Thesis (M. OPT.) -- University of Limpopo, 2001 / Refer to document

Background: Albinism affects approximately 1 in 17,000 individuals globally with the highest prevalence in SubSaharan Africa with an estimation of 1 in 2000 - 5000 live births and 1 in 2000 live births in Malawi. The total number of people living with albinism in Malawi is estimated to be 7000 - 10,000 of the total population. Albinism is a stigmatised condition particularly in Africa and children are particularly vulnerable. Purpose of the study: to explore and describe the experiences, perceptions and understanding of mothers who have children living with albinism in Malawi. Study design: Qualitative descriptive study. Data collection Methods: The study, conducted between June and July 2018 in Malawi, included voluntary participation of ten mothers 18 years and older who had children with albinism. Purposive sampling was used to select participants who met the inclusion criteria to answer the research question and achieve the purpose of the study. Semi structured interviews were conducted in the participants’ preferred language Chichewa. Interviews were audio recorded and transcribed. Data translation of the questionnaire from English to Chichewa was done by three different translators from Malawi using forward and backward translation. The same process was followed for translation of the data from the interviews. Data analysis: Thematic analysis guided the process of data analysis. Trustworthiness of the data analysis process was maintained. To ensure transparency in reporting the study and to allow replication, reporting guidelines from the equator Network were used to evaluate the quality of the study. The quality of semistructured interviews was evaluated by using the Consolidated Criteria for Reporting Qualitative Studies (COREQ), a 32-item checklist. The Standards for Reporting Qualitative Research (SRQR) were used to evaluate the quality of the completed study. Findings: Four themes emerged from the data: 1) stigmatisation, discrimination and harm, 2) Mothers’ impression of a child with albinism, 3) Mothers’ awareness of albinism and 4) Psychosocial effects of albinism. Conclusion: A description of the experiences and perceptions of mothers of children living with albinism in Malawi and their understanding of the condition has revealed that these children are stigmatised and unsafe in their communities and that these mothers experienced this acutely even though they were overwhelmingly positive about accepting and loving their children and attempted to protect them from harm whatever the cost. Being the first such reported Malawian study it has filled a gap in the existing knowledge in this field and provides a foundation for further research specific to people living with albinism in Malawi

A research report submitted to the Faculty of Humanities, University of the Witwatersrand, Johannesburg, in partial fulfilment of the requirements for the degree of Master of Arts (Clinical Psychology), 2018 / The current research arose from a particular interest in the ways in which different subgroups of men form and navigate their male identities and their masculinities. The decision to focus on the experiences of men living with oculocutaneous albinism stemmed from two inter-related premises: firstly, there is a dearth of research around this particular minority group; and secondly, there has been a call for the life experiences of this particular population to receive greater attention and understanding. Four participants were interviewed using a semi-structured interview schedule. The transcribed data gathered from these interviews was subject to a computer-aided thematic analysis. The findings of the current research suggest that the experiences of being stigmatized due to oculocutaneous albinism were highly injurious to the participants and lead them to internalize a strong sense of shame. This in turn affected the ways in which the participants experienced themselves in the world and interacted with others relationally, including in relation to friendships and more intimate partnerships. All of the participants feared that their albinism would make them less desirable to prospective life partners and were concerned that close others might be stigmatized by association with them. Their experiences appeared to influence the participants’ positioning of themselves in relation to other men and were also implicated in the complex nature of their racial identity. Participants demonstrated a capacity to be reflective about their life experiences and about the responses of others towards them in respect of their condition. / XL2018