An investigation into the psychosocial implications of Oculocutaneous Albinism. a case study of Manicaland Albino Association.

Abstract

The study sought to investigate the psychosocial implications of oculocutaneous albinism (OCA) among members of the Manicaland Albino Association in Mutare urban. The study was anchored on four objectives that were: to establish the psychosocial challenges that members of the Manicaland Albino Association are facing in Mutare urban, to establish the attitudes and beliefs associated with oculocutaneous albinism among members of the Manicaland Albino Association in Mutare urban, to explore the extent of stigma and discrimination among members of the Manicaland Albino Association in Mutare urban and finally to establish the coping strategies being employed by members of the Manicaland Albino Association in Mutare urban. In order to comprehend oculocutaneous albinism as a disability and its psychosocial implications the study utilized the social model of disability as its theoretical foundation. Data was gathered using the simple random sampling technique to target 30 respondents with OCA.The study purposively identified 3 key informants which included the chairperson of the Manicaland Albino Association, the coordinator of the National Association of Non-governmental Organizations Mutare and the Department of Social Services head Mutare. Additional data also came from the purposively selected 2 focus group discussions, one with persons with albinism and the other with care facilitators. Employing the Rosenberg self esteem scale, 30 respondents were interviewed to measure their self esteem scores. The study established that psychosocial challenges faced by persons with OCA include stigma and discrimination and they have influenced the society behaviour and attitudes towards them. Some of the psychosocial challenges confronting persons with OCA manifested themselves in the marriage institution whereby they were finding it complicated to establish steady marriage partnerships owing to the myths and misconceptions aggravated by a society that is yet to entirely comprehend the condition. The condition for women with OCA was further compounded by gender dynamics. Findings on the marital status, level of self esteem, educational level and types of employment points to the fact that institutional discrimination as conceived by the social model of disability is negatively affecting the quality of life of persons with OCA. The study established that stigma and discrimination provoked emotions like anger and crying and in some cases it leads to depression. The study established that in face of these challenges persons with OCA engage coping strategies that range from emotional release and social support from the church, individuals and other non religious organisations. The research established that the family plays a critical role in accommodating persons with OCA. From the study 100% of the respondents felt that the family understands and appreciate the condition. The study concluded that persons with OCA do face psychosocial challenges hence it came up with recommendations that will challenge the stigma and discriminations faced by persons with OCA.This include an aggressive awareness campaign on the rights of persons with OCA and the amendment of the Disabled Persons Act (chapter 17.01) that will enable persons with OCA to have a legal backing in an effort to address issues of social exclusion.