Thesis (Ph.D.) - University of Queensland, 2004. / Includes bibliography.

Thesis (M. A. (Clinical Psychology)) --University of Limpopo, 2019 / Students with albinism experience social and academic challenges in society. These challenges are mainly influenced by their disability. Studies indicate that because they look different from most people they are treated differently and socially excluded and marginalised. Albino individual’ are also murdered in South Africa which is motivated by myths, beliefs and misconceptions in traditional African societies. The Social Model of Disability (SMD) underpinned the study as it is used to explore social experiences in different life contexts. The study used a qualitative approach with an exploratory research design. Purposive sampling was used to select the 18 participants. Thematic Content Analysis (TCA) was used to analyse data collected from the three focus groups. The findings of the study revealed that the social experiences of students with albinism are be difficult. They experience discrimination and stigmatisation from their peers and are often called derogatory names. It was also found that students with albinism have academic challenges because of their impaired vision, lecturers’ negative attitudes and insensitivity towards them. It was also found that the lack adequate assistive devices. Social experiences and academic challenges lead to a self-reported negative impact for instance, depression for these students. Ultimately, more awareness initiatives about the condition are required at the institution in order to improve the experiences of students with albinism.

Albinism is an inherited condition affecting at least 1 in 4000 people in Africa. It is thought to be more common among black Africans although it affects the entire human populations. In most African societies, albinism is regarded to be a disability and the social attitudes against albinos are characterised by lack of understanding, fear, and also of prejudice based on the appearance of albinism. There are various myths surrounding albinos such as that they are born as a punishment, that it is a curse to give birth to albinos and that albinos are immortal and that they are in fact spirits. This causes them to be seen as outcasts in society. Albinism is an inherited, congenital condition resulting in reduced synthesis of melanin pigment in the hair, skin and eyes. It leads to a host of lifelong physical health problems, in particular visual impairment and ultraviolet induced skin damage. In Africa such problems are exacerbated by exposure to harsh sunlight and reduced access to adequate health care, especially in rural areas. / Thesis (LLM (Human Rights and Democratisation in Africa)) -- University of Pretoria, 2011. / http://www.chr.up.ac.za/ / nf2012 / Centre for Human Rights / LLM

The purpose of this study was to develop and describe a model for the enhancement of self-concept of people with oculocutaneous albinism based on the experience of the participants. The need to conduct the study was triggered by the researcher’s long-term interaction with people with oculocutaneous albinism, and observation that they are still stigmatised and marginalised by the community. A purposive sample of fifteen participants, consisting of twelve females and three males with oculocutaneous albinism, aged between 18 and 48, participated in the study. The study was conducted in urban and semi-urban areas around the Gauteng Province in South Africa. The study had two theory generative objectives, namely to identify the main concepts of the model from the findings, and to describe the model structure and process. A theory generative, qualitative, explorative, descriptive and contextual research design was used to achieve these objectives. Chinn and Kramer’s (1995:92) four steps of theory-generation were used, namely concept analysis, construction of theoretical relationships, description of the model, and development of guidelines to operationalise the model.Concept analysis involved identification, definition and classification of the concepts to develop the model. In-depth, phenomenological interviews were conducted to explore the participants’ experience. Data analysis and interpretation revealed three main themes from the findings: the participants’ perception of the self; experience with the external environment, and expression of need for development and growth. The main concepts deducted from the findings were “self-concept” and “enhancement” hence “A model for enhancement of self-concept of people with albinism”. Construction of theoretical relationships entailed using deductive reasoning to describe the interaction between the concepts of the model. Description of the model entailed visually portraying and describing the structure and process of the model, as well as evaluating it. Developing guidelines to operationalise the model entailed describing practical strategies to assist health professionals to enhance the self-concept of people with oculocutaneous albinism. / Health Studies / D. Litt. et Phil. (Health Studies)

The purpose of this study was to develop and describe a model for the enhancement of self-concept of people with oculocutaneous albinism based on the experience of the participants. The need to conduct the study was triggered by the researcher’s long-term interaction with people with oculocutaneous albinism, and observation that they are still stigmatised and marginalised by the community. A purposive sample of fifteen participants, consisting of twelve females and three males with oculocutaneous albinism, aged between 18 and 48, participated in the study. The study was conducted in urban and semi-urban areas around the Gauteng Province in South Africa. The study had two theory generative objectives, namely to identify the main concepts of the model from the findings, and to describe the model structure and process. A theory generative, qualitative, explorative, descriptive and contextual research design was used to achieve these objectives. Chinn and Kramer’s (1995:92) four steps of theory-generation were used, namely concept analysis, construction of theoretical relationships, description of the model, and development of guidelines to operationalise the model.Concept analysis involved identification, definition and classification of the concepts to develop the model. In-depth, phenomenological interviews were conducted to explore the participants’ experience. Data analysis and interpretation revealed three main themes from the findings: the participants’ perception of the self; experience with the external environment, and expression of need for development and growth. The main concepts deducted from the findings were “self-concept” and “enhancement” hence “A model for enhancement of self-concept of people with albinism”. Construction of theoretical relationships entailed using deductive reasoning to describe the interaction between the concepts of the model. Description of the model entailed visually portraying and describing the structure and process of the model, as well as evaluating it. Developing guidelines to operationalise the model entailed describing practical strategies to assist health professionals to enhance the self-concept of people with oculocutaneous albinism. / Health Studies / D. Litt. et Phil. (Health Studies)

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

Despite the fact that albinism affects several South Africans, it is a condition that remains deeply misunderstood. Albinism is steeped in myth and false notions, and is perceived by many as a curse and contamination. For years, persons living with albinism have been treated with doubt and suspicion. Also in schools and in the wider community, children with albinism are subjected to violence and ridicule. In certain areas on the African continent, including Southern Africa, persons living with albinism are killed for the trade in body parts for use as sacramental medicines, or sexually assaulted as a result of the belief that raping them may offer a cure for HIV/AIDS. All of this highlights the extreme vulnerability of persons living with albinism, not to mention the many violations of their fundamental rights that follow from the manner in which they are treated. Within the social context that frames the experience of persons living with albinism, the primary purpose of this study is to highlight some of the pertinent challenges faced by persons living with albinism in South Africa which compromise the full enjoyment of their fundamental rights as enshrined in the South African Constitution. The thesis makes a number of practical recommendations that will assist in promoting the legal position of this vulnerable group, while also contributing to a better understanding of albinism in general which will ultimately change negative perceptions and debunk the myths surrounding the condition. / Jurisprudence / LL. D.