COMMUNITY EYE CARE
Year : 2004 | Volume
: 52 | Issue : 2 | Page : 163--7
Perceptions of Eye Diseases and Eye Care Needs of Children among Parents in Rural South India: The Kariapatti Pediatric Eye Evaluation Project (KEEP)
Praveen K Nirmalan, S Sheeladevi, V Tamilselvi, Arockia C Victor, P Vijayalakshmi, L Rahmathullah
Department of Aravind Medical Research Founation, Aravind Eye Care System, Madurai, India
Praveen K Nirmalan
Department of Aravind Medical Research Founation, Aravind Eye Care System, Madurai
We conducted 24 focus group discussions for parents and grandparents as part of a population-based survey of ocular morbidity to determine awareness and perceptions of eye diseases in children among parents and guardians of children in a rural south Indian population. Focus group discussions were conducted separately for mothers, fathers and grandparents. They were audiotaped and subsequently transcribed to the local language and English. Content analysis of the focus group discussions was done to identify key concepts, and this yielded five broad areas of interest relating to awareness and attitudes towards: 1) eye problems in children, 2) specific eye diseases in children, 3) vision problems in children, 4) existing health practices, and 5) utilization of services. Vision impairment did not figure in the top ten eye problems cited for children. There was a predominant belief that children below 4 years should not wear spectacles. Strabismus was considered as untreatable and was seen as a sign of good luck. Differing advice provided by the medical community for the same condition was an issue. The discussions also brought out that eye doctors were approached last for eye care, after traditional healers and general physicians. The discussions raise several issues of relevance that eye care programs need to address for better community involvement with programs. This will require a far greater focus than the current curative focus adopted by most programs.
|How to cite this article:|
Nirmalan PK, Sheeladevi S, Tamilselvi V, Victor AC, Vijayalakshmi P, Rahmathullah L. Perceptions of Eye Diseases and Eye Care Needs of Children among Parents in Rural South India: The Kariapatti Pediatric Eye Evaluation Project (KEEP).Indian J Ophthalmol 2004;52:163-7
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Nirmalan PK, Sheeladevi S, Tamilselvi V, Victor AC, Vijayalakshmi P, Rahmathullah L. Perceptions of Eye Diseases and Eye Care Needs of Children among Parents in Rural South India: The Kariapatti Pediatric Eye Evaluation Project (KEEP). Indian J Ophthalmol [serial online] 2004 [cited 2020 Jun 5 ];52:163-7
Available from: http://www.ijo.in/text.asp?2004/52/2/163/14600
Paediatric ophthalmology is not yet well established as a separate subspecialty in India in most eye care programs although there are an estimated 200,000 blind children in India. ,, Separate services targeting children are not often offered by ophthalmologists handling "adult" cases and paediatric eye problems. Training to address ocular problems relating to children is not always a part of every residency program and few institutions offer post-residency training programs in paediatric ophthalmology. Although studies have reported 16.3% to 37% of preventable or avoidable blindness in children in India, ,,, the lack of adequate number of ophthalmologists trained for paediatric ophthalmology and the lack of eye care delivery models targeting children raise challenges for Indian eye care programs. Current models for paediatric eye care in India are heavily tilted towards tertiary care and school screening programs. Tertiary-care models rely on an increased awareness among parents or other caretakers of children to recognise ocular abnormalities and bring children in for eye care. Besides the obvious limitation of missing out on children who do not attend schools when we limit screening programs to children attending schools, such screening programs are dependent on parents or caretakers of children identified with abnormalities bringing them to tertiary care centers for further care. The current structure for delivery of eye care services to children is thus dependent on the awareness of eye care problems of children among caregivers.
The Kariapatti Paediatric Eye Evaluation Project (KPEEP) was designed to determine appropriate service delivery models for eye care services targeting rural children in south India based on estimates of disease prevalence, awareness and attitudes of caretakers, and existing barriers to service utilisation. This manuscript reports on the awareness among caretakers relating to eye problems among children. The primary purpose of this study was to identify a range of potential issues relating to parental awareness and perceptions of eye diseases affecting children. This would help formulate better strategies for eye care services for children, and provide a basis for further quantitative and qualitative research in this area.
Materials and Methods
We conducted the study in the Kariapatti block of Virudhanagar district, Tamil Nadu state, southern India. The block has a population of approximately 95,000 persons of all ages residing in 144 hamlets that make up 36 Panchayats (the local village administrative unit; multiple hamlets make a village). The nearest paediatric ophthalmology tertiary care center is situated 45 kilometers away in the neighbouring district of Madurai. No ophthalmologists practice within the block. For the project, we divided Kariapatti into 6 sectors, each comprising a population of approximately 15,000 persons. The separation into 6 sectors was based on geographical proximity between villages and not necessarily on population size. We randomly chose 74 hamlets with a total estimated population of 35,000 including 10,000-12,000 children, from these 6 sectors for evaluating ocular morbidity among children.
Each of the selected 74 hamlets was mapped by trained community workers who additionally collected social and demographic information from each household after enumeration. After completing the of community mapping, we chose 24 hamlets through systematic random sampling for focus group discussions (FGD). The population distribution of different castes within these 24 hamlets was used to further randomise each of these 24 hamlets to FGD by caste. Based on the proportional representation of different castes in the population, we conducted 3 FGD for forward castes, 12 FGD for members of the backward castes, and 9 for members of scheduled castes.
Focus group discussions were held separately for mothers, fathers and grandparents of children in each caste group (upper, backward and scheduled castes). Each FGD was held in the selected villages after ensuring adequate privacy for participants. To eliminate any bias during selection of participants, we utilised social workers of other ongoing projects in these villages to identify participants for the focus group discussion from the enumeration list prepared during community mapping through a systematic random sampling. The social workers requested participation of identified villagers in the focus group discussions and obtained informed consent before the discussions.
Each focus group discussion was audio taped for better clarity and for transcription at a later date. Broad guidelines regarding concepts to be explored were available with the moderators of the discussions for reference. However, participants were encouraged to explore any issues related to eye care for children. We used a matrix ranking in the focus group discussions to elicit types of eye care problems in children, vision development in children, attitudes and practices relating to eye care in children, and factors affecting utilisation of services. Each audio taped discussion was initially transcribed in the local language and further transcribed to English by two of the authors (VT and ACLV) who were comfortable with both languages. Each discussion was independently verified for accuracy of content from both audiotapes as well as transcripts by two of the investigators (PKN, SS). The transcripts of the focus group discussions were reviewed and analysed for content and key concepts. Coding classifications were created by PKN and SS who coded the focus group discussions. Statements representing unique areas even if mentioned only by a few were also presented.
There were 16,551 persons residing in the 24 hamlets chosen for the focus group discussions. A majority of the households were of the backward caste (n=5502, 65%), and nearly a third were from scheduled castes. Nearly a third of the population were aged 15 years or younger (n=4869, 29.4%), 7914 persons (47.8%) were aged 16 to 50 years, and 3768 persons (22.8%) were older than 50 years. The population was made of an almost equal number of males (n=8365, 50.5%) and females (n=8186, 49.5%). Nearly two thirds of the population were literate (n=10,630, 64.2%). The majority of the population aged older than 15 years were unskilled laborers (n=7563, 64.7%). The median reported monthly income for a family was Rs. 500 and 8041 (95%) of families had a reported monthly income of Rs.2000 or less. Prior history of ocular complaints was elicited for 585 (3.5%) persons and 347 (2.1%) persons were using spectacles.
High participation rates (n=182, 97%) were obtained for the focus group discussions. One hundred and eighty two people participated in the 24 focus group discussions. Each focus group discussion had a minimum of 4 and maximum of 8 persons. The mean age of participants was 43.9 years (SD 15.8 years, range 20 to 85 years). The mean years of education was 3.5 years (SD 3.7 years); 78 (42.8%) participants were illiterate. Transcripts of the discussions yielded statements that were not mutually exclusive and could be classified in multiple ways. We further classified these statements into 5 broad areas relating to knowledge, awareness and practices relating to eye care for children [Table 1] including awareness of eye problems in children and, awareness and attitudes towards certain specific eye diseases and vision problems in children [Table 2], existing health practices and utilisation of eye care facilities [Table 3]. A content analysis of the focus group discussions performed separately for mothers, fathers and grandparents of children did not reveal any significant differences in responses. The 5 most common eye problems/diseases identified by participants were (1) hordeolum externum, (2) pain in the eyes, (3) watering, (4) redness and (5) discharge from the eyes. Interestingly, vision impairment did not figure in the top 10 problems cited by participants. At the end of each focus group discussion, participants were asked to cite expectations regarding services provided by eye care programmes. The five most commonly cited expecta-tions by participants included (1) organisation of more community outreach programmes, (2) provision for free treatment of eye disorders, (3) establishment of eye care services locally, (4) education on eye health and nutrition at the community level, and (5) distribution of medications for eye problems at the primary level.
Developing eye care programs targeting children is different from programs targeting adults, as the primary decision maker in the case of children with eye problems is often not the subject with the problem. Additionally, the decision maker is often not aware of the problem, as the child is unable to express their discomfort. Knowledge regarding perceptions and awareness of eye diseases among parents is important in this context.
Programs initiated by the World Health Organization and the International Agency for Prevention of Blindness are in place in Europe,  and more recently facilities are available to screen for eye disorders in children in developing countries.
Data generated from focus group discussions primarily aim to provide psychosocial insights into the population subgroups under study and do not necessarily translate to being representative of the entire population. Additionally, data generation in focus group discussions is dependent on the channels of communication between participants and the ability of the facilitator to moderate the discussion. A major strength of focus group discussions, however, is the open-ended nature of discussions that allow participants to explore issues of relevance to them, and the freedom for participants to articulate responses in a language they are comfortable with. Audiotaping the discussions also ensures that facilitators do not spend valuable time transcribing data during actual interactions with participants.
Content analysis of the focus group discussions did not show difference in responses between mothers, fathers or grandparents, or between different caste groups. The lack of major differences between grandparents and parents is probably reflective of knowledge and practices being transmitted down and followed by the next generation.
Our study brings out several challenges that eye care programmes need to consider addressing for better programme outcomes. Data generated on specific diseases raised several important misconceptions harbored in this population. The most important was that strabismus was not treatable, and that strabismus does not lead to loss of vision. Strabismus was also considered a sign of good luck. The discussions also brought out the lack of uniform treatment advice among doctors.- (respondents pointed out that treatment for strabismus or cataracts depended on the doctor consulted)
It is a matter of concern for eye care programs that respondents did not consider vision impairment as among the top 10 eye problems among children. Of additional concern is the fact that majority of them felt that children below 4 years should not wear spectacles. Most respondents did not feel that vision should be checked periodically for children and that vision for children need be checked only if the caretakers felt there was a problem with the child or if the child actually made a complaint. This reinforces the necessity for the caretaker to be aware of eye diseases in children and the manifestations of common eye diseases so that they could make informed decisions on bringing their wards in for treatment.
A focus entirely on curative services without an understanding or an attempt to address issues similar to the ones raised in our focus group discussions may possibly explain the persistent low uptake of services in such populations. Our discussions also suggest that segments of communities still look up on the traditional healers for primary level of health care delivery. Co-opting such traditional healers in the primary care process may facilitate community involvement. Eye care programs need to be aware and sensitive to issues relating to beliefs, cultures and traditions of communities they serve for optimal success and community involvement with the programs.
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