The experience of albinism in France: a qualitative study on dyads of parents and their adult child with albinism.

BACKGROUND: To date, almost no research on the psychosocial implications of albinism has been conducted in France and an exploration of albinism-related experiences could be beneficial, in order to better understand this condition. The aim of this study was to examine how French people with albinism and their parents live with and adapt to this condition in all the areas of their lives. METHODS: Semi-structured phone interviews were conducted with 9 parent-child dyads, each participating separately. Participants were recruited by convenience sampling, thanks to the combined efforts of a patient association (Genespoir) and professionals from the partner medical referral centers involved in the project. Dyads in which the individual with albinism had any comorbidity were excluded. The interviews were then transcribed and subjected to in-depth thematic analysis. Two codebooks were constructed in a mirrored process: one for people with albinism; the other for their parents. They were finally merged at the end of the coding step. RESULTS: Four main categories were identified: personal perceptions and social representations of albinism, difficulties and obstacles encountered by people with albinism, resources and facilitators, and the importance of parent-child functioning. The results indicated that experiences of stigmatization during childhood and adolescence are common and that people with albinism face challenges in adapting to certain obstacles related to their visual impairments (VI) (e.g., inability to drive a car; eye strain...). Parents emerged as one, if not as the main, source of support for people with albinism throughout their development. Although external support systems exist to assist them in various aspects of their lives, some of them primarily rely on their own personal resources to cope. CONCLUSIONS: This research highlights the importance of a systemic and transdisciplinary approach to make sure families receive the support that best meets their needs.

Albinism, stigma, subjectivity and global-local discourses in Tanzania.

Societal ideas and explanations of albinism at the local level in Tanzania are conceived in terms of family history, social relations, economic status, moral-religious positions, global-local flows of information and humanitarian actions on behalf of people with the congenital condition. This paper aims to show how the subjectivities of people with albinism in Tanzania are shaped and re-shaped through local moral conceptions as well as globalizing (bio)medical explanations of albinism. An exemplary case study of a 28-year-old woman, plus episodes from the lives of seven other informants with the condition, are analyzed in order to understand, on the one hand, local social relationships between people with albinism and other individuals in family and community settings, and on the other hand, the interconnections between persons with albinism and global humanitarian actors and the broadcast media. When stigma and marginalizing behaviors are perceived by individuals with albinism in Tanzania as impeding their social lives, they employ different coping strategies and discourses to enhance social acceptance.

Quantification and comparison of psychiatric distress in African patients with albinism and vitiligo: a 5-year prospective study.

BACKGROUND: Vitiligo and albinism are two disorders of pigmentation that make the affected African highly visible and strikingly different from their peers. Both pose considerable management challenges, attract significant stigma and profound impairment of quality of life. OBJECTIVE AND METHODS: To determine and compare psychiatric distress in vitiligo and albinism using the Hospital Anxiety and Depression Scale (HADS). Participants were 87 albinos and 102 vitiligo adult patients seen at an urban tertiary hospital in Nigeria between 2004 and 2009. RESULTS: Prevalence of psycho morbidity was 59% (60/102) in vitiligo compared with 26% (23/87) in the albinos. The mean anxiety score was estimated to be 2.55 points lower for albino patients (95% CI: 1.47 to 3.64), and the mean depression score 2.76 points lower (95% CI: 1.84 to 3.68), after adjustment for age, sex and marital status. However, significant differences were not observed when comparing the vitiligo patients with the subset of albino patients with skin cancer. Older patients had significantly higher anxiety and depression scores. Females had significantly higher anxiety scores (but not depression scores) compared to males. Genital involvement in vitiligo was significantly associated with anxiety but not depression. CONCLUSIONS: We found that the African with vitiligo suffers significantly higher psychiatric distress than the African albino on average. Clinical evaluation of these patients would be incomplete without assessment of their psycho morbidity. There is need for increased focus on cancer prevention strategies in the African albino.

Use of a driving simulator to assess performance under adverse weather conditions in adults with albinism.

Participants with albinism have reduced vision and nystagmus with reduced foveation times. This prospective study evaluated driving in 12 participants with albinism and 12 matched controls. Participants drove a vehicle simulator through a virtual rural course in sunny and foggy conditions. Under sunny conditions, participants with albinism showed a narrower preferred minimum safety boundary during car-following tasks than did controls, but there was no difference under foggy conditions. Their driving did not differ significantly from that of controls when approaching a stop sign or when choosing gap size between oncoming vehicles when crossing an intersection. However, when compared to control drivers, participants with albinism had a decreased minimum safety boundary for car-following that should be included in counseling regarding driving safety.

Evaluation of vision-specific quality-of-life in albinism.

INTRODUCTION: Human albinism is a genetic condition associated with visual impairment that affects many aspects of daily life. Office measurements of visual acuity do not necessarily reflect daily visual function and health status. This study used the National Eye Institute Visual Function Questionnaire (NEI-VFQ) to determine the effect of albinism-associated ophthalmopathy on quality of life (QOL). METHODS: We administered the NEI-VFQ, which consists of 25 questions about QOL (VFQ-25) and 14 questions about well-being (VFQ-39), to 44 consenting participants with albinism older than the age of 18 years. RESULTS: Nineteen male and 25 female subjects completed the study. Median age was 30.5 years (range, 18-79 years). Mean best-corrected visual acuity was 20/83 (range, 20/20 to 20/320). Forty-eight percent reported that they were currently able to drive with their condition. Participants perceived midscale problems with their general vision (median subscale score 60.0). Visual acuity correlated moderately with overall NEI-VFQ composite scores (r(s) = 0.40, p = 0.01 for VFQ-25 and r(s) = 0.36, p = 0.02 for VFQ-39). Most notable impairment was recorded for distance acuity, vision-specific mental health, and vision-specific role difficulties (VFQ-39 median subscale scores 66.7, 70.0, and 75.0, respectively). Differences by sex were insignificant. Greater ceiling effects were noted for the VFQ-25 than for the VFQ-39. CONCLUSIONS: The NEI-VFQ-39 is a method to evaluate self-reported effects of vision-related QOL in albinism and may be used as a baseline for evaluating outcomes in interventional studies in these patients.

The prevalence of attention-deficit/hyperactivity disorder among persons with albinism.

Attention-deficit/hyperactivity disorder (ADHD) is a common diagnosis in children and adults. Human albinism is an uncommon genetic condition associated with visual impairment that may affect behavior. To determine if there is a relationship between albinism and ADHD, the prevalence of ADHD was examined among 78 children (age range, 4-18 years) and among 44 adults (age range, 19-79 years) with ocular or oculocutaneous albinism. ADHD was diagnosed in the pediatric population using a combination of Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition) criteria, Conners' Parent Rating Scale, and physician observation. Adults were diagnosed using the Utah criteria for ADHD as confirmed by physician history and interview. Seventeen children (22.7% [17 of 75]) (3 children with existing diagnoses of pervasive developmental disorder were identified but were not included in the data analysis) and 3 adults (6.8%) met the criteria for ADHD. The combined hyperactivity and impulsivity subtype of ADHD was most common, accounting for 50% of the diagnoses. Binocular best-corrected visual acuity and genetic type of albinism were not found to correlate with a diagnosis of ADHD. The prevalence of ADHD among children and adults with albinism is more frequent than that reported among the general population and is not related to binocular best-corrected visual acuity.

Beliefs and practices concerning twins, hermaphrodites, and albinos among the Bamana and Maninka of Mali.

The Bamana and Maninka of Mali greatly value twins, and have elaborated a range of cultural beliefs and practices to assure their survival. Rates of twinning among these two ethnic groups average from 15.2/1000 to 17.9/1000 births compared to 10.5/1000 births (without assisted reproduction) in the United States and Great Britain. Twins (flaniw) are regarded as extraordinary beings with unusual powers, and as a gift from the supreme deity. A small altar (sinzin) is maintained in the home of twins, and periodic sacrifices of chicken blood, kola nuts, millet paste and millet beer regularly made to assure their protection. Albinos (yéfeguéw) and true and pseudo-hermaphrodites (tyéténousotéw) are also considered twin beings. However, they are believed to be the result of aberrant parental social behavior. The Bamana and Maninka believe that all four groups (twins, albinos, hermaphrodites, and pseudo-harmaphrodites) are closely linked to Faro, an androgynous supernatural being who provides equilibrium in the world. Faro is the original albino and hermaphrodite who gave birth to the first pair of twins after self-impregnation. Whenever a twin dies, a small wooden statue is sculpted called a flanitokélé (twin that remains). This commemorative figure is kept close to the surviving twin, reflecting a belief in the inseparability of twins. Eventually, the surviving twin takes responsibility for the figure. When a surviving twin marries, another figure is often sculpted in the opposite sex from the deceased twin, and placed with the original sculpture. Such commemorative sculptures are not created upon the death of those who are albinos, hermaphrodites, or pseudo-hermaphrodites. In recent years, transformational belief patterns have evolved as increasing numbers of Bamana and Maninka embrace Islam. Traditional beliefs are often given Islamic myths of origin. However, even in this Islamic context, many practices that assure twin survival are maintained.

A health intervention programme for children with albinism at a special school in South Africa.

The genetic condition albinism has a high frequency among the Sotho people of northern South Africa. Affected children have pale hair, eyes and skin-a dramatic contrast to the normal dark pigmentation. Their visual performance is poor and many attend special schools for the visually impaired. Children with albinism experience problems that are, on the one hand, physiological, and, on the other, social-psychological and educational in nature. In this self-report study 38 children at a rural special school described their eye and skin problems, a direct result of their lack of pigmentation, as well as strategies they adopted to manage their condition. A further section of the study deals with the social adaptation difficulties experienced by these children. The questionnaire tested for local belief systems about albinism and how these impact on the socialization of children with albinism. The intervention strategy proposed in this study is based on the assumption that any attempt to address both the health and social problems should be of a holistic, interactionist nature, and be based on the values and belief systems of the local community. In addressing the physical problems, the proposed intervention programme focuses on sensible sun protection habits from a young age and the active participation of the children. To alleviate the social problems a team (interactionist) approach including children, teachers, parents, health officials and the wider community is recommended.

Health and education of children with albinism in Zimbabwe.

Albinism is a relatively common genetic condition in Zimbabwe, a tropical country in southern Africa. Those affected have little pigment in their hair, skin or eyes, in sharp contrast to the normal dark pigmentation. This article describes the responses to a self-report questionnaire covering health, social and educational aspects completed by 138 schoolchildren with albinism living in rural areas of Zimbabwe. They reported persistent skin and a myriad of eye problems. Relationships between siblings appeared good, although problems of antagonism, avoidance and fear were encountered among strangers. Knowledge about albinism was patchy; pupils were keen to be better informed. This research highlights the need for widespread dissemination of accurate information about the genetics and health management of albinism to counter the many myths and misconceptions surrounding this condition. A management programme to promote the health and education of these children in southern Africa is proposed. In conclusion, this study indicated that pupils with albinism could participate in mainstream education, with appropriate intervention to help them manage the problems associated with their low vision and sensitive skins.

Illumination has no effect on rats' behavior in the elevated plus-maze.

Male Wistar rats Shoe:Wist(Shoe) were tested in the elevated plus-maze under three different illumination levels (30, 300, and 900 lx). It was found that illumination did not change percentage of time spent in closed arms, number of closed arm entries, or time spent on open arms, or total arm entry. This confirms earlier findings that rat's behavior in the elevated plus-maze is independent of light levels.

A psychosocial study of albinism in a predominantly Mulatto Caribbean community.

Psychosocial data collected from 12 albinos in rural and isolated parts of the Dominican Republic suggest a stigma is associated with the absence of skin color. The general population living in the area has a skin pigmentation of dark brown. The purpose of the investigation was to assess whether there were psychosocial problems for albinos with white skin and hair. Prior studies imply albinism is a negative social characteristic associated with prejudice and apartheid in a predominantly mulatto community. This researcher recommends that psychologists and health-care providers be familiar with similar sensitive issues among special populations.

Heritability of dark pulse triggering of paradoxical sleep in rats.

A previous study showed that albino Lewis (L) rats could be triggered into paradoxical sleep (PS) by dark pulse stimulation, i.e., turning off cage lights, whereas brown Norway (BN) rats showed no evidence of PS triggering by dark pulses (2). The transmission of the PS triggering behavior was studied in L x [L x BN]F1 hybrid backcross (BC) animals. Albino BC rats increased PS% during 5-minute dark pulses to three times the average PS% for the preceding 5 minutes of lights-on. In contrast, no significant PS triggering was observed in pigmented BC rats. These data support the hypothesis that PS triggering by dark pulse stimulation is related to albinism in these rat strains. The absence of a connection between PS triggering and total daily amounts of PS suggests independent genetic transmission of these two parameters.