GOING BEYOND SKIN DEEP: LIFE AFTER LEPROSY
DOI:
https://doi.org/10.31674/mjn.2019.v10i04.004Abstract
Leprosy is a chronic disease wherein symptoms may appear after 5-20 years from infection of the bacteria Mycobacterium leprae wherein it causes irreversible physiologic effects. This study aimed to explore the experiences of individuals after being cured from leprosy. The methodology used was Husserlian phenomenology and Colaizzi’s method during the analysis phase. A total of five (5) informants participated in the study. Three (3) themes emerged in this study. The first theme is Challenges and Difficulties in life with 2 subthemes, Social Disconnection; and Psychological Issues. The second theme is Uncertainty in Life with subthemes of, Feeling Lost; and Sense of Stagnation. The last theme generated is Regaining Clarity and Meaning of Life with the following subthemes of, Sense of Belongingness; Sense of Liberation; and Improved Quality of Life. Social Stigma took the lead as the cause of the difficulties and challenges leprosy survivors have to endure and the reason why the reintegration of leprosy survivors back to their communities of origin would fail. It is recommended that the leprosy survivors can form a well-developed community composed of good social networks with other survivors and their families.
Keywords:
Leprosy, Leprosy Survivors, Lived Experiences, Phenomenology, Social StigmaDownloads
References
Abedi, H., Javadi, A. & Naji, S. (2013). An Exploration of Health, Family and Economic Experiences of Leprosy patients, Iran. Pakistan Journal of Biological Sciences, 16(18), pp 927- 932.
Bakare, A., Yusuf, A., Habib, Z. & Obembe, A. (2015). Anxiety and Depression: A Study of People with Leprosy in Sokoto, North- Western Nigeria. Journal of Psychiatry.
Behnke, E.A. (n.d.). Edmund Husserl: Phenomenology of Embodiment. Internet Encyclopedia of Philosophy. Retrieved from http://www.iep.utm.edu/husspemb/
Bergman, L. & Britton, A. (2014). Nurse's experiences of leprosy related stigma in Ghana. Master’s thesis Ersta Skondal Hogskola, Sweden. Retrieved from: http://www.diva- portal.org/smash/record.jsf?pid=diva2%3A726710&dswid=-2537
Chinguo, D. & Duncan, M.A. (2011). Comparison of the quality of life between survivors of leprosy living in a leprosarium and those re-integrated in their communities in the southern region of Malawi. PhD Thesis, University of Cape Town, South Africa.
Colaizzi, P. F. (1978). Psychological research as the phenomenologist views it. In R. S. Valle &
M. King (Eds.), Existential phenomenological alternatives for psychology, pp. 48-71. New York, NY: Plenum.
Cornwell, E.Y. & Waite, L.J. (2009). Social Disconnectedness, Perceived Isolation, and Health among Older Adults. Journal of Health Science Behavior, 50(1), pp 31-38.
Department of Health (DOH) (2016). Leprosy. Health Advisory. Retrieved from: https://www.doh.gov.ph/Health-Advisory/Leprosy
Dudovskiy, J. (2015). The Ultimate Guide to Writing a Dissertation in Business Studies: A Step- by-Step Assistance. Retrieved from: http://research-methodology.net/sampling-in-primary-data- collection/theoretical-sampling/
Grupe, D.W. & Nitschke, J.B. (2013). Uncertainty and Anticipation in Anxiety: An integrated neurobiological and psychological perspective. National Reviews. Neuroscience, 14(7), pp 488- 501.
Hesse-Biber, S. & Leavy, P.L. (2016) The Practice of Qualitative Research. 2nd Edition. SAGE Publications, Inc, USA.
Hoang, L. & Yen, N. (2015). Living leprosy in Vietnam: Care, affliction and agency in the shadows of a cure. PhD Thesis. Australian National University, Australia.
McConnell, A. (2013). Belongingness: Essential Bridges that Support the Self. Psychology Today: Recent research is establishing the critical nature of social belongingness. Psychology Today. Retrieved from: https://www.psychologytoday.com/intl/blog/the-social- self/201308/belongingness-essential-bridges-support-the-self
McLeod, S.A. (2012). Low Self Esteem. Simply Psychology. Retrieved from https://www.simplypsychology.org/self-esteem.html.
Peters, R.M.H. (2015). I am not shy ... so I don't have leprosy, right?": Understanding and assessing leprosy-related stigma and the effect of stigma-reduction interventions in Cirebon District, Indonesia. PhD Thesis. Vrije Universiteit Amsterdam, Netherlands.
Proto, R.S., Filho, C.D., Rehder, J. R., Paixão, M.P. & Angelucci, R.I. (2010). Quality of life in leprosy: a comparative analysis between patients in the Amazon region and patients in Santo André in the ABC region of São Paulo, Brazil. Anais Brasileiros de Dermatologia, 85(6), pp 939-941.
Santos, V.S., Oliveira, L.S., Castro, F.D., Gois-Santos, V.T., Lemos, L.M., Ribeiro, Mdo.C., Cuevas, L.E. & Gurgel, R.Q. (2015). Functional Activity Limitation and Quality of Life of Leprosy Cases in an Endemic Area in Northeastern Brazil. PLOS Neglected Tropical Disease, 9(7), e0003900.
Singh, G.P. (2012). Psychosocial aspects of Hansen's disease (leprosy). Indian Dermatology Online Journal, 3(3), pp 166-170.
Soka Gakkai International (2011). Attachments and Liberation. Soka Gakkai International: Buddhism in Action for Peace. Retrieved from: https://www.sgi.org/about-us/buddhist- concepts/attachments-and-liberation.html
van Baarsen, B., Snijders, T.A.B, Smit, J.H. & van Duijn, M.A.J. (2001). Lonely but Not Alone: Emotional Isolation and Social Isolation as Two Distinct Dimensions of Loneliness in Older People. Educational and Psychological Measurement, 61(1), pp 119-135
World Health Organization (WHO) (2016). Leprosy Factsheet Retrieved from http://www.who.int/mediacentre/factsheets/fs101/en/
World Health Organization (WHOQOL) Measuring Quality of Life (WHO) (1997). Retrieved from http://www.who.int/mental_health/media/68.pdf
Yang, Y.K. (2014). Life experiences of Korean patients with Hansen's disease in Sorok Island Hospital. Journal of Korean Academy of Nursing, 44(6), pp 639-648.
