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Title: Quality Of Life Of People With Vitiligo
Other Titles: A Qualitative Phenomenological approach
Authors: Tarur, Naveen Krishna
Keywords: Vaishali Kohle
School of Social Work
Vitiligo - Quality of Life
Issue Date: 2018
Abstract: Vitiligo is a common, heritable, acquired pigmentary disorder in which Pigment cells in the skin, mucous membranes, and the retina in eyes are destroyed. Their destruction results in loss of natural skin colour. Depigmented white patches surrounded by a normal or pigmented areas appear on different parts of the body thereby giving a disfigured body image to self and others thereby affecting social relationships. This cascades into severe psychosocial stress and one may experience stigma in their lifetime within family and society. Vitiligo with unknown aetiology, is estimated to be affecting about 1% of population worldwide, without any predilection to race, gender and age of onset. In India, this disorder is associated with type of Skin colour resulting into diverse range of Social stigma. This creates severe psychosocial trauma and resulting social isolation creates retardation in individual’s personality development. Vitiligo, in the context of disability, in addition to psychosocial hindrances, if considered as organ failure of skin due to 'impairment of skin pigmentation', may even affect the activities of daily life. A person with vitiligo on exposed skin depending on severity, may not be able to work under the sun for long hours due to severe sun burn. The participation in society may get affected in cases of marriage, jobs and employment etc. Vitiligo can affect quality of life, self-esteem, marriage, and employment, especially in darker skinned individuals and in certain cultures because of confusion with leprosy and other contagious skin diseases. Loss of pigment may also be viewed by patients in some culture as a threat to racial identity. Rationale for the current study Although numerous research studies have been carried out exploring lives of persons with vitiligo, majority of the studies are of western origin and those of Indian origins are hospital based and quantitative in nature. They are conducted by dermatologists on treatment seeking population, often investigating some treatment protocols or QoL assessment tools. These studies lack sociological theoretical aspects in their studies. So any quantification of a phenomenon, which is essentially experiential in nature, must be qualitatively studied. Existing quantitative studies which are conducted by clinicians have led to the neglect of many sociological aspects of experiential nature of persons with vitiligo. These studies have not been able to project the gravity of various issues of quality of life, Social Stigma, Social Inclusion, Disability etc. Vitiligo stigma constructs vary from one cultural setting to other, thus Quality of life of PwV are affected differently from one region to other. Indian skin types are diverse in nature. South India poses a typical ecosystem of its own, being in tropics it has different skin type from other parts of India. Its religious-dietary-socio-cultural fabric is also quite different from rest of India. The south Indian skin, being dark-brown, makes vitiligo more visible because of the contrast between depigmented and natural skin colour resulting in higher severity of socially repelling appearance. Hence, the experiential aspects of PwV in south India may be different from other studies. Hence there is need for this research. Goal and Objectives of this Study The overall goal of this research has been to uncover, in the voices of persons living with vitiligo, how they experience living with vitiligo, its social stigma, and the coping mechanisms and to establish theoretical underpinnings for their life experiences The main objectives of this study are 1. To study the life experiences and challenges faced by persons with vitiligo, right from its onset. 2. To study the overall stigma experiences of persons with vitiligo from intimate personal level to societal level and coping skills adopted 3. To study prevailing Quality of Life of Persons with Vitiligo 4. To explore disability models and its suitability for Vitiligo from experiential aspects of Persons with vitiligo. 5. To provide suitable recommendations and suggestions for policy framework to further improve QoL of PwV. Theoretical framework used for this study are  Social Stigma- Classical Theory of Goffman and its Recent Extensions  Goffman’s Concept of Dramaturgy  Kubler-Ross’s 5 stages of Grief as Healing Process  Self-Concept and Body Image by McFarland.  Common Sense Model of Illness perception and coping behaviour by Leventhal Research Methodology This study has been designed as exploratory, because vitiligo ecosystem is grossly under researched from sociological perspective. This study aims at evaluating live experiences of people living with vitiligo, hence it is designed as a qualitative research with Interpretative phenomenological analytical method. Purposive Sampling involving PwV of more than 18 years, living in south India, having contracted vitiligo for more than 2 years without any other disability has been adopted. Thematic saturation has been reached by 16-18 interviews and totally 22 PwVs have been interviewed. Considerations to ethics, bracketing, sensitive........
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01_Title Page.pdf81.49 kBAdobe PDFView/Open
02_Declaration.pdf79.26 kBAdobe PDFView/Open
03_Certificate.pdf79.29 kBAdobe PDFView/Open
04_Acknowledgement.pdf79.01 kBAdobe PDFView/Open
05_Dedication.pdf2.3 kBAdobe PDFView/Open
06_Abstract.pdf105.9 kBAdobe PDFView/Open
07_Contents.pdf353.74 kBAdobe PDFView/Open
08_List Of Abbreviations.pdf4.46 kBAdobe PDFView/Open
09_List Of Figures.pdf175.62 kBAdobe PDFView/Open
10_List Of Tables.pdf82.33 kBAdobe PDFView/Open
11_Chapter 1.pdf283.66 kBAdobe PDFView/Open
12_Chapter 2.pdf751.95 kBAdobe PDFView/Open
13_Chapter 3.pdf485.81 kBAdobe PDFView/Open
14_Chapter 4.pdf807.16 kBAdobe PDFView/Open
15_Chapter 5.pdf203.79 kBAdobe PDFView/Open
16_Chapter 6.pdf428.28 kBAdobe PDFView/Open
17_Chapter 7.pdf230.4 kBAdobe PDFView/Open
18_Annexure.pdf324.89 kBAdobe PDFView/Open
19_References.pdf216.63 kBAdobe PDFView/Open

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