DEVELOPMENT OF A MODEL FOR ENHANCEMENT OF SELF-CONCEPT OF PEOPLE WITH ALBINISM

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CHAPTER 3 RESEARCH FINDINGS AND LITERATURE CONTROL

INTRODUCTION

This chapter focuses on the research findings, and constantly compares the findings with those of previous studies. The findings are presented in a narrative form, and the participants’ responses are quoted verbatim to support the findings.
Three main themes were identified during data analysis, namely perception of the self, experience with the external environment, and expression of need for development and growth of people with oculocutaneous albinism. These themes captured the emic views of the people with oculocutaneous albinism experiencing the phenomenon. In this regard, LoBiondo-Wood and Haber (2002:166) describe a theme as a label that describes data in a condensed format, to help the reader understand the emic view.
During data analysis the researcher identified the need to reflect the categories of the main themes within the dimension of Neuman’s systems model, namely psychological, physiological, socio-cultural, spiritual, and developmental dimensions (Neuman 1995:15). Most importantly, the researcher entered the field without a preset theory of reference by using bracketing and intuiting reasoning strategies (see chapter 2).
In the next section, the researcher describes the sample to contextualise the findings within the biographical characteristics of the participants.

SAMPLE DESCRIPTION

The sample consisted of fifteen people with oculocutaneous albinism from urban and semi-urban areas in the Gauteng Province, South Africa. This section describes the demographic profile and the family history of the sample. Table 3.1 depicts the characteristics of the participants.

Demographic profile

The participants’ demographic profile included gender, age, ethnic group, level of education, employment status, marital status, religious affiliation, sports/extramural activities, and residential area.

Gender distribution

Data was collected from fifteen participants, twelve females and three males, with oculocutaneous albinism. A random purposive sample was selected from a list of potential participants provided by the Albinism Society of South Africa. The list comprised more females (54%) than males (46%), hence there were more females in the sample. Nevertheless, the majority of females in this study was of significance according to studies on oculocutaneous albinism in the late 1980s. These studies raise concern that females with oculocutaneous albinism are in a particularly vulnerable position to be stigmatised and exploited in relationships, and thus seek help from support groups. Ezeilo (1989:1130) and Lonsdale (1990:24) maintain that, as a result of curiosity, women with oculocutaneous albinism may be sexually exploited rather than treated affectionately, and this in turn, may limit their quality of life and self-image.
To support Ezeilo (1989:1130) and Lonsdale (1990:24), one of the married female participants in the present study expressed her concern as follows:
You know sometimes I wonder whether the men who propose love to us really love us, or he’s trying to get something from you. But I think sometimes its psychological, but there has been such remarks…
In a study in Soweto, South Africa, in the early 1980s, however, Kromberg and Jenkins (1982:386) found more males (113) than females (93). Kromberg and Jenkins (1982:386) cite Froggart (1962) in Northern Ireland, who states that the sex difference of people with albinism was social, and males with albinism tend to come forward to be counted more readily than females.
At the same time, Kromberg and Jenkins (1982:386) also refer to Oettle’s (1973) finding in Transkei, South Africa, of more females than males.
Kromberg and Jenkins (1982:386) then suggest that the sex ratio may be explained by the nature of the populations in which the studies were carried out.

Age distribution

The participants’ ages ranged between 18 and 48 years, with a mean age of 33 years. The majority of the participants were between 25 and 35 years, while one was 18 and one was 48 years old.
Luand, Puri, Durham-Pierre, King and Brilliant (1997:734) indicate that as result of skin cancer, oculocutaneous albinism is associated with early death. According to Luand et al (1997:734), early death was especially noted in African countries closer to the equator like Tanzania and Nigeria, where only 10% of persons with oculocutaneous albinism survive beyond 30 years of age. Okoro (1975:475) found that among 517 people with albinism in the East Central State of Nigeria, 89% were aged 0-30 years while 10% were aged 31 to 60 years.

Ethnic group

Most of the participants were Tswana and Zulu speaking, each representing four participants respectively, followed by three who were Xhosa speaking. A minority of the participants were Southern Sotho, Ndebele, Venda and Coloured, each respectively represented by one participant. It is considered that the values and beliefs in a specific ethnic group could have influence on the experience of the people with oculocutaneous albinism, although no evidence of this was available in the literature.
Kromberg and Jenkins (1982:384) found the highest prevalence of oculocutaneous albinism in the Southern Sotho, followed by the Swazi and then the Tswana. The consanguinity rate of parents in the Tswana and Southern Sotho people accounted for the high prevalence rate in Kromberg and Jenkin’s (1982:384) study. In this study, however, the prevalence of more Zulu people with oculocutaneous albinism may be attributed to the prevalent ethnic group in that geographical area.

Educational standard

The question on the level of education was asked to determine whether the level of education could influence the participants’ life-experience of oculocutaneous albinism.
Table 3.1 shows that out of the fifteen participants, fourteen attended school to Grade 12 and matriculated. Only one, the youngest participant, was still attending school (in Grade 11 [Std 9]). The majority of the participants also had post-school qualifications including degrees, diplomas and certificates. Only one participant passed Grade 12 and had not been able to further her studies.
Three participants were presently enrolled for postgraduate studies and registered for a Bachelor of Arts degree, Diploma in Management and Diploma in Human Resources, respectively. It emerged that the level of education of the participants influenced their life-experience as presented in the contextual discussion of the main themes.

Employment status

It was essential to determine the participants’ employment status to determine how this could influence their everyday life-experience of oculocutaneous albinism.
It is evident from Table 3.1 that almost half of the participants were employed. Of the fifteen participants, eight were employed, two of them on a contract basis; three were on management and business administration programmes, and three were not employed nor on any learnership programmes. Only the youngest participant was still attending school. During the interviews the participants indicated how their employment status influenced their life-experience, especially with regard to their self-esteem.

Marital status

The purpose of asking this question was to determine how marital status could influence the life-experience of people with oculocutaneous albinism.
Of the fifteen participants, thirteen were single and only two were married. The partners of both married participants did not have oculocutaneous albinism.
Of the thirteen single participants, three did not have partners (boyfriend or girlfriend). Of these, two had previously had relationships, and one had never been in a formal relationship. Ten of the thirteen single participants had partners, one of whom had a live-in partner. Of the ten single participants with partners, two of the partners also have oculocutaneous albinism, and eight do not.
Nevertheless, in line with the above description of the participants’ marital status, the findings of Kromberg (1992:164) reveal that there was a positive attitude towards pigmented people marrying a person with oculocutaneous albinism, but a slightly less positive attitude towards allowing one’s own child to marry a person with oculocutaneous albinism. Kromberg (1992:164) also noted that people with oculocutaneous albinism themselves were found to be slightly, but not significantly, less in favour of allowing their children to marry a person with oculocutaneous albinism.

Religious affiliation and church attendance

The question wished to identify the denominations to which the participants were affiliated, for the purpose of determining how the norms and belief in the churches could influence the life-experience of persons with oculocutaneous albinism (see table 3.1).
Of fifteen the participants, fourteen had a strong religious background and were affiliated to a particular religious group, whilst only one did not belong to any particular religious denomination. Those fourteen participants were affiliated to various churches: Anglican, Methodist, Lutheran, Apostolic and Islam, Dutch Reformed, Grace Bible and Zion Apostolic.
In South Africa individuals have a constitutional right to affiliate to any church of their choice (South Africa 1996:8). Raliphada-Mulaudzi (1997:46) is of the opinion that different churches have different norms and values, which may influence the attitude of the community on various issues.
During the interviews significance of the participants’ strong religious background emerged clearly as they related their life-experience.

Sports/Extramural activities

This question was asked to determine the participants’ social activity. The majority of the participants did not engage in any form of sports or extramural activities. Of the fifteen participants, only six engaged in some form of sports or extramural activity, including aerobics, snooker, music, and home exercises using videos. One of the active confident participants indicated that she used to be a part-time model, and was once a coach for under 16 netball players. Nine of the participants who were not engaged in any extramural or sports activities cited time constraints as a major barrier. The significance of this characteristic is described in detail in the contextual discussion of the main themes of the study.

Residential area

This section highlights the home area of the participants. Of the fifteen participants, thirteen were from semi-urban and two from urban areas (see table 3.1).
The residential area is of significance as the study participants shared their experience in view of beliefs, values and practices on oculocutaneous albinism from different areas. Jordaan and Jordaan (1998:799) maintain that beliefs in society affect the people’s attitude to life, life styles and behaviour in an ethical and social context.

Family history

The participants’ family history determined the family setting, number in the family, sibling rank, as well as other family members with oculocutaneous albinism. Table 3.2 indicates the participants’ family history.

CHAPTER 1 INTRODUCTION AND OUTLINE OF THESIS
1.1 INTRODUCTION
1.2 STATEMENT OF THE RESEARCH PROBLEM
1.3 PURPOSE OF THE STUDY
1.4 RESEARCH OBJECTIVES
1.5 BACKGROUND TO THE PROBLEM
1.6 PARADIGMATIC PERSPECTIVE OF THE RESEARCH
1.7 RESEARCH DESIGN AND METHODOLOGY
1.8 REASONING STRATEGIES
1.9 ETHICAL REQUIREMENTS
1.10 TRUSTWORTHINESS OF THE STUDY
1.11 USE OF LITERATURE IN THIS STUDY
1.12 LIMITATIONS AND RECOMMENDATIONS
1.13 OUTLINE OF THE STUDY
1.14 CONCLUSION
CHAPTER 2 RESEARCH DESIGN AND METHODOLOGY
2.1 INTRODUCTION
2.2 PURPOSE OF THE STUDY
2.3 OBJECTIVES OF THE STUDY
2.4 RESEARCH DESIGN
2.5 RESEARCH METHODOLOGY
2.6 REASONING STRATEGIES
2.7 ETHICAL RIGOR
2.8 MEASURES FOR ENSURING TRUSTWORTHINESS
2.9 CONCLUSION
CHAPTER 3 RESEARCH FINDINGS AND LITERATURE CONTROL
3.1 INTRODUCTION
3.2 SAMPLE DESCRIPTION
3.3 CONTEXTUAL DISCUSSION OF THE MAIN THEMES
3.4 RESEARCHER’S EXPERIENCE OF THE FIELDWORK
3.5 CONCLUSION
CHAPTER 4 DEVELOPMENT OF A MODEL FOR ENHANCEMENT OF SELF-CONCEPT OF PEOPLE WITH ALBINISM
4.1 INTRODUCTION
4.2 CONCEPT ANALYSIS
4.3 THEORETICAL DEFINITION OF ENHANCEMENT OF SELF-CONCEPT
4.4 CLASSIFICATION OF THE MAIN CONCEPTS
4.5 PROCESS OF ENHANCEMENT OF SELF-CONCEPT
4.6 CONCLUSION
CHAPTER 5 DESCRIPTION OF A MODEL FOR ENHANCEMENT OF SELF-CONCEPT OF PEOPLE WITH ALBINISM AND GUIDELINES FOR OPERATIONALISATION OF THE MODEL
5.1 INTRODUCTION
5.2 OVERVIEW OF THE MODEL
5.3 GUIDELINES FOR OPERATIONALISATION OF THE MODEL
5.4 ANALYSIS AND EVALUATION OF THE MODEL
5.5 CONCLUSION
CHAPTER 6 CONCLUSIONS, LIMITATIONS AND RECOMMENDATIONS
6.1 INTRODUCTION
6.2 CONCLUSIONS
6.3 LIMITATIONS OF THE STUDY
6.4 RECOMMENDATIONS
6.5 THE RESEARCHER’S EXPERIENCE
6.6 CONCLUSION
BIBLIOGRAPHY
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A MODEL FOR ENHANCEMENT OF SELF-CONCEPT OF PEOPLE WITH ALBINISM

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