Quality of Life of the Blind: Looking through a Wider “Lens” Beyond the Medical “Eye”

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  •   Vandhana Dunuwila

  •   Sumudu Perera

  •   Theekshana Suraweera

  •   Janaka Fernando

Abstract

Over one-fourth of the global population experience Visual Impairment and Blindness (VI&B) where they often experience significant challenges than those who can 'see'. Despite the subject of Quality of Life (QoL) being extensively researched, there is little or no focus on explaining this concept as applicable to persons with VI&B. Furthermore, there is no unified characterization of QoL as a construct although diverse views have been presented in general. This paper seeks to explore the concept of QoL in the specific domain of persons with VI&B. In the process, a comprehensive literature search was carried out using multiple electronic databases where 239 publications were consulted. Selected papers were subjected to a content analysis to identify conceptual and measurement principles pertaining to their QoL. The existing vision-specific QoL instruments are mostly domain specific and focus on the medical aspect of a life of quality, disregarding the influence of environmental and personal factors that contribute to their well-being. Results of the analysis pointed to the fact that QoL of persons with VI&B should draw attention to their specific needs, expectations, and values, where a comprehensive characterization that encompasses physical, psychological, social, material, and environmental aspects, along with an evaluation of the individual’s participation, autonomy, personal development, and the impact of vision requires to be explored. This multi-dimensional conceptual model could be used as the basis for the development of a new measure for the assessment of overall quality of life for persons with VI&B.

Keywords: Blindness, Quality of Life, Visual Impairment

References

Adigun, K., Oluleye, T. S., Ladipo, M. M., & Olowookere, S. A. (2014). Quality of life in patients with visual impairment in Ibadan: a clinical study in primary care. Journal of multidisciplinary healthcare, 7, 173–178. https://doi.org/10.2147/JMDH.S51359.

Amedo, A., Adade, S., Koomson, N., & Osae, E. (2016). Influence of Visual Impairment on the Quality of Life: A Survey of Patients Reporting at The Low Vision Centre of the Eastern Regional Hospital of Ghana. Journal of Ophthalmic Science, 1(3), 1–13. https://doi.org/10.14302/issn.2470-0436.jos-16-940.

Anderson, R., Warren, N., Misajon, R., & Lee, S. (2020). Exploring Wellbeing in Youth with Vision Impairment: Insights for Vision Rehabilitation. Applied Research in Quality Life, 15, 1183–1202. https://doi.org/10.1007/s11482-019-09724-1.

Asroruddin, M., Artini, W., Gondhowiarjo, T. D., Rahayu, T., & Lestari, Y. D. (2017). Impacts of Impaired Vision and Eye Diseases on Vision-Related Quality of Life in Indonesia. Makara Journal of Health Research, 23(3), 104-110. https://doi.org/10.7454/msk.v21i3.7612.

Barry, J. A., Mollan, S., Burdon, M. A., Jenkins, M., & Denniston, A. K. (2017). Development and validation of a questionnaire assessing the quality of life impact of Colour Blindness (CBQoL). BMC ophthalmology, 17(1), 179. https://doi.org/10.1186/s12886-017-0579-z.

Béchetoille, A., Arnould, B., Bron, A., Baudouin, C., Renard, J. P., Sellem, E., Brouquet, Y., Denis, P., Nordmann, J. P., Rigeade, M. C., Bassols, A., Benmedjahed, K., Guillemin, I., & Rouland, J. F. (2008). Measurement of health-related quality of life with glaucoma: validation of the Glau-QoL 36-item questionnaire. Acta ophthalmologica, 86(1), 71–80. https://doi.org/10.1111/j.1600-0420.2007.00999.x.

Brady, C. J., Keay, L., Villanti, A., Ali, F. S., Gandhi, M., Massof, R. W., & Friedman, D. S. (2010). Validation of a Visual Function and Quality of Life Instrument in an Urban Indian Population with Uncorrected Refractive Error Using Rasch Analysis. Ophthalmic Epidemiology, 17(5), 282–291. https://doi.org/10.3109/09286586.2010.511756.

Brown, R. L., & Barrett, A. E. (2011). Visual impairment and quality of life among older adults: an examination of explanations for the relationship. Psychological sciences and social sciences, 66(3), 364–373. https://doi.org/10.1093/geronb/gbr015.

Burton, M. J., Ramke, J., Marques, A. P., Bourne, R. R. A., Congdon, N., Jones, I., et al. The Lancet Global Health Commission on Global Eye Health: vision beyond 2020. The Lancet Global Health., 2021 February 16, 9(4), 489–551.

Campbell, A., & Converse, P. E. (1972). The Human Meaning of Social Change. The Russell Sage Foundation.

Carta, A., Braccio, L., Belpoliti, M., Soliani, L., Sartore, F., Gandolfi, S. A., et al. Self-assessment of the quality of vision: association of questionnaire score with objective clinical tests. Current eye research., 1998 May, 17(5), 506–511. https://doi.org/10.1076/ceyr.17.5.506.5191.

Cumberland, P. M., & Rahi, J. S. (2016). Visual Function, Social Position, and Health and Life Chances. JAMA Ophthalmology. https://doi.org/10.1001/jamaophthalmol.2016.1778.

Donovan, J. L., Brookes, S. T., Laidlaw, D. A. H., Hopper, C. D., Sparrow, J. M., & Peters, T. J. (2003). The development and validation of a questionnaire to assess visual symptoms/dysfunction and impact on quality of life in cataract patients: the Visual Symptoms and Quality of life (VSQ) Questionnaire. Ophthalmic Epidemiology, 10(1), 49–65. https://doi.org/10.1076/opep.10.1.49.13775.

Du Toit, R., Palagyi, A., Ramke, J., Brian, G., & Lamoureux, E. L. (2008). Development and validation of a vision-specific quality-of-life questionnaire for Timor-Leste. Investigative ophthalmology & visual science, 49(10), 4284–4289. https://doi.org/10.1167/iovs.08-1893.

Erickson, D. B., Stapleton, F., Erickson, P., Du Toit, R., Giannakopoulos, E., & Holden, B. (2004). Development and validation of a multidimensional quality-of-life scale for myopia. Optometry and vision science: official publication of the American Academy of Optometry, 81(2), 70–81. https://doi.org/10.1097/00006324-200402000-00004.

Felce, D., & Perry, J. (1995). Quality of life: its definition and measurement. Research in developmental disabilities, 16(1), 51–74. https://doi.org/10.1016/0891-4222(94)00028-8.

Fletcher, A. E. (1997). Measurements of Vision Function and Quality of Life in Patients with Cataracts in Southern India. Archives of Ophthalmology, 115(6), 767. https://doi:10.1001/archopht.1997.01100150769013.

Frost, N. A., Sparrow, J. M., Durant, J. S., Donovan, J. L., Peters, T. J., & Brookes, S. T. (1998). Development of a questionnaire for measurement of vision-related quality of life. Ophthalmic Epidemiology, 5(4), 185–210. https://doi.org/10.1076/opep.5.4.185.4191.

Gyawali, R., Paudel, N., & Adhikari, P. (2012). Quality of life in Nepalese patients with low vision and the impact of low vision services [Calidad de vida en pacientes nepaleses con baja visión e impacto de los servicios de baja visión]. Journal of Optometry, 5(4), 188–195. https://doi.org/10.1016/j.optom.2012.05.002.

Habsyiyah, H., Lestari, Y. D., Ariawan, I., & Gondhowiardjo, T. D. (2015). Relationship of socioeconomic factors with vision-related quality of life on severe low vision and blind population in Indonesia. Medical Journal of Indonesia, 24(4), 245-51. https://doi.org/10.13181/mji.v24i4.1245.

Hatt, S. R., Leske, D. A., Bradley, E. A., Cole, S. R., & Holmes, J. M. (2009). Development of a quality-of-life questionnaire for adults with strabismus. Ophthalmology, 116(1), 139–144.. https://doi.org/10.1016/j.ophtha.2008.08.043.

Hays, R. D., Mangione, C. M., Ellwein, L., Lindblad, A. S., Spritzer, K. L., & McDonnell, P. J. (2003). Psychometric properties of the National Eye Institute-Refractive Error Quality of Life instrument. Ophthalmology, 110(12), 2292–2301. https://doi.org/10.1016/j.ophtha.2002.07.001.

Juniper, E. F, Guyatt, G. H. (1991). Development and testing of a new measure of health status for clinical trials in rhinoconjunctivitis. Clinical & Experimental Allergy, 21, 77-83.

Juniper, E. F., Howland, W. C., Roberts, N. B., Thompson, A. K., & King, D. R. (1998). Measuring quality of life in children with rhinoconjunctivitis. The Journal of allergy and clinical immunology, 101(2 Pt 1), 163–170. https://doi.org/10.1016/s0091-6749(98)70380-x.

Khadka, J., Ryan, B., Margrain, T. H., Court, H., & Woodhouse, J. M. (2010). Development of the 25-item Cardiff Visual Ability Questionnaire for Children (CVAQC). The British journal of ophthalmology, 94(6), 730–735. https://doi.org/10.1136/bjo.2009.171181.

Klein, B. E., Klein, R., Lee, K. E., & Cruickshanks, K. J. (1998). Performance-based and self-assessed measures of visual function as related to history of falls, hip fractures, and measured gait time. The Beaver Dam Eye Study. Ophthalmology, 105(1), 160–164. https://doi.org/10.1016/s0161-6420(98)91911-x.

Langelaan, M., De Boer, M. R., Van Nispen, R. M., Wouters, B., Moll, A. C., & Van Rens, G. H. (2007). Impact of visual impairment on quality of life: a comparison with quality of life in the general population and with other chronic conditions. Ophthalmic epidemiology, 14(3), 119–126. https://doi.org/10.1080/09286580601139212.

Lee, J., Lee, J., Park, K., Cho, W., Kim, J. Y., & Kang, H. Y. (2005). Assessing the value of laser in situ keratomileusis by patient-reported outcomes using quality of life assessment. Journal of refractive surgery, 21(1), 59–71.

Mangione, C. M., Lee, P. P., Gutierrez, P. R., Spritzer, K., Berry, S., Hays, R. D., & National Eye Institute Visual Function Questionnaire Field Test Investigators (2001). Development of the 25-item National Eye Institute Visual Function Questionnaire. Archives of ophthalmology, 119(7), 1050–1058. https://doi.org/10.1001/archopht.119.7.1050.

McDougall, J., Wright, V., & Rosenbaum, P. (2010). The ICF model of functioning and disability: incorporating quality of life and human development. Developmental neurorehabilitation, 13(3), 204–211. https://doi.org/10.3109/17518421003620525.

Misajon, R., Hawthorne, G., Richardson, J., Barton, J., Peacock, S., Iezzi, A., et al. Vision and quality of life: the development of a utility measure. Investigative ophthalmology & visual science., 2005 November, 46(11), 4007–4015. https://doi.org/10.1167/iovs.04-1389.

Mitchell, J., Wolffsohn, J., Woodcock, A., Anderson, S. J., Ffytche, T., Rubinstein, M., et al. The MacDQoL individualized measure of the impact of macular degeneration on quality of life: reliability and responsiveness. American journal of ophthalmology., 2008 September, 146(3), 447–454. https://doi.org/10.1016/j.ajo.2008.04.031.

Muhammed, Z., & Abubakar, I. R. (2019). Improving the Quality of Life of Urban Communities in Developing Countries. In: Leal Filho, W., Azul, A., Brandli, L., Özuyar, P. & Wall, T. (eds) Responsible Consumption and Production. Encyclopedia of the UN Sustainable Development Goals. Springer, Cham. https://doi.org/10.1007/978-3-319-71062-4_25-1.

Murthy, G.V.S., Schmidt, E., Gilbert, C., Edussuriya, K., & Pant, H.B. (2018). Impact of blindness, visual impairment and cataract surgery on quality of life and visual functioning among adults aged 40 years and above in Sri Lanka. Ceylon Medical Journal, 63(5), 26–32. http://doi.org/10.4038/cmj.v63i5.8739.

Oliver, M. (1981). A new model of the social work role in relation to disability’, in J. Campling (ed.), The handicapped person: A new perspective for social workers, (1st ed., pp. 19-32). RADAR, London.

Olkin, R. (1999). What psychotherapists should know about disability, Guilford Press.

Panigrahi, A., Nageswar Rao, G., & Kumari Konar, A. (2021). Vision-Related Quality of Life and Its Sociodemographic Correlates Among Individuals with Visual Impairments. Journal of Visual Impairment & Blindness, 115(4), 319–328. https://doi.org/10.1177/0145482X211028938.

Paudel, P., Khadka, J., Burnett, A., Hani, Y., Naduvilath, T., & Fricke, T. R. (2015). Papua New Guinea vision-specific quality of life questionnaire: a new patient-reported outcome instrument to assess the impact of impaired vision. Clinical & Experimental Ophthalmology, 43(3), 202–213. https://doi.org/10.1111/ceo.12413.

Pesudovs, K., Garamendi, E., & Elliott, D. B. (2006). The Contact Lens Impact on Quality of Life (CLIQ) Questionnaire: development and validation. Investigative ophthalmology & visual science, 47(7), 2789–2796. https://doi.org/10.1167/iovs.05-0933

Porio, E. (2015). Sustainable development goals and quality of life targets: Insights from Metro Manila. Current Sociology, 63(2), 244–260. https://doi.org/10.1177/0011392114556586.

Post, M. W. (2014). Definitions of quality of life: what has happened and how to move on. Topics in spinal cord injury rehabilitation, 20(3), 167–180. https://doi.org/10.1310/sci2003-167.

Power, M. J., Green, A. M., & WHOQOL-Dis Group (2010). Development of the WHOQOL disabilities module. Quality of life research: an international journal of quality of life aspects of treatment, care and rehabilitation, 19(4), 571–584. https://doi.org/10.1007/s11136-010-9616-6.

Richardson, J., Iezzi, A., Sinha, K., Khan, M., Peacock, S., Hawthorne, G., Misajon, R., & Keeffe, J. (2009). AQoL-7D (Vision) Instrument: Overview, survey results and ultility algorithms. https://www.academia.edu/2726485/AQoL_7D_Vision_Instrument.

Salvador-Carulla, L., Lucas, R., Ayuso-Mateos, J. L., & Miret, M. (2014). Use of the terms "Wellbeing" and "Quality of Life" in health sciences: a conceptual framework. The European Journal of Psychiatry, 28(1), 50-65. https://dx.doi.org/10.4321/S0213-61632014000100005.

Schalock, R.L., & Verdugo, M.A. (2002). Handbook on Quality of Life for human service practitioners. American Association on Mental Retardation.

Schalock, R. L., Verdugo, M. A., Gomez, L. E., & Reinders, H. S. (2016). Moving Us Toward a Theory of Individual Quality of Life. American journal on intellectual and developmental disabilities, 121(1), 1–12. https://doi.org/10.1352/1944-7558-121.1.1.

Sirgy, M., Michalos, A., Ferriss, A., Easterlin, R., Patrick, D., & Pavot, W. (2006). The Quality-of-Life (QOL) Research Movement: Past, Present, and Future. Social Indicators Research, 76(3), 343-466. https://doi.org/10.1007/s11205-005-2877-8.

Siu, K. W. M., Xiao, J. X., & Wong, Y. L. (2021). Quality Open Space Experiences for the Visually Impaired. Applied Research Quality Life, 16, 183–199. https://doi.org/10.1007/s11482-019-09758-5.

Sukhawarn, R., Wiratchai, N., Tatsanavivat, P., Pitiyanuwat, S., Kanato, M., Srivannaboon, S., & Guyatt, G. H. (2011). Development of a refractive error quality of life scale for Thai adults (the REQ-Thai). Journal of the Medical Association of Thailand = Chotmaihet thangphaet, 94(8), 978–984.

Terwee, C. B., Gerding, M. N., Dekker, F. W, Prummel, M. F., & Wiersing, W. M. (1998). Development of a disease specific quality of life questionnaire for patients with Graves’ ophthalmopathy: the GO-QOL. British Journal of Ophthalmology, 82(7), 773-779. http://dx.doi.org/10.1136/bjo.82.7.773.

Uenishi, Y., Tsumura, H., Miki, T., & Shiraki, K. (2003). Quality of life of elderly Japanese patients with glaucoma. International Journal of Nursing Practice, 9(1), 18–25. https://doi.org/10.1046/j.1440-172x.2003.00398.x.

Van Hecke, N. V., Claes, C., Vanderplasschen, W., De Maeyer, J., De Witte, N., & Vandevelde, S. (2018). Conceptualization and Measurement of Quality of Life Based on Schalock and Verdugo’s Model: A Cross-Disciplinary Review of the Literature. Social Indicators Research, 137(1), 335–351. https://doi.org/10.1007/s11205-017-1596-2.

Vuletić, G., Šarlija, T., & Benjak, T. (2016). Quality of life in blind and partially sighted people. Journal of Applied Health Sciences, 2(2), 101–112. https://doi.org/10.24141/2/2/3.

West, S. K., Munoz, B., Rubin, G. S., Schein, O. D., Bandeen-Roche, K., Zeger, S., German, S., & Fried, L. P. (1997). Function and visual impairment in a population-based study of older adults. The SEE project. Salisbury Eye Evaluation. Investigative ophthalmology & visual science, 38(1), 72–82.

Wolffsohn, J. S., & Cochrane, A. L. (2000). Design of the low vision quality-of-life questionnaire (LVQOL) and measuring the outcome of low-vision rehabilitation. American journal of ophthalmology, 130(6), 793–802. https://doi.org/10.1016/s0002-9394(00)00610-3.

Woodcock, A., Bradley, C., Plowright, R., Ffytche, T., Kennedy-Martin, T., & Hirsch, A. (2004). The influence of diabetic retinopathy on quality of life. Patient Education and Counseling, 53(3), 365–383. https://doi:10.1016/j.pec.2003.10.007

World Health Organization. (1998). WHOQOL User Manual (p. 2). World Health Organization. https://apps.who.int/iris/handle/10665/77932

World Health Organization. (2002). Towards a Common Language for Functioning, Disability and Health ICF. https://cdn.who.int/media/docs/default-source/classification/icf/icfbeginnersguide.pdf?sfvrsn=eead63d3_4.

World Health Organization. (2019). World report on vision. World Health Organization. https://www.who.int/publications/i/item/9789241516570.

World Health Organization. (2021, February 26). Blindness and vision impairment. https://www.who.int/news-room/fact-sheets/detail/blindness-and-visual-impairment.

Yibekal, B. T., Alemu, D. S., Anbesse, D. H., Alemayehu, A. M., & Alimaw, Y. A. (2020). Vision-Related Quality of Life among Adult Patients with Visual Impairment at University of Gondar, Northwest Ethiopia. Journal of Ophthalmology, 1–7. https://doi.org/10.1155/2020/9056097.

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How to Cite
Dunuwila, V., Perera, S., Suraweera, T., & Fernando, J. (2023). Quality of Life of the Blind: Looking through a Wider “Lens” Beyond the Medical “Eye”. European Journal of Humanities and Social Sciences, 3(2), 1–7. https://doi.org/10.24018/ejsocial.2023.3.2.389