Quality of Life and People with Albinism in Tanzania: More than Only A Loss of Pigment

Research Article

Open Access

Samson Kimaiyo Kiprono^1*, Lucumay Nanyori Joseph², Bernard Naafs^1,3 and Baraka Michael Chaula¹

¹Department of Dermatology, Regional Dermatology Training Center, Box 8332 Moshi, Tanzania

²Kilimanjaro Christian Medical College, Tumaini University, Box Moshi Tanzania

³Stichting Tropendermatologie, 8485 KN Munnekeburen, The Netherlands

^*Corresponding authors:

Samson Kimaiyo Kiprono
P.O. Box 8332, Moshi, Tanzania
Tel: +254 722 521 673
Email: kipsam2@yahoo.com

Received June 18, 2012; Published August 28, 2012

Citation: Kiprono SK, Joseph LN, Naafs B, ChaulaBM (2012) Quality of Life and People with Albinism in Tanzania: More than Only A Loss of Pigment. 1:283. doi:10.4172/scientificreports.283

Copyright: © 2012 Kiprono SK, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Abstract

Background: Occulocutaneous albinism type II (OCA2) is the most common type of albinism in Sub- Saharan Africa. People with albinism have poor vision and they are highly susceptible to skin cancers. The lack of understanding of the cause of albinism as led to numerous superstitions that limit their social acceptance and integration into their communities. The aim of this study was to assess the quality of life of people with albinism at the time of albino killings in Tanzania.

Methods: This was a cross-sectional study conducted in 14 Regional Dermatology Training Center outreach clinics in Northern Tanzania. Dermatology Life quality Index (DLQI) questionnaire was used to obtain DLQI scores. A semi-structured questionnaire was used to collect data on education, work, relationships and sun protection.

Results: A total of 149 people with albinism were recruited with a mean age of 32.2 years. The mean DLQI score was 13.1 (95% CI=12.4 - 13.9). Half (49.6%) of the participants were discriminated at school. A total of 138 participants were eligible for marriage, however 52.2% were still single. Albinism was reported as the reason for separation or divorce in 50% (9) of those who were separated or divorced. Discrimination during employment was reported by 46.6% (31) of those who are unemployed.

Conclusion: People with albinism have very poor quality of life. They face discrimination and challenges in integrating into the community.

Keywords

Quality of life; Albinism; Africa

Introduction

Oculocutaneous albinism comprises a group of heterogeneous pigmentary disorders with an autosomal inheritance. There are four types of oculocutaneous albinism with OCA 2 being the most common type in Africa [1]. Phenotypically, the condition present with depigmentation of the skin, the hair and the eyes due to reduced levels- or complete lack of melanin. The prevalence of albinism in Africa is estimated to range between 1 in 15,000 in the East Central state of Nigeria [2] to 1 in 1,000 among the Tonga tribe of Zimbabwe [3]. Luande et al [4] reported a prevalence of 1 in 1,400 in Tanzania. People with oculocutaneous albinism lack melanin protection and therefore, are susceptible to the harmful effects of the equatorial sun [5]. Moreover, they also face social discrimination and problems in acceptance and social integration into the black community because of their appearance [1].

Materials and Methods

This study was conducted at the Regional Dermatology Training Centre-albino outreach clinics. A total of 149 individuals with albinism were recruited at 14 outreach clinics. All individuals with albinism older than 15 years and able to assess their quality of life participated. Ethical approval was obtained from the Kilimanjaro Christian Medical College research and ethics committee and an informed written consent was obtained from all the participants. An interviewer administered questionnaire was used to collect the data. The questionnaire consisted of five sections covering the following aspects:

a) Socio-demographic characteristics: A study-specific questionnaire addressing the socio-demographic aspect.

b) Effect on education: The questionnaire consisted of five questions to assess the level of education and social problems experienced at primary- and secondary schools. The participants were asked to retrospectively assess the effect of their skin color and eyesight on their performance and discrimination they had encountered at school.

c) Effect on relationship: The questionnaire had six questions assessing the marital status, marital problems associated with albinism, developing and maintaining relationships and relationship with other family members.

d) Effect on work and employment: A total of five questions assessing the employment status and further exploring the challenges faced by albinos who are self- or formally employed in their community.

e) Dermatology Life Quality Index (DLQI) Score: Patient-based measurement of quality of life was obtained by using a validated Nigerian version of the DLQI Questionnaire [6]. This questionnaire was designed for use by adults (older than 16 years). DLQI questionnaire is short and easily understood. All the participants were requested to score their experience on the questionnaire.

Results

A total of 149 individuals participated in this study. Their mean age was 32.2 years (SD ± 11.91) with male: female ratio of 1:1.04. Siblings with albinism was reported by 86 (57.7%) of the respondents. The mean DLQL Score was 13.1(95% CI 12.4-13.9), which reflected a very high effect on their life. Detailed analysis on the effect on quality of life showed that, there was a mild effect in 3 (2.0%) respondents, whereas the effect was moderate in 45 (30.2%) respondents, high in 90 (60.4% ) respondents and very high in 11(7.4%) of the respondents.

Effect on education

The effect of albinism on education is summarized in Table 1. It can be seen that 83 (55.7%) of the respondents had primary education, 12 (8.1%) had not received any formal education. Albinism was reported by 89 (59.7%) of the respondents to have had some effect in their school performance. Effect of eye- sight on school performance was severe in 101 (67.8%) of the respondents, whereas there was no effect in only eight of the respondents. Discrimination was not experienced in school by 75 (50.3%) of the respondents.

Table 1: Education characteristics and associated factors of 149 respondents affected by albinism in Tanzania.

Effect on relationship

A total of 138 respondents were eligible for marriage as shown on Table 2. However, 72 (52.2%) were single, 39(28.3%) were married and 18(13.0%) were either separated or divorced. Twenty (51.3% of the 39 married respondents had problems with their partners because of their skin. Similarly, 9 (50%) of 18 separated or divorced respondents reported that their skin was the main reason for separation or divorce. A majority (120, 80.5%) of the respondents had no problems developing a relationship, whereas 17(11.4%) had a lot of difficulties in developing a relationship because of albinism. One hundred and twenty three (82.5%) of the 149 respondents with albinism had no problems with their family members, but 9 (6%) of the 149 respondents had severe problems. Fear of harm from other people was reported by 50 (33.6%) of the 149 respondents, although only 26(17.4%) of the 149 respondents felt that they had no adequate protection.

Table 2: effect of albinism on relationship and marriage of 149 respondents with albinism in Tanzania.

Effect on employment

A majority (128, 85.9%) were eligible for employment of which 68 (53.1%) were unemployed, whereas 51(39.8%) were self- employed and 9 (7.0%) formally employed. Thirty one (46.6%) of the 68 unemployed respondents reported discrimination for employment because of their skin. Half (30) of the employed had many challenges in their work associated with sun exposure and eyesight. Another 6 (10%) experienced discrimination at work place.

Effect of sun protective methods

Sunscreens and protective clothing were used by the people with albinism to minimize sun damage. Sunscreens had been used by 146 (98%) of the 149 respondents and protective clothing was observed in 128 (86%). Itching after using sunscreens was reported by 25 (17.1%) of the 146 respondents, whereas 21 (14.4%) were uncomfortable with their appearance after using sunscreen especially the white color. Sun protective clothing were reported to interfere with work or school by 26 (17.4%) of the 149 respondents, whereas 25 (16.8%) of the 149 respondents were uncomfortable with their protective clothing in public.

Discussion

Albinism is a genetic disorder that affects individuals psychologically. The result reported here showed that albinism had a very high effect on the quality of life of the respondents. Daily activities, performance at school and at work were affected by poor eyesight and sun exposure. The mean DLQI was higher than that reported for psoriasis and vitiligo [7]. There is more psychosocial effect of albinism on work, school and personal relationship than in those conditions, which may be life threatening.

The mean age of 32.2 years of the respondents in this study was higher than that reported in previous studies in which the life expectancy of individuals with albinism was shorter and was lower than 30 years [5,8]. An outreach skin care programs for those with albinism has been in force for more than a decade. The programs continuously offer health education, community awareness and early treatment of skin cancers. Effective programs that prevent and treat skin cancers in the rural areas may increase the life expectancy. Lund et al [9] reported that people with albinism in the rural low resource settings were highly susceptible to skin cancer and were expected to have a lower life expectancy.

Formal education presents a challenge to people with albinism. The Educational performance of majority (99.95%) was affected by poor eyesight. The prevalence of albinism in secondary and primary school children in Zimbabwe was reported to be similar [10]. However, in this study 55.7% of the respondents had received only primary education. This study included both old and young generation and most of the older people with albinism during their school age attended normal mainstream schools, which lacked special provisions for poor eyesight and with teachers who were not trained to handle such children thereby severely limiting their performance in school.

People with albinism face social problems both at school and in their community. The social problems range from name calling to being treated as an outcast [11]. Almost half of respondents in this study reported discrimination at school, which was worse among the older generation. The increased community awareness and setting- up of special schools similar to that in South Africa where the frequency of pupils in mainstream schools was lower than that in the general population since most of the affected children attend special schools [9] whereby stigma and discrimination were reduced. However, special schools for people with albinism may be counter-productive if it leads to isolation and stigmatization. Therefore, maximum efforts should be made to allow children with albinism to grow and interact with other children

The cultural beliefs and the lack of awareness on the genetic transmission of albinism make it difficult for people with albinism to establish and maintain relationships. In Tanzania [12] and Malawi [13] there are many superstitions surrounding albinism and the majority in the community fail to realize that, albinism is a genetic disorder. The albino killings and the fear of harm has an adverse effect on social interaction with strangers. In Nigeria people with albinism were found to be emotionally unstable with less assertive personalities [14] which may influence the type of friends such individuals have.

The ritual killing of individuals with albinism in Tanzania was based on beliefs that body parts of albinos can be used in ceremonies to increase material wealth. Although none of such killings occurred near the region where this study was conducted, 33.5% of people with albinism were living in constant fear of harm. The government of Tanzania publicly condemned such killings and pledged to prosecute all the individuals or groups who were involved in such ritual killings and provide adequate protection to those with albinism. Despite all the government efforts 17.4% still feel that they are not adequately protected because the killings still continue after governmental intervention, which was not reassuring for those with albinism.

The rate of unemployment in Tanzania is high and people with albinism are at a higher disadvantage. This arises from people who do not wish any physical and/or social contact with albinos. If work environment for those who are employed is non- supportive, then it limits individuals with albinism from achieving their full potential [15]. In the rural areas most people are farmers or work in informal sectors. The work is carried out in the open under direct sun for prolonged periods predisposing albinos to skin cancer. Direct bright sunlight also worsens their already poor eyesight making it difficult for them to undertake activities such as tailoring, which requires good eyesight.

Regular use of sunscreen and protective clothing is important in minimizing sun damage. However, previous studies reported that sunscreens were too expensive for regular use [1,16]. Most of the respondents in this study used sunscreens, which were provided by regular mobile clinics. However, a minority of the respondents complained of skin irritation and cosmetic appearance especially those that produced a white color. Commercially available sunscreens are too expensive to be provided for long- term use and thus unsustainable. Local production of sunscreens, which also takes into account the local environment and patient preference may be a solution. The sunscreens for use in hot and dry climates should possess properties that are water and sweat-resistant [17]. Similarly irritation because of the drying effect of ethanol or oily nature determines their preference [16]. The use of fully covering clothing with a wide brimmed hat in hot and dry environment is uncomfortable. This is worse for those working in informal sector under direct sunlight. In Tanzania, wearing of hat in rural areas or schools is not common.

Conclusion

People with albinism are faced with enormous challenges under the equatorial sun. Their quality of life is severely affected and worsened by the lack of community awareness, cultural beliefs and superstitions within the society. Poor performance in the formal education and a discriminating work environment results in an economically disadvantaged group of individuals that is engulfed in a viscous circle of isolation and poverty. Governments and communities should identify the weak areas in this circle in order to improve the quality of life of their citizens with albinism.

Acknowledgment

Dr B. Tank is thanked for correcting the English

References