Original Article Change‑Readiness of the Blind: A Hospital Based Study in a Coastal Town of South India Ramya Shetty, Uma D. Kulkarni1
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ABSTRACT Purpose: Blindness is a devastating condition with psychosocial and economic effects. The shortcomings result in a burden to the blind person, the family and society. Rehabilitation of the blind can transform their lives. The aim of this study was to assess the “change‑readiness” of the blind to undergo a “change‑management.” Materials and Methods: The study was a semi‑structured pre‑tested questionnaire‑based study of 50 blind subjects in a medical college hospital. The blind participants were assessed for depression using the Beck Depression Inventory II, for the perceived effect of blindness on family, social life and occupation. The participants were counseled to undergo psychiatric management, vocational training, use blind aids and learn Braille. The willingness of the participants with reasons was assessed using a verbal analogue scale. Pearson Chi‑square test, ANOVA and the t‑test were used for statistical analysis. Results: Over two‑thirds of the subjects were depressed. Family life, social life and occupation were perceived to be affected by 44%, 66% and 74%, respectively. Change‑readiness scores were low for low vision and blind aids, vocational training, psychiatric management, change of job and learning Braille. The low score was due to the associated taboo, dependence, lack of skills, embarrassment, etc., The most valuable feature was the family cohesiveness. Conclusion: The results suggest that there is a need to modify health policy to include blind rehabilitation, to improve visibility of blind rehabilitation centers, to include family members and co‑professionals while managing the blind so that we treat the “blind person” and not a “pair of blind eyes.”
Website: www.meajo.org DOI: 10.4103/0974-9233.129768 Quick Response Code:
Key words: Blindness, Change‑Management, Change‑Readiness, Depression, Rehabilitation
INTRODUCTION
B
lindness is a devastating condition and its magnitude in India is vast (15 million). 1 The consequences of blindness range from depression,2‑4 loss of jobs,5 jeopardized relationships 6,7 to meager economic conditions. 8 Faced by challenges, people with blindness become a burden to themselves, the family and society. At present, the National Program for Control of Blindness (NPCB) policies of the government of India9 focus on prevention and cure of blindness, but not rehabilitation. It is reported that without adequate rehabilitation measures, many blind persons
resort to begging.8 The same is true in India, but there is no literature quoting statistics. On the other hand, there are blind persons who have been “achievers” in the fields of art, music, sports, politics, etc., Appropriate rehabilitation can transform a blind person into a “blind achiever.” The authors adopt the term “change‑management”10 for the comprehensive blind rehabilitation strategy, which includes solutions to psychiatric, vocational, mobility and visual problems faced by the blind. The aim of the study was to assess the willingness or “change‑readiness” of the blind to “change‑management” strategy.
Departments of Ophthalmology, and 1Ophthalmology, Yenepoya Medical College, Yenepoya University, Mangalore, Karnataka, India Corresponding Author: Dr. Uma D. Kulkarni, Lakshmi Keshava, 4th Cross, Shivabagh, Mangalore ‑ 575 002, Karnataka, India. E‑mail: [email protected], [email protected]
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Shetty and Kulkarni: Are we Turning a Blind Eye Toward the Blind?
The objectives were to assess: • Depression and the “perceived” effect of blindness on day‑to‑day aspects of life • “Change‑readiness” to the “change‑management” protocol encompassing psychiatric management, vocational and blind rehabilitation measures • Factors affecting “change‑readiness”.
MATERIALS AND METHODS The study was a cross‑sectional semi‑structured pre‑tested questionnaire‑based study of the blind subjects conducted in the Yenepoya Medical College Hospital, Mangalore from May to July, 2011. A convenience sample of 50 adult participants with blindness as defined by Indian modification of World Health Organization (WHO) classification11 was included. The blind subjects were selected by purposive sampling from the patients attending the out‑patient department. Cases of blindness over 18 years with vision less than 3/60 in the better eye were included. Unilateral blindness, visual impairment,11 curable blindness (including cataract blindness) and children with blindness were excluded. Methodology
The consenting blind participants were enrolled for the study after a detailed clinical history and ophthalmic evaluation including visual acuity assessment, anterior and posterior segment evaluation using slit‑lamp accessories and ultrasound imaging when required to diagnose blindness and its cause. • Assessment of the effect of blindness: a. Assessment of depression was performed with the Beck Depression Inventory II (BDI‑II)12 administered verbally by the investigator. The chosen response was marked and scored for depression. Depression was classified as no/minimal (0‑13), mild (14‑19), moderate (20‑28) and severe (29‑63) b. The “perceived” effect of blindness on the professional and socio‑economic aspects was assessed using a verbally administered semi‑structured questionnaire c. Functional vision was assessed by the ability of the blind to recognize faces and objects and move about avoiding obstacles. Such participants were considered suitable for the optical low vision aid like magnifiers. Participants without physical disability like hemiparesis, amputated diabetic limbs were considered as suitable for blind aids like the walking cane. Since the hospital caters primarily to the rural and socio‑economically underprivileged population, the choice of expensive computer aided low vision devices is not routinely practical. Hence, the study included “magnifiers” as a form of low vision device, which could be used for day‑to‑day activities only.
• “Change‑management” strategy was suggested: The participants were counseled to undergo/use: a. Psycho‑pharmacotherapy and counseling b. Vocational training and change of job c. Blind aids like white cane and low vision devices such as magnifiers. • “Change‑readiness” was assessed using the verbal analogue scale for the change‑management strategy suggested to them: a. The subjects were asked to imagine a scale with markings 0‑10, where “zero” indicated “Not at all willing for change” and “10” indicated “completely willing for change or already changing.” The respondents were asked to quote a number from 0 to 10 which correspond to their level of agreement for change. This number was considered as the “change‑readiness score” for that attribute. b. The subjects were asked to enumerate reasons for choosing that particular score for each attribute. Statistical analysis
Analysis was performed using percentages and proportions. Significance of differences in responses between different comparable groups was performed using Pearson Chi‑square test, ANOVA and the t‑test. P < 0.05 was considered to be statistically significant. Ethics
The study was conducted after obtaining clearance from and in accordance with the regulations of the Institutional Ethics Committee. An informed written consent was administered to the subject after verbally discussing the same in the presence of a bystander. The questionnaire was administered with empathy and sensitivity for every blind participant.
RESULTS The 50 blind participants included 29 males and 21 females (M: F 1.38:1). The mean age was 56.64 years (range: 20‑103; peak: 7th‑8th decade). There was no gender or age‑wise statistically significant difference in the proportion of blind cases (Pearson Chi‑square = 0.080, P = 0.961). The distribution is plotted in Figure 1. Only 16% had completed higher education and 46% had schooling up to class 10th; nearly, 38% were illiterate [Figure 2]. Blindness was statistically significantly greater in the lower educational groups (Chi‑square = 7.149, P = 0.0280). About 54% were unemployed and one, a student. The proportion of blindness in the various groups of employment was statistically comparable (Chi‑square = 9.351, P = 0.096).
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The etiology of blindness included retinal pathology (38%), glaucoma (20%), corneal opacity and optic atrophy (14% each), post‑operative complications (12%) and congenital anomalies (2%). Sixteen (32%) perceived their eyes to be disfigured and 36% complained of ocular pain. The average duration of blindness was 7.75 years with no statistically significant difference between genders (Chi‑square = 0.643, P = 0.7251). Most had simultaneous bilateral blindness, whereas 32% had previously experienced unilateral blindness for 2‑48 years (mean = 21.2 years). The various aspects of life perceived to be affected by the blind are presented in Figure 3. The majority felt that their occupation (74%) and income (66%) were affected due to blindness. This perception was statistically significantly greater in males (Chi‑square = 6.515, P = 0.038). Family relations were “perceived” to be affected by 44% with no statistically significant gender differences (Chi‑square = 2.043, P = 0.360). Social life was perceived to be affected in 66% with males perceiving it significantly more than females (Chi‑square = 8.499, P = 0.014). The average BDI score was 17.22 (male: female 16.51:18.19). The majority had mild and moderate depression [Figure 4]. 160
Proportion of depression was highest in 7 th decade and severity was greatest in the 4‑5th decades. These differences were statistically comparable in different age groups and gender (Chi‑square test: P =0.703; Chi‑square = 0.722, P = 0.868). The severity of depression was not related to the duration of blindness (Kruskal‑Wallis test = 3.907; P = 0.272). The change‑readiness scores are shown in Figure 5. There was no statistically significant gender difference in change‑readiness for psychiatric counseling and pharmacotherapy. (Levene’s test for equality variance, t = 0.401, P = 0.690 for psychiatric counseling, t = 1.13, P = 0.264 for pharmacotherapy). Only 6% had already taken psychiatric counseling and none was receiving pharmacotherapy. There was no statistically significant difference in the change‑readiness scores in different severities of depression (ANOVA; F = 0.815, P = 0.492). The average change‑readiness score for “change of the job” was statistically significantly greater in males (Levene’s test for equality of variance t = 2.723; P = 0.009). There was no significant gender difference in the scores for vocational training (Levene’s test for equality of variance t = 2.001; P = 0.051), for blind aids, learning Braille and for low vision aids (Levene’s t‑test for equality of variance t = 1.867;
Middle East African Journal of Ophthalmology, Volume 21, Number 2, April - June 2014
Shetty and Kulkarni: Are we Turning a Blind Eye Toward the Blind?
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P = 0.068 for blind aids; t = 1.222; P = 0.261 for learning Braille: t = 0.272; P = 0.790 for low vision aids). Only 48% were suitable for using magnifiers for day‑to‑day activities. Only 6% had visited a low vision center and used a low vision aid, which included spectacle magnifiers by two and hand held magnifier by one. A considerable proportion of the blind subjects showed an absolute lack of change‑readiness for undergoing psychiatric, vocational and blind rehabilitation [Figure 6]. The reasons quoted for high and low score are listed in Table 1.
DISCUSSION Blindness is a major public health problem influencing various aspects of the life of the blind. Rehabilitation of the blind does not feature in major health policies in India. Currently, there is no published data on the proportion of the blind undergoing rehabilitation or regarding their attitude to “change” in order to improve their quality‑of‑life. Our study assessed the impact of blindness and the change‑readiness of the blind to undergo a comprehensive strategy comprising psychiatric management, blind‑rehabilitation and vocational training, which the authors termed “change‑management.”
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Figure 6: 0 and 10 “change‑readiness” scores
may be attributed to for such variation. This may also reflect the social, cultural and religious barriers for the females for seeking hospital services.
Table 1: Reasons quoted for low and high “change‑readiness” scores Reasons for low change‑ readiness For psychiatric management Need to depend for consultation Need for assistance Need for vehicle Not aware of depressive symptoms Taboo associated Financial burden Poor accessibility Not interested Poor acceptability For change of job and vocational training Not acceptable Presence of tremors due to old age Don’t have artistic skill Learning is difficult in old age Not interested in art For blind aids, low vision aids and learning Braille Feel embarrassed using white cane Restricted indoors and hence don’t need white cane Braille is new and may be difficult to learn Learning is difficult in old age
Reasons for high change‑ readiness
The mean age in the current study was less than previous studies15,16 and this is likely due to the exclusion of cataract, the most common cause of blindness in the aged. The higher proportion of blindness was among the groups with lower educational and was consistent with the WHO data.9 The causes of blindness were identical to the NPCB9 data when cataract was excluded.
Want to get relieved of depression To improve their relationship with family members To regain confidence To live a better life Pharmacotherapy is convenient than counseling
Impact of blindness
Depression was present in 68% of subjects in our study, comparable to other studies which have reported between 26.4% and 90%.2‑4,8,17 The average BDI score was higher than in other studies2 indicating that depression was more severe. The BDI scores were identical in both genders as also observed in a study by Hayman.18 Depression was more common in the older individuals, although its severity was greater in the younger age groups. Visual impairment in working adults is known to lower levels of mental health.19 The presence and severity of depression did not correlate with the duration of blindness. “Blindness reaction” has been likened to “grief,” in which patients “mourn” the loss of a sighted self.20 An initial denial followed by gradual acceptance may account for depression in short duration of blindness whereas the feeling of loss, isolation, dependence, loneliness and incompetence may account for depression in long‑term blindness. In our study, factors such as financial stress, loss of job, strained social and family life may have aggravated depression. In the current study, approximately a third of the participants perceived their eyes as “deformed” and had ocular pain. These factors may have further intensified the depression.
To improve financial condition of family To earn respectfully To keep occupied To overcome the problems posed by the present job due to poor vision To become independent financially Low vision gave hopes of regaining lost vision White cane will enable them to walk and cross roads without assistance White cane will ensure safety while walking at night and when there is no assistance White cane will protect from street dogs
Braille learning may be sophisticated and expensive
Males comprised a greater proportion of the blind in our study in contrast to other data.13,14 The hospital‑based study design 162
Despite the high proportion of depression, the change‑readiness scores were low and only one‑third expressed change‑readiness
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for psychiatric management. Reasons quoted for low awareness suggested poor motivation, dependence on family and the taboo associated with psychiatric problems. Vision is a major determinant of virtually any profession. Traditionally, males are the bread earners for the family; commensurate occupation was perceived to be affected significantly greater in males. Most of the blind were unemployed, the findings being similar to a report which stated that 25% retired or changed to part‑time jobs after the onset of visual impairment.5 A Nigerian report states that lack of education and inadequate rehabilitation services turned the blind into street beggars.8 None of our study participants had resorted to begging probably due to the support offered by the family, whereas beggary is indeed a form of profession adopted by many beggars in India, as seen in temples, railways and public areas, although no statistical data is available. Factors forcing the blind to resort to beggary may have a contribution from the socio‑economic status and the rehabilitation measures provided to them. Despite the finding that more than half of the blind were unemployed, change‑readiness for vocational rehabilitation and change of the job was low. Males were more change‑ready for the same likely due to the increasing financial constraints. Furthermore, learning handicrafts and art needs some level of motor skills and patience, which the blind participants perceived to be lacking in themselves. Blindness has a negative impact on personal relationships. Separation from a committed relationship was seen in 50% of visually impaired.6 In our study, 22% felt that family relations were strained although none was separated from a committed relationship. This possibly reflects a strong tendency for family bonding. However, stress in the family members cannot be ruled out as reported in a study that 35.4% of caregivers of the blind were identified to be at risk for depression.7 Two‑thirds indicated that social life was affected. The stigma and limitations associated with blindness may result in social neglect of the blind. This is identical to the findings from other studies that 53% of the visually impaired participants experienced restrictions in socializing21 and 39.5% stopped participating in leisure activities.5 Willingness for low vision aids was better than for other rehabilitation measures. This is understandable because low vision aid is the only rehabilitation measure, which offers a chance of regaining vision. Horowitz et al.22 proposed that optical devices optimize residual vision and thus allow for greater continuity in the way tasks are accomplished, whereas blind aids involve learning new methods to compensate for the lost functions and thus is not as desirable either functionally or psychologically. Similarly, in our study, willingness to use
blind aids such as a white cane was low and met with barriers including embarrassment and stigma. Willingness to learn Braille was the least as many were unaware of Braille and they found it sophisticated and difficult. The awareness about blind rehabilitation in Canada was 71% and 81% had participated in low vision rehabilitation.23 In the United States, the proportion of employment among the blind is as high as 90% in Braille literates and is as low as 33% in the Braille illiterate.24 The inclination of the blind for rehabilitation in this study is poor as is expected in a developing country where rehabilitation centers are few, education level low and socio‑cultural barriers rampant despite the high magnitude of blindness. In stark contrast to the Nigerian study,8 where many blind ended up as street beggars, there have been “blind achievers” in various fields including sports.25 The blind population should follow examples of Indian blind achievers like blind chess players trained by the All India chess federation for the blind,26 blind Indian musicians like Ravindra Jain and the black concert group, social workers and many others. The success of the blind achievers indicates that an overall development of the blind is possible although, only through a planned strategy. The reasons quoted for high change‑readiness scores indicated good motivation and enthusiasm to improve their living condition and the reasons for poor change‑readiness indicate barriers to effective blind rehabilitation. These factors can be used as a “guide” in planning and implementing blind rehabilitation programs. The most valuable factor noted in our study was the strong family support and bonding. This attribute should act as a scaffold on which the blind persons can take steps for rehabilitation.
CONCLUSION Blindness not only affects visual perception, but is also likely to cause depression, affect family and social life, occupation and mobility. The NPCB in India should focus on empowering the blind by extending blind rehabilitation services to encompass all the blind in India. Centers offering blind rehabilitation facilities need increased visibility, funding and promotion so that their facilities may be extended to all the individuals with irreversible blindness. There is a need to identify residual functional vision in every blind person and help transform this into their strength using appropriate low vision devices. Hospitals and ophthalmologists need to treat the “blind person” and not the “blind eye” through a multidisciplinary approach. Coordination with other centers namely, low vision centers, vocational training centers, motility centers, psychiatry department, psychology department, medico‑social workers, etc., should become a routine practice in the management of the blind. A general awareness of blindness,
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its impact on the person, family and society and the need for rehabilitation should be imparted in the general population. Social issues such as taboos should be addressed. The proactive involvement of the family members in the rehabilitation of the blind should be emphasized and internalized so that it becomes effortless to make a blind individual an independent motivated achiever. Change‑management is what the blind needs and change‑readiness is poor. Are we turning a blind eye toward the blind? The onus of responsibility rests on the shoulders of the health policy makers, rehabilitation centers, hospitals.
ACKNOWLEDGMENTS The authors acknowledge the support of ICMR STS program for the encouragement and financial support and also thank to Ms. Neevan, Yenepoya University for helping with the statistical analysis.
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World Health Organization. Available from: http://www.who. int/blindness/en/index.html. [Last accessed on 2011 Sep 10]. 2. Koenes SG, Karshmer JF. Depression: A comparison study between blind and sighted adolescents. Issues Ment Health Nurs 2000;21:269‑79. 3. Banerjee A, Kumar S, Kulhara P, Gupta A. Prevalence of depression and its effect on disability in patients with age‑related macular degeneration. Indian J Ophthalmol 2008;56:469‑74. 4. Fitzgerald RG. Reactions to blindness. An exploratory study of adults with recent loss of sight. Arch Gen Psychiatry 1970;22:370‑9. 5. Rasmussen ML. The eye amputated‑consequences of eye amputation with emphasis on clinical aspects, phantom eye syndrome and quality of life. Acta Ophthalmol 2010;88 Thesis 2:1‑26. 6. Bernbaum M, Albert SG, Duckro PN, Merkel W. Personal and family stress in individuals with diabetes and vision loss. J Clin Psychol 1993;49:670‑7. 7. Bambara JK, Owsley C, Wadley V, Martin R, Porter C, Dreer LE. Family caregiver social problem‑solving abilities and adjustment to caring for a relative with vision loss. Invest Ophthalmol Vis Sci 2009;50:1585‑92. 8. Ademola‑Popoola DS, Tunde‑Ayinmode MF, Akande TM. Psychosocial characteristics of totally blind people in a Nigerian city. Middle East Afr J Ophthalmol 2010;17:335‑42. 9. National Programme for Control of Blindness. Ministry of Health and Family Welgare, India. Available from: http://npcb.nic. in/. [Last accessed on 2013 Jul 9]. 10. KLR‑Change‑management. Available from: http://www.klr.com/
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articles/Articles_ChangeManagement _change_readiness_ assessement.pdf. [Last accessed on 2013 Jul 9]. 11. Sihota R, Tandon R. Parsons’ Diseases of the Eye. 19th ed. New Delhi: Elsevier Publications; 2003. 12. Richter P, Werner J, Heerlein A, Kraus A, Sauer H. On the validity of the beck depression inventory. A review. Psychopathology 1998;31:160‑8. 13. Available from: http://whqlibdoc.who.int/gender/2002/a85574. pdf. [Last accessed on 2013 Jul 9]. 14. Abou‑Gareeb I, Lewallen S, Bassett K, Courtright P. Gender and blindness: A meta‑analysis of population‑based prevalence surveys. Ophthalmic Epidemiol 2001;8:39‑56. 15. A v a i l a b l e f r o m : h t t p : / / u p d a t e o x . c o m / i n d i a / state‑wise‑sex‑ratio‑in‑india‑in‑2011‑compared‑with‑ 2001‑census/. [Last accessed on 2013 Jul 9]. 16. Dineen B, Foster A, Faal H. A proposed rapid methodology to assess the prevalence and causes of blindness and visual impairment. Ophthalmic Epidemiol 2006;13:31‑4. 17. Rees G, Tee HW, Marella M, Fenwick E, Dirani M, Lamoureux EL. Vision‑specific distress and depressive symptoms in people with vision impairment. Invest Ophthalmol Vis Sci 2010;51:2891‑6. 18. Hayman KJ, Kerse NM, La Grow SJ, Wouldes T, Robertson MC, Campbell AJ. Depression in older people: Visual impairment and subjective ratings of health. Optom Vis Sci 2007;84:1024‑30. 19. Nyman SR, Gosney MA, Victor CR. Psychosocial impact of visual impairment in working‑age adults. Br J Ophthalmol 2010;94:1427‑31. 20. Shulz PJ. Reaction to the loss of sight. In: Pearlman J, Adams G, Sloan S, editors. Psychiatric Problems in Ophthalmology. Springfield, IL: Charles C Thomas; 1977. p. 60‑73. 21. Alma MA, van der Mei SF, Melis‑Dankers BJ, van Tilburg TG, Groothoff JW, Suurmeijer TP. Participation of the elderly after vision loss. Disabil Rehabil 2011;33:63‑72. 22. Horowitz A, Brennan M, Reinhardt JP, Macmillan T. The impact of assistive device use on disability and depression among older adults with age‑related vision impairments. J Gerontol B Psychol Sci Soc Sci 2006;61:S274‑80. 23. Mwilambwe A, Wittich W, Freeman EE. Disparities in awareness and use of low‑vision rehabilitation. Can J Ophthalmol 2009;44:686‑91. 24. Available from: http://www.blindmassageintl.com/ news/3/2010‑8‑17/Braille‑literacy‑statistics.html. [Last accessed on 2011 Sep 10]. 25. Available from: http://www.disabled‑world.com/artman/ publish/famous‑blind.shtml. [Last accessed on 2011 Sep 10]. 26. Available from: http://www.aicfb.in/index.asp. [Last accessed on 2013 Jul 04]. Cite this article as: Shetty R, Kulkarni UD. Change-readiness of the blind: A hospital based study in a coastal town of South India. Middle East Afr J Ophthalmol 2014;21:158-64. Source of Support: ICMR STS program 2011 in the form of stipend to the student for conducting the research , Conflict of Interest: None declared.
Middle East African Journal of Ophthalmology, Volume 21, Number 2, April - June 2014
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Access this article online
ABSTRACT Purpose: Blindness is a devastating condition with psychosocial and economic effects. The shortcomings result in a burden to the blind person, the family and society. Rehabilitation of the blind can transform their lives. The aim of this study was to assess the “change‑readiness” of the blind to undergo a “change‑management.” Materials and Methods: The study was a semi‑structured pre‑tested questionnaire‑based study of 50 blind subjects in a medical college hospital. The blind participants were assessed for depression using the Beck Depression Inventory II, for the perceived effect of blindness on family, social life and occupation. The participants were counseled to undergo psychiatric management, vocational training, use blind aids and learn Braille. The willingness of the participants with reasons was assessed using a verbal analogue scale. Pearson Chi‑square test, ANOVA and the t‑test were used for statistical analysis. Results: Over two‑thirds of the subjects were depressed. Family life, social life and occupation were perceived to be affected by 44%, 66% and 74%, respectively. Change‑readiness scores were low for low vision and blind aids, vocational training, psychiatric management, change of job and learning Braille. The low score was due to the associated taboo, dependence, lack of skills, embarrassment, etc., The most valuable feature was the family cohesiveness. Conclusion: The results suggest that there is a need to modify health policy to include blind rehabilitation, to improve visibility of blind rehabilitation centers, to include family members and co‑professionals while managing the blind so that we treat the “blind person” and not a “pair of blind eyes.”
Website: www.meajo.org DOI: 10.4103/0974-9233.129768 Quick Response Code:
Key words: Blindness, Change‑Management, Change‑Readiness, Depression, Rehabilitation
INTRODUCTION
B
lindness is a devastating condition and its magnitude in India is vast (15 million). 1 The consequences of blindness range from depression,2‑4 loss of jobs,5 jeopardized relationships 6,7 to meager economic conditions. 8 Faced by challenges, people with blindness become a burden to themselves, the family and society. At present, the National Program for Control of Blindness (NPCB) policies of the government of India9 focus on prevention and cure of blindness, but not rehabilitation. It is reported that without adequate rehabilitation measures, many blind persons
resort to begging.8 The same is true in India, but there is no literature quoting statistics. On the other hand, there are blind persons who have been “achievers” in the fields of art, music, sports, politics, etc., Appropriate rehabilitation can transform a blind person into a “blind achiever.” The authors adopt the term “change‑management”10 for the comprehensive blind rehabilitation strategy, which includes solutions to psychiatric, vocational, mobility and visual problems faced by the blind. The aim of the study was to assess the willingness or “change‑readiness” of the blind to “change‑management” strategy.
Departments of Ophthalmology, and 1Ophthalmology, Yenepoya Medical College, Yenepoya University, Mangalore, Karnataka, India Corresponding Author: Dr. Uma D. Kulkarni, Lakshmi Keshava, 4th Cross, Shivabagh, Mangalore ‑ 575 002, Karnataka, India. E‑mail: [email protected], [email protected]
158
Middle East African Journal of Ophthalmology, Volume 21, Number 2, April - June 2014
Shetty and Kulkarni: Are we Turning a Blind Eye Toward the Blind?
The objectives were to assess: • Depression and the “perceived” effect of blindness on day‑to‑day aspects of life • “Change‑readiness” to the “change‑management” protocol encompassing psychiatric management, vocational and blind rehabilitation measures • Factors affecting “change‑readiness”.
MATERIALS AND METHODS The study was a cross‑sectional semi‑structured pre‑tested questionnaire‑based study of the blind subjects conducted in the Yenepoya Medical College Hospital, Mangalore from May to July, 2011. A convenience sample of 50 adult participants with blindness as defined by Indian modification of World Health Organization (WHO) classification11 was included. The blind subjects were selected by purposive sampling from the patients attending the out‑patient department. Cases of blindness over 18 years with vision less than 3/60 in the better eye were included. Unilateral blindness, visual impairment,11 curable blindness (including cataract blindness) and children with blindness were excluded. Methodology
The consenting blind participants were enrolled for the study after a detailed clinical history and ophthalmic evaluation including visual acuity assessment, anterior and posterior segment evaluation using slit‑lamp accessories and ultrasound imaging when required to diagnose blindness and its cause. • Assessment of the effect of blindness: a. Assessment of depression was performed with the Beck Depression Inventory II (BDI‑II)12 administered verbally by the investigator. The chosen response was marked and scored for depression. Depression was classified as no/minimal (0‑13), mild (14‑19), moderate (20‑28) and severe (29‑63) b. The “perceived” effect of blindness on the professional and socio‑economic aspects was assessed using a verbally administered semi‑structured questionnaire c. Functional vision was assessed by the ability of the blind to recognize faces and objects and move about avoiding obstacles. Such participants were considered suitable for the optical low vision aid like magnifiers. Participants without physical disability like hemiparesis, amputated diabetic limbs were considered as suitable for blind aids like the walking cane. Since the hospital caters primarily to the rural and socio‑economically underprivileged population, the choice of expensive computer aided low vision devices is not routinely practical. Hence, the study included “magnifiers” as a form of low vision device, which could be used for day‑to‑day activities only.
• “Change‑management” strategy was suggested: The participants were counseled to undergo/use: a. Psycho‑pharmacotherapy and counseling b. Vocational training and change of job c. Blind aids like white cane and low vision devices such as magnifiers. • “Change‑readiness” was assessed using the verbal analogue scale for the change‑management strategy suggested to them: a. The subjects were asked to imagine a scale with markings 0‑10, where “zero” indicated “Not at all willing for change” and “10” indicated “completely willing for change or already changing.” The respondents were asked to quote a number from 0 to 10 which correspond to their level of agreement for change. This number was considered as the “change‑readiness score” for that attribute. b. The subjects were asked to enumerate reasons for choosing that particular score for each attribute. Statistical analysis
Analysis was performed using percentages and proportions. Significance of differences in responses between different comparable groups was performed using Pearson Chi‑square test, ANOVA and the t‑test. P < 0.05 was considered to be statistically significant. Ethics
The study was conducted after obtaining clearance from and in accordance with the regulations of the Institutional Ethics Committee. An informed written consent was administered to the subject after verbally discussing the same in the presence of a bystander. The questionnaire was administered with empathy and sensitivity for every blind participant.
RESULTS The 50 blind participants included 29 males and 21 females (M: F 1.38:1). The mean age was 56.64 years (range: 20‑103; peak: 7th‑8th decade). There was no gender or age‑wise statistically significant difference in the proportion of blind cases (Pearson Chi‑square = 0.080, P = 0.961). The distribution is plotted in Figure 1. Only 16% had completed higher education and 46% had schooling up to class 10th; nearly, 38% were illiterate [Figure 2]. Blindness was statistically significantly greater in the lower educational groups (Chi‑square = 7.149, P = 0.0280). About 54% were unemployed and one, a student. The proportion of blindness in the various groups of employment was statistically comparable (Chi‑square = 9.351, P = 0.096).
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The etiology of blindness included retinal pathology (38%), glaucoma (20%), corneal opacity and optic atrophy (14% each), post‑operative complications (12%) and congenital anomalies (2%). Sixteen (32%) perceived their eyes to be disfigured and 36% complained of ocular pain. The average duration of blindness was 7.75 years with no statistically significant difference between genders (Chi‑square = 0.643, P = 0.7251). Most had simultaneous bilateral blindness, whereas 32% had previously experienced unilateral blindness for 2‑48 years (mean = 21.2 years). The various aspects of life perceived to be affected by the blind are presented in Figure 3. The majority felt that their occupation (74%) and income (66%) were affected due to blindness. This perception was statistically significantly greater in males (Chi‑square = 6.515, P = 0.038). Family relations were “perceived” to be affected by 44% with no statistically significant gender differences (Chi‑square = 2.043, P = 0.360). Social life was perceived to be affected in 66% with males perceiving it significantly more than females (Chi‑square = 8.499, P = 0.014). The average BDI score was 17.22 (male: female 16.51:18.19). The majority had mild and moderate depression [Figure 4]. 160
Proportion of depression was highest in 7 th decade and severity was greatest in the 4‑5th decades. These differences were statistically comparable in different age groups and gender (Chi‑square test: P =0.703; Chi‑square = 0.722, P = 0.868). The severity of depression was not related to the duration of blindness (Kruskal‑Wallis test = 3.907; P = 0.272). The change‑readiness scores are shown in Figure 5. There was no statistically significant gender difference in change‑readiness for psychiatric counseling and pharmacotherapy. (Levene’s test for equality variance, t = 0.401, P = 0.690 for psychiatric counseling, t = 1.13, P = 0.264 for pharmacotherapy). Only 6% had already taken psychiatric counseling and none was receiving pharmacotherapy. There was no statistically significant difference in the change‑readiness scores in different severities of depression (ANOVA; F = 0.815, P = 0.492). The average change‑readiness score for “change of the job” was statistically significantly greater in males (Levene’s test for equality of variance t = 2.723; P = 0.009). There was no significant gender difference in the scores for vocational training (Levene’s test for equality of variance t = 2.001; P = 0.051), for blind aids, learning Braille and for low vision aids (Levene’s t‑test for equality of variance t = 1.867;
Middle East African Journal of Ophthalmology, Volume 21, Number 2, April - June 2014
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P = 0.068 for blind aids; t = 1.222; P = 0.261 for learning Braille: t = 0.272; P = 0.790 for low vision aids). Only 48% were suitable for using magnifiers for day‑to‑day activities. Only 6% had visited a low vision center and used a low vision aid, which included spectacle magnifiers by two and hand held magnifier by one. A considerable proportion of the blind subjects showed an absolute lack of change‑readiness for undergoing psychiatric, vocational and blind rehabilitation [Figure 6]. The reasons quoted for high and low score are listed in Table 1.
DISCUSSION Blindness is a major public health problem influencing various aspects of the life of the blind. Rehabilitation of the blind does not feature in major health policies in India. Currently, there is no published data on the proportion of the blind undergoing rehabilitation or regarding their attitude to “change” in order to improve their quality‑of‑life. Our study assessed the impact of blindness and the change‑readiness of the blind to undergo a comprehensive strategy comprising psychiatric management, blind‑rehabilitation and vocational training, which the authors termed “change‑management.”
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may be attributed to for such variation. This may also reflect the social, cultural and religious barriers for the females for seeking hospital services.
Table 1: Reasons quoted for low and high “change‑readiness” scores Reasons for low change‑ readiness For psychiatric management Need to depend for consultation Need for assistance Need for vehicle Not aware of depressive symptoms Taboo associated Financial burden Poor accessibility Not interested Poor acceptability For change of job and vocational training Not acceptable Presence of tremors due to old age Don’t have artistic skill Learning is difficult in old age Not interested in art For blind aids, low vision aids and learning Braille Feel embarrassed using white cane Restricted indoors and hence don’t need white cane Braille is new and may be difficult to learn Learning is difficult in old age
Reasons for high change‑ readiness
The mean age in the current study was less than previous studies15,16 and this is likely due to the exclusion of cataract, the most common cause of blindness in the aged. The higher proportion of blindness was among the groups with lower educational and was consistent with the WHO data.9 The causes of blindness were identical to the NPCB9 data when cataract was excluded.
Want to get relieved of depression To improve their relationship with family members To regain confidence To live a better life Pharmacotherapy is convenient than counseling
Impact of blindness
Depression was present in 68% of subjects in our study, comparable to other studies which have reported between 26.4% and 90%.2‑4,8,17 The average BDI score was higher than in other studies2 indicating that depression was more severe. The BDI scores were identical in both genders as also observed in a study by Hayman.18 Depression was more common in the older individuals, although its severity was greater in the younger age groups. Visual impairment in working adults is known to lower levels of mental health.19 The presence and severity of depression did not correlate with the duration of blindness. “Blindness reaction” has been likened to “grief,” in which patients “mourn” the loss of a sighted self.20 An initial denial followed by gradual acceptance may account for depression in short duration of blindness whereas the feeling of loss, isolation, dependence, loneliness and incompetence may account for depression in long‑term blindness. In our study, factors such as financial stress, loss of job, strained social and family life may have aggravated depression. In the current study, approximately a third of the participants perceived their eyes as “deformed” and had ocular pain. These factors may have further intensified the depression.
To improve financial condition of family To earn respectfully To keep occupied To overcome the problems posed by the present job due to poor vision To become independent financially Low vision gave hopes of regaining lost vision White cane will enable them to walk and cross roads without assistance White cane will ensure safety while walking at night and when there is no assistance White cane will protect from street dogs
Braille learning may be sophisticated and expensive
Males comprised a greater proportion of the blind in our study in contrast to other data.13,14 The hospital‑based study design 162
Despite the high proportion of depression, the change‑readiness scores were low and only one‑third expressed change‑readiness
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for psychiatric management. Reasons quoted for low awareness suggested poor motivation, dependence on family and the taboo associated with psychiatric problems. Vision is a major determinant of virtually any profession. Traditionally, males are the bread earners for the family; commensurate occupation was perceived to be affected significantly greater in males. Most of the blind were unemployed, the findings being similar to a report which stated that 25% retired or changed to part‑time jobs after the onset of visual impairment.5 A Nigerian report states that lack of education and inadequate rehabilitation services turned the blind into street beggars.8 None of our study participants had resorted to begging probably due to the support offered by the family, whereas beggary is indeed a form of profession adopted by many beggars in India, as seen in temples, railways and public areas, although no statistical data is available. Factors forcing the blind to resort to beggary may have a contribution from the socio‑economic status and the rehabilitation measures provided to them. Despite the finding that more than half of the blind were unemployed, change‑readiness for vocational rehabilitation and change of the job was low. Males were more change‑ready for the same likely due to the increasing financial constraints. Furthermore, learning handicrafts and art needs some level of motor skills and patience, which the blind participants perceived to be lacking in themselves. Blindness has a negative impact on personal relationships. Separation from a committed relationship was seen in 50% of visually impaired.6 In our study, 22% felt that family relations were strained although none was separated from a committed relationship. This possibly reflects a strong tendency for family bonding. However, stress in the family members cannot be ruled out as reported in a study that 35.4% of caregivers of the blind were identified to be at risk for depression.7 Two‑thirds indicated that social life was affected. The stigma and limitations associated with blindness may result in social neglect of the blind. This is identical to the findings from other studies that 53% of the visually impaired participants experienced restrictions in socializing21 and 39.5% stopped participating in leisure activities.5 Willingness for low vision aids was better than for other rehabilitation measures. This is understandable because low vision aid is the only rehabilitation measure, which offers a chance of regaining vision. Horowitz et al.22 proposed that optical devices optimize residual vision and thus allow for greater continuity in the way tasks are accomplished, whereas blind aids involve learning new methods to compensate for the lost functions and thus is not as desirable either functionally or psychologically. Similarly, in our study, willingness to use
blind aids such as a white cane was low and met with barriers including embarrassment and stigma. Willingness to learn Braille was the least as many were unaware of Braille and they found it sophisticated and difficult. The awareness about blind rehabilitation in Canada was 71% and 81% had participated in low vision rehabilitation.23 In the United States, the proportion of employment among the blind is as high as 90% in Braille literates and is as low as 33% in the Braille illiterate.24 The inclination of the blind for rehabilitation in this study is poor as is expected in a developing country where rehabilitation centers are few, education level low and socio‑cultural barriers rampant despite the high magnitude of blindness. In stark contrast to the Nigerian study,8 where many blind ended up as street beggars, there have been “blind achievers” in various fields including sports.25 The blind population should follow examples of Indian blind achievers like blind chess players trained by the All India chess federation for the blind,26 blind Indian musicians like Ravindra Jain and the black concert group, social workers and many others. The success of the blind achievers indicates that an overall development of the blind is possible although, only through a planned strategy. The reasons quoted for high change‑readiness scores indicated good motivation and enthusiasm to improve their living condition and the reasons for poor change‑readiness indicate barriers to effective blind rehabilitation. These factors can be used as a “guide” in planning and implementing blind rehabilitation programs. The most valuable factor noted in our study was the strong family support and bonding. This attribute should act as a scaffold on which the blind persons can take steps for rehabilitation.
CONCLUSION Blindness not only affects visual perception, but is also likely to cause depression, affect family and social life, occupation and mobility. The NPCB in India should focus on empowering the blind by extending blind rehabilitation services to encompass all the blind in India. Centers offering blind rehabilitation facilities need increased visibility, funding and promotion so that their facilities may be extended to all the individuals with irreversible blindness. There is a need to identify residual functional vision in every blind person and help transform this into their strength using appropriate low vision devices. Hospitals and ophthalmologists need to treat the “blind person” and not the “blind eye” through a multidisciplinary approach. Coordination with other centers namely, low vision centers, vocational training centers, motility centers, psychiatry department, psychology department, medico‑social workers, etc., should become a routine practice in the management of the blind. A general awareness of blindness,
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its impact on the person, family and society and the need for rehabilitation should be imparted in the general population. Social issues such as taboos should be addressed. The proactive involvement of the family members in the rehabilitation of the blind should be emphasized and internalized so that it becomes effortless to make a blind individual an independent motivated achiever. Change‑management is what the blind needs and change‑readiness is poor. Are we turning a blind eye toward the blind? The onus of responsibility rests on the shoulders of the health policy makers, rehabilitation centers, hospitals.
ACKNOWLEDGMENTS The authors acknowledge the support of ICMR STS program for the encouragement and financial support and also thank to Ms. Neevan, Yenepoya University for helping with the statistical analysis.
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World Health Organization. Available from: http://www.who. int/blindness/en/index.html. [Last accessed on 2011 Sep 10]. 2. Koenes SG, Karshmer JF. Depression: A comparison study between blind and sighted adolescents. Issues Ment Health Nurs 2000;21:269‑79. 3. Banerjee A, Kumar S, Kulhara P, Gupta A. Prevalence of depression and its effect on disability in patients with age‑related macular degeneration. Indian J Ophthalmol 2008;56:469‑74. 4. Fitzgerald RG. Reactions to blindness. An exploratory study of adults with recent loss of sight. Arch Gen Psychiatry 1970;22:370‑9. 5. Rasmussen ML. The eye amputated‑consequences of eye amputation with emphasis on clinical aspects, phantom eye syndrome and quality of life. Acta Ophthalmol 2010;88 Thesis 2:1‑26. 6. Bernbaum M, Albert SG, Duckro PN, Merkel W. Personal and family stress in individuals with diabetes and vision loss. J Clin Psychol 1993;49:670‑7. 7. Bambara JK, Owsley C, Wadley V, Martin R, Porter C, Dreer LE. Family caregiver social problem‑solving abilities and adjustment to caring for a relative with vision loss. Invest Ophthalmol Vis Sci 2009;50:1585‑92. 8. Ademola‑Popoola DS, Tunde‑Ayinmode MF, Akande TM. Psychosocial characteristics of totally blind people in a Nigerian city. Middle East Afr J Ophthalmol 2010;17:335‑42. 9. National Programme for Control of Blindness. Ministry of Health and Family Welgare, India. Available from: http://npcb.nic. in/. [Last accessed on 2013 Jul 9]. 10. KLR‑Change‑management. Available from: http://www.klr.com/
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articles/Articles_ChangeManagement _change_readiness_ assessement.pdf. [Last accessed on 2013 Jul 9]. 11. Sihota R, Tandon R. Parsons’ Diseases of the Eye. 19th ed. New Delhi: Elsevier Publications; 2003. 12. Richter P, Werner J, Heerlein A, Kraus A, Sauer H. On the validity of the beck depression inventory. A review. Psychopathology 1998;31:160‑8. 13. Available from: http://whqlibdoc.who.int/gender/2002/a85574. pdf. [Last accessed on 2013 Jul 9]. 14. Abou‑Gareeb I, Lewallen S, Bassett K, Courtright P. Gender and blindness: A meta‑analysis of population‑based prevalence surveys. Ophthalmic Epidemiol 2001;8:39‑56. 15. A v a i l a b l e f r o m : h t t p : / / u p d a t e o x . c o m / i n d i a / state‑wise‑sex‑ratio‑in‑india‑in‑2011‑compared‑with‑ 2001‑census/. [Last accessed on 2013 Jul 9]. 16. Dineen B, Foster A, Faal H. A proposed rapid methodology to assess the prevalence and causes of blindness and visual impairment. Ophthalmic Epidemiol 2006;13:31‑4. 17. Rees G, Tee HW, Marella M, Fenwick E, Dirani M, Lamoureux EL. Vision‑specific distress and depressive symptoms in people with vision impairment. Invest Ophthalmol Vis Sci 2010;51:2891‑6. 18. Hayman KJ, Kerse NM, La Grow SJ, Wouldes T, Robertson MC, Campbell AJ. Depression in older people: Visual impairment and subjective ratings of health. Optom Vis Sci 2007;84:1024‑30. 19. Nyman SR, Gosney MA, Victor CR. Psychosocial impact of visual impairment in working‑age adults. Br J Ophthalmol 2010;94:1427‑31. 20. Shulz PJ. Reaction to the loss of sight. In: Pearlman J, Adams G, Sloan S, editors. Psychiatric Problems in Ophthalmology. Springfield, IL: Charles C Thomas; 1977. p. 60‑73. 21. Alma MA, van der Mei SF, Melis‑Dankers BJ, van Tilburg TG, Groothoff JW, Suurmeijer TP. Participation of the elderly after vision loss. Disabil Rehabil 2011;33:63‑72. 22. Horowitz A, Brennan M, Reinhardt JP, Macmillan T. The impact of assistive device use on disability and depression among older adults with age‑related vision impairments. J Gerontol B Psychol Sci Soc Sci 2006;61:S274‑80. 23. Mwilambwe A, Wittich W, Freeman EE. Disparities in awareness and use of low‑vision rehabilitation. Can J Ophthalmol 2009;44:686‑91. 24. Available from: http://www.blindmassageintl.com/ news/3/2010‑8‑17/Braille‑literacy‑statistics.html. [Last accessed on 2011 Sep 10]. 25. Available from: http://www.disabled‑world.com/artman/ publish/famous‑blind.shtml. [Last accessed on 2011 Sep 10]. 26. Available from: http://www.aicfb.in/index.asp. [Last accessed on 2013 Jul 04]. Cite this article as: Shetty R, Kulkarni UD. Change-readiness of the blind: A hospital based study in a coastal town of South India. Middle East Afr J Ophthalmol 2014;21:158-64. Source of Support: ICMR STS program 2011 in the form of stipend to the student for conducting the research , Conflict of Interest: None declared.
Middle East African Journal of Ophthalmology, Volume 21, Number 2, April - June 2014
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