving the quality of clinical care. Although certain community based rehabilitation (CBR) programmes exist in India, rehabilitative services are usually provided through tertiary care centers. Currently data are not available for barriers that may prevent optimal utilisation of rehabilitative programmes.


  Material and Methods Top


We initiated a community-based rehabilitation (CBR) programme in Theni, a rural district­ of southern India, using a protocol developed by Sight Savers International, UK. The focus of this programme was to train incurably blind persons to be economically and functionally independent. We divided Theni district into three main clusters based on existing census records, such that each main cluster had a population range of 200, 000 to 250, 000. The main cluster was further divided into 10th subclusters. We recruited workers who had completed at least 10th grade schooling from within the identified subclusters for the fieldwork. The field workers were trained in two stages. The first stage involved a two-week training programme focusing on primary eye care. In the second stage, field workers received an additional month of training to equip them with the skills necessary to provide rehabilitation for the incurably blind, including sighted guide techniques.

The field workers did a door-to-door enumeration in their respective subclusters, and collected demographic information from respondents and elicited information regarding any ocular complaints after obtaining the necessary verbal informed consent. On completion of this preliminary data collection, a team comprising an ophthalmologist and an ophthalmic assistant from the base hospital (Aravind Eye Hospital, Theni) visited the subcluster and screened all subjects with ocular complaints identified by the field worker. Subjects identified as requiring further treatment were offered treatment at the base hospital. All incurably blind persons were re-assessed at the base hospital. These tests included visual acuity, refraction, slitlamp biomicroscopy for anterior segment, dilated fundus examinations using 90D lens at the slitlamp, direct ophthalmoscopy and indirect ophthalmoscopy with a 20D lens, prior to being certified as incurably blind. Blindness was defined as best corrected visual acuity < 6/60 in the better eye (the Indian definition of blindness).

After certification by the ophthalmologist, the field worker initiated rehabilitation for the incurably blind in their home or community. Rehabilitation was tailored to the needs of each individual and included skills for orientation and mobility, skills for activities of daily living and economic rehabilitation. Orientation and mobility training included imparting skills so as to be able to locate oneself within the surrounding environment, and move in the environment from one place to another. Daily living skills included skills required for independently handling personal hygiene, dress, cleaning the house, cooking, shopping, and doing the laundry, among others. Economic rehabilitation focused on providing skills to run a trade, economic activity or profession either in the organised or in the unorganised sector, such that monetary compensation was obtained. Activities that had the potential for sustainability within the local environment were chosen for economic rehabilitation. These activities included setting up small business ventures within villages, agriculture training, rural crafts including manufacturing baskets, brooms, chairs, and animal rearing. Economic rehabilitation was provided with the active support of the local community The social workers sourced part of the funds needed for the activity from the local community. Economic rehabilitation was not provided for persons below 15 years or above 70 years of age.

Parents of children of school-going age (5 - 15 years) who were certified incurably blind were encouraged to admit their wards in "regular" schools in their own villages as opposed to schools for the blind. We appointed itinerant teachers as part of the programme who traveled from school-to-school imparting training including pre-Braille activities, Braille, orientation and mobility, personal care and also provided large-size printing materials for children with low vision. Each itinerant teacher had a maximum of 8 children under their care.

We used the STATA statistical package version 7.0 (College Station, Texas, USA) for statistical analysis. All bivariate analysis was done using chi-square or Fisher's exact test where appropriate. P-values <0.05 were taken to indicate statistical significance.

This project was conducted after obtaining the appropriate clearance from the Institutional Review Board of Aravind Medical Research Foundation, Aravind Eye Care System, Madurai, India.


  Results Top


We screened a population of 460,984 persons between May 1996 and December 1999. Four hundred persons (0.09%) were certified incurably blind. The median age of incurably blind persons was 40.0 years (range 5-90 years, mean 41.71 years) and 227 (56.75%) were males [Table - 1]. The onset of blindness was ­15 years in 223 (55.75%) subjects. The median duration of blindness was 20 years (range <1 year to 85 years). Age of onset (P=0.001) was significantly associated with incurable blindness. Gender was not associated with incurable blindness (P=0.53). Curable blindness, primarily cataract blindness, was present in an additional 1500 subjects.

The best-corrected visual acuity in the better eye was <1/60 for 90% of the subjects. A sizeable proportion of incurable blindness was due to corneal diseases (n=80) and globe disorders including phthisis (n=79) [Figure - 1].

We provided rehabilitation for 268 (67.00%) persons [Table - 2]. The average duration of a rehabilitative cycle for a single person was approximately 230 hours (this includes time taken to obtain necessary passes and other administrative benefits). Rehabilitative services were not provided to 132 persons (33.00%). This included 8 persons who are to be rehabilitated in the next phase of the project, 20 (5.00%) students, 9 persons (2.25%) already engaged in economically productive activities, and 3 (0.75%) persons who discontinued their training. Seventeen (4.25%) of the incurably blind had migrated out of the project area prior to receiving rehabilitative training, and 7 (1.75%) persons had expired.

Sixty-eight (17.00%) persons refused rehabilitation; 28 (41.2%) persons cited old age coupled with other systemic illness as the reason for refusing services [Table - 3]. There was no gender difference for accepting rehabilitation services. After adjusting for age and gender, persons with duration of blindness >20 years were less likely to accept rehabilitative services (OR 0.5, 95%CI: 0.25, 0.92).


  Discussion Top


Data from our study suggest that community-based rehabilitation may be a viable alternative to the current tertiary care approach prevalent in developing economies to provide services to the incurably blind. If we excluded those who refused because they were either ill from other systemic diseases and/or old, and those who were not rehabilitated because of multi-system handicaps including mental retardation (we did not have the necessary expertise to provide rehabilitation for such subjects), only 24 (6.00%) of the 400 eligible persons actually refused rehabilitation. The coverage of rehabilitative services can possibly be increased further if the field workers are trained to rehabilitate persons with multiple disabilities.

The lack of sufficient special schools for the blind, the residential nature of such schools, and their location away from the family often results in a lack of education for children who are blind. Integrating children who are blind with their peers in a normal educational system expands the scope to provide education, besides contributing to for a better societal understanding of the needs of a blind person. The fact that we were able to encourage 22 children to pursue their education suggests the need for such services.

Nearly 40% of the eligible subjects were trained in the skills necessary for an economically productive activity Economic rehabilitation required part of the startup funds to be sourced from the local community; we could not provide economic rehabilitation for nearly 60% of those eligible who accepted rehabilitation services due to difficulties in organising the startup funds. The fact that over one-third of the eligible subjects received this support from their community indicates that there is some support for the blind in this population. This is further emphasised when we consider that 29 (7.25%) of the eligible subjects who were not economically rehabilitated were pursuing their education or engaged in economically productive activities prior to our programme. Programmes such as the current one are required to optimally utilise this potential support and provide better services to the incurably blind. The utility of the training provided may also be gauged from the fact that only three (0.75%) persons discontinued their training.

Although gender was not significantly associated with accepting rehabilitation, we had a small proportion of female subjects (n=10) who refused rehabilitative services citing as a reason the lack of a female health worker to assist them. This may be reflective of the socio-cultural barriers and reduced utilisation of eye care services among females in this population. It may be related to difficulties we had in retaining female social workers who were more likely to drop out of the programme citing the inconvenience of travelling to villages outside their own.

Population demographics are changing towards aging in India; this demographic shift is expected to cause a rise in prevalence of degenerative eye diseases in the coming decades. If the economic burden due to this potential blindness in India is to be reduced, the focus should be on improving the quality of existing services and on providing rehabilitative services for the blind. This will require an adequate number of vision rehabilitation professionals to support ophthalmolo-gists. If we assume that one vision rehabilitation professional in India can implement a programme for a population of 200,000 persons, India requires nearly 5000 vision rehabilitation professionals in the country for its current over one billion population, or one vision rehabilitation professional for every two ophthalmologists. This is assuming that each such professional will be able to train and supervise social workers to work under their guidance.

A programme like the one reported here may be replicable across other rural populations in India and other developing countries. Ideally it should form part of the comprehensive services offered by any ophthalmic hospital. Such programmes do not limit themselves to rehabilitating the blind; they also help in creating awareness of available services to the community. International agencies like Sight Savers International and CBM International already have a focus on promoting CBR projects as a way of moving towards comprehensive eye care.

Our ability to generalise results from this study to the general population is limited by the non-random nature of our sample- the study area was a convenience sample rather than a true random sample. The lack of visual field testing at the community level screening has probably resulted in an underestimation of the prevalence of incurable blindness. The project was primarily designed as a service delivery project-details on variables including family income, marital status, family support, and education levels of other family members were not part of the data collection process, limiting our ability to model factors predicting acceptance of rehabilitative services.

There is a potential to use data from CBR programmes using a standardised format to obtain nationwide data as opposed to the more expensive and logistically difficult national or regional surveys currently conducted to obtain such data. Such programmes can also serve as a database to identify epidemiological trends of ophthalmic diseases, especially those diseases with a relatively lower prevalence, in India. This requires all organisations offering CBR programmes to agree upon a standardised data collection format, to coordinate their activities and agree to share data, and for ophthalmic hospitals to include CBR as part of the comprehensive ophthal-mology services. There is also potential to expand the scope of current CBR programmes to include primary eye care and to develop a primary eye care network for India[11].

 
  References Top

1.
Katti SM. Global health situation. Journal of Association of Physicians India 1997;45:141-44.  Back to cited text no. 1
    
2.
Thylefors B, Negrel A.D, Pararajasegaram R, Dadzie KY. Global data on blindness. Bulletin of the World Health Organization 1995;73:115-121.  Back to cited text no. 2
    
3.
Mohan M. Survey of blindness-India (1986-1989), summary results. Programmeme for the Control of Blindness, Ministry of Health and Family Welfare, Government of India, New Delhi, 1992.  Back to cited text no. 3
    
4.
Shamanna BR, Dandona L, Rao GN. Economic Burden of Blindness in India. Indian J Ophthalmol 1998;46:169-72.  Back to cited text no. 4
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5.
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. 5
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6.
Jose R, Bachani D. World Bank assisted cataract blindness control project. Indian J Ophthalmol 1995;43:35-43.  Back to cited text no. 6
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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. 7
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Dandona L, Dandona R, Naduvilath TJ, McCarty CA, Mandal P, Srinivas M, et al. Population-based assessment of the outcomes of cataract surgery in an urban population in southern India. Am J Ophthalmol 1999;127:650-58.  Back to cited text no. 8
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Murthy GVS, Ellwein LB, Gupta S, Tanikachalam K, Ray M, Dada VK. A population-based eye survey of older adults in a rural district of Rajasthan: II. Outcomes of cataract surgery. Ophthalmology 2001;108:686-92.  Back to cited text no. 9
    
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Anand R, Gupta A, Ram J, Singh U, Kumar R. Visual outcome following cataract surgery in rural Punjab. Indian J Ophthalmol 2000;108:686-92.  Back to cited text no. 10
    
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Hugo G. Over to the next century: continuities and discontinuities. United Nations Publications. Asian Population Studies Series 141.1996; Chapter 8.  Back to cited text no. 11
    


    Figures

  [Figure - 1]
 
 
    Tables

  [Table - 1], [Table - 2], [Table - 3]


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