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Attitudes and Beliefs of an Albino Population Toward Sun Avoidance
Advice and Services Provided by an Outreach Albino Clinic in Tanzania
Sandy R. McBride, MBBS, MRCP;
Barbara J. Leppard, DM, FRCP
Arch Dermatol. 2002;138:629-632.
ABSTRACT
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Objective To determine an albino population's expectations from an outreach albino
clinic, understanding of skin cancer risk, and attitudes toward sun protection
behavior.
Design Survey, June 1, 1997, to September 30, 1997.
Setting Outreach albino clinics in Tanzania.
Participants All albinos 13 years and older and accompanying adults of younger children
attending clinics. Unaccompanied children younger than 13 years and those
too sick to answer questions were excluded. Ninety-four questionnaires were
completed in 5 villages, with a 100% response rate.
Interventions Interview-based questionnaire with scoring system for pictures depicting
poorly sun-protected albinos.
Results The most common reasons for attending the clinic were health education
and skin examination. Thirteen respondents (14%) believed albinism was inherited;
it was more common to believe in superstitious causes of albinism than inheritance.
Seventy-three respondents (78%) believed skin cancer was preventable, and
60 (63%) believed skin cancer was related to the sun. Seventy-two subjects
(77%) thought sunscreen provided protection from the sun; 9 (10%) also applied
it at night. Reasons for not wearing sun-protective clothing included fashion,
culture, and heat. The hats provided were thought to have too soft a brim,
to shrink, and to be ridiculed. Suggestions for additional clinic services
centered on education and employment. Albinos who had read the educational
booklet had no better understanding of sun avoidance than those who had not
(P = .49).
Conclusions There was a reasonable understanding of risks of skin cancer and sun-avoidance
methods. Clinical advice was often not followed for cultural reasons. The
hats provided were unsuitable, and there was some confusion about the use
of sunscreen. A lack of understanding of the cause of albinism led to many
superstitions.
INTRODUCTION
OCULOCUTANEOUS albinism type II is an autosomal recessive condition
resulting from a mutation in the P gene encoding
for a transmembrane melanosomal transport protein. The consequent reduction
in cutaneous melanin increases the risk of nonmelanoma skin cancer.1-3 In the eye, a reduction
in pigment at the fovea leads to poor central vision, nystagmus, and photophobia.4 The overall incidence of oculocutaneous albinism type
II in Tanzania is 1 in 1400 people per year.5
In tropical countries where there is an additional risk factor of continual
daily sun exposure, many albinos die in their 20s and 30s of nonmelanoma skin
cancer.6-7
There are estimated to be 660 albinos in the Kilimanjaro region of Tanzania,
420 of whom attend a mobile outreach clinic for albinos that was started by
the Regional Dermatology Training Centre at Kilimanjaro Christian Medical
Centre in 1993.8 Clinicians visit 10 villages
in the Kilimanjaro region twice a year and provide health education, sunscreen,
hats, long-sleeved school shirts, sunglasses, and skin examinations to all
albinos who attend. At each visit, the albinos are given a hat and sunscreen
and examined for evidence of photodamage and malignant and premalignant cutaneous
tumors. They are taught how to apply sunscreen regularly and to wear sun-protective
clothing. Any skin tumors are excised in the clinic, or the patient is brought
to the medical center, where the tumor is excised within a few days. In 1996,
an educational booklet was produced, which is given to all families with albinos.
The booklet explains the basic genetics of albinism, the risks of developing
skin cancer, and methods of sun protection. Education is, therefore, in 2
forms, verbal and written.
Although clinics were well attended, the albinos were often poorly sun
protected, despite several visits to the clinic. The reason for this was not
clear and led to concern that the true needs of the albino community might
be different from those originally perceived by the clinic founders. A questionnaire
was devised to ascertain what expectations the albino population had from
the clinic, their understanding of the risk of skin cancer, and their attitudes
toward the suggested sun protection behavior.
SUBJECTS AND METHODS
A cross-sectional survey in the form of an interview-based questionnaire
was performed between June 1, 1997, and September 30, 1997, in the outreach
albino clinics in the Kilimanjaro region of Tanzania. When designing the questionnaire,
we sought the advice of the Public Health Department at Kilimanjaro Christian
Medical Centre and of local Tanzanians. The questionnaire was written in Swahili,
and to maximize continuity in interpreting answers to questions, the interviewers
remained unchanged throughout the study.
The questionnaire was tested with a group of albinos for cultural acceptability
before commencing the study. Following the pilot study, the wording of questions
that had been poorly understood was changed. The questionnaire was administered
by face-to-face interviews, thereby ensuring complete data collection, and
took approximately 20 to 30 minutes to complete. Questions were asked regarding
the respondent's understanding of the cause of albinism, the risk of skin
cancer, their expectations of the clinic, and their attitudes toward the suggested
sun protection methods. Most questions were in a multiple-choice format, with
an option to answer "don't know" and "other" where appropriate. Questions
regarding beliefs about the cause of albinism and alternative services that
the clinic might be able to provide were open ended. Understanding of sun
avoidance was further evaluated with drawings of individuals wearing various
outfits; respondents were asked to indicate which items of clothing did not
provide adequate sun protection and where, if wearing these garments, sunscreen
should be applied. A scoring system was used in which 1 point was given for
each item of clothing noted to provide inadequate sun protection and 1 point
given for indicating a relevant part of the body to which sunscreen should
be applied, eg, arms, legs, and face. A maximum score of 36 was possible.
All albinos 13 years and older and accompanying adults of younger children
attending an outreach clinic were asked to answer the questionnaire. If adults
accompanied more than 1 child, the responses to 1 questionnaire were applied
to each of the children. Unaccompanied children younger than 13 years and
those too sick to answer questions were excluded.
RESULTS
There was a 100% response rate, ie, all of those approached agreed to
answer the questionnaire, and there were no missing data. Ninety-four questionnaires
were completed in 5 villages. The median age of the albinos was 16 years (range,
4 months to 68 years); most albinos responding to the questionnaire and attending
the clinic were adults or children younger than 13 years (Figure 1). Two adults responded for more than 1 child, with one
responding for 2 children and the other for 4 children. There were approximately
equal numbers of male (49% [n = 46]) and female (51% [n = 48]) respondents.
More than half (n = 53) of those answering the questionnaire had attended
the clinic on more than 4 occasions, and only 12% (n = 11) were first-time
attendees.
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Figure 1. Age demographics of albinos responding
to the questionnaire.
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REASONS FOR ATTENDING THE CLINIC
The most common reasons given for attending the clinic were health education,
skin examination, to obtain a wide-brimmed hat and sunscreen, and concern
about the condition of the skin (Figure 2).
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Figure 2. Reasons given for attending albino
outreach clinics. Respondents were permitted to give more than 1 answer to
this question.
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SUPERSTITIONS AND THE CAUSE OF ALBINISM
Although 59 (63%) respondents had an albino relative, only 13 (14%)
believed albinism to be an inherited condition. More common were beliefs in
numerous local superstitions explaining the cause of albinism. Most of these
concerned a curse being put on the family or the mother eating with an albino
or shaking hands with an albino. These activities were perceived as most sinister
if performed in the morning. Many thought it was "God's will" that they, or
their child, were albino.
RISK OF SKIN CANCER
Among the 47 (50%) albinos who claimed to have read the educational
booklet, 73 (78%) thought that skin cancer was preventable, and 59 (63%) believed
that cancers were related to the sun and could be prevented by sun-avoidance
behavior.
SUNSCREEN
All albinos attending the clinic are provided with a sunscreen. Seventy-two
(77%) believed it was to protect the skin from the sun, but it was also thought
to have numerous other qualities, such as making the skin soft and preventing
injury. Ninety (96%) reported using the sunscreen at least once a day, but
9 (10%) also applied it at night.
SUN-PROTECTIVE CLOTHING
The most common reasons given for not wearing sun-protective clothing
were that it is unfashionable (34% [n = 32]), too hot (13% [n = 12]), and
not available (10% [n = 9]). The hats provided in the clinic, although "liked"
by 92 (98%) respondents, were thought to have too soft a brim, to shrink,
to be unfashionable, and to be ridiculed by others.
SUGGESTIONS FOR THE CLINIC
Suggestions from respondents about additional services that they would
like the clinic to provide were mainly about education and employment. They
included a boarding school for albino children or for the visually impaired,
a place for albinos to study at the Regional Dermatology Training Centre,
and assistance with finding employment and developing income-generating projects.
ANALYSIS OF DRAWINGS
The maximum score for indicating items of clothing not providing adequate
sun protection and the number of body sites to which sunscreen should be applied
in the drawings was 36 points. Scores ranged from 6 to 35 (mean [SEM], 24
[0.7]; 95% confidence interval, 22.2-25.1). The mean score for those who had
read the educational booklet was 23.2 (95% confidence interval, 21.3-25.1),
and the mean score for those who had not read the booklet was 24.2 (95% confidence
interval, 21.9-26.5) (P = .49, unpaired t test) (GraphPad Prism 2.01; GraphPad Software, Inc, San Diego, Calif).
COMMENT
The aim of this study was to gain insight into the beliefs and attitudes
of an albino community toward health education and services provided by a
dedicated clinic, with a view to adapting the services to better meet the
needs of the community. There are cultural difficulties in performing a study
of this kind, which we attempted to minimize by seeking advice from local
Tanzanians when writing the questionnaire and testing the study.
The young median age of attendees at the clinic (16 years) may be the
result of many factors, including the youthful population of Tanzania (47%
of the population are younger than 14 years, and only 3% are older than 65
years), the tendency of the older population to seek their health care from
traditional medical sources,9 early death from
nonmelanoma skin cancer,6 and the practice,
until approximately 45 years ago, of killing albino newborns at birth. Teenagers
are underrepresented in this survey, possibly because of pressures to attend
school rather than the clinic or because of poor attitudes and behavior toward
sun protection in this age group, which would be in keeping with survey results
in Western cultures.10-11 We are
reluctant to draw comparisons between results of our study and those of studies
based on Western white populations because of cultural differences in our
group, which forms a subsection of the predominantly black population of Tanzania,
and the absence of tanning ability in the albino population. This study does,
however, suggest that albino teenagers may be a group to target for sun-avoidance
education and further studies. The high response rate is indicative of the
willingness of the albino community to participate in studies such as this,
or it may reflect a general wish to please the clinic organizers.
The reasons given for attending the clinics were similar to those perceived
by the clinic founders,8 ie, health education,
skin examination, and treatment of cutaneous tumors, but did not explain the
respondents' poor compliance with sun protection behavior. A good understanding
of the risk of skin cancer and of sun protection behavior was demonstrated
by the questionnaire results and was verified by scores on sunscreen application
and clothing anomaly assessment. Health education covering this information
had been given verbally by the clinic staff and in the educational booklet.
There was no difference in the scores between those who claimed they had read
the booklet and those who had not, implying that the booklet, in its present
form, may have limited educational benefit, although we had no method of verifying
that the booklet had been read. In support of this, there was little understanding
of the cause of albinism, information mainly covered in the educational booklet
and not covered in the verbal health education. This gulf in knowledge was
bridged by numerous superstitions. These superstitions conveyed negative connotations,
such as a curse having been put on the family, misbehavior of the mother,
or derogatory name-calling such as zeru zeru (ghost), mzungu (white person), and "pig." This has highlighted
the need for educating not only the albino population but also the wider community
about the etiology of albinism.
The group's understanding of the use of sunscreen was reasonable, but
there was some confusion about its purpose. This may be in part because the
sunscreen is made using a moisturizing base that is in popular use to soften
and provide sheen to the skin. The sunscreen is distributed in the original
moisturizer bottle but with an affixed label in Swahili giving directions
for use. The clinic has recently received a donation of commercial sunscreen,
which may cause less confusion.
Some reasons for noncompliance with suggested sun protection methods
were elucidated. It is not fashionable to wear a large hat, long sleeves,
and socks. It is not practical to wear this clothing in equatorial sunshine
when doing manual labor. The hats given out in the clinic were impractical,
with large floppy brims obscuring vision, and were ridiculed. Politeness may
have motivated almost everyone to say they liked them, however.
Suggestions for additional services to be provided by the clinic related
to education and employment. The educational needs of albino children are
not being met by the state school system. A letter is sent to head teachers
explaining the problems of albinism and requesting permission for albino children
to wear long sleeves, long trousers or skirts, and hats when outside. Unlike
other African countries,12 there are no provisions
for children with poor vision, such as reading glasses, magnifying glasses,
and large-print books. Adult albinos are, as a consequence, often poorly educated
and have few employment options other than farming, which exposes them to
almost constant sun exposure.
Education of teachers and inclusion of the educational needs of albino
children in the teacher training curriculum in Tanzania may eliminate the
need for separate educational institutions, thus reducing segregation of this
stigmatized community. This would need to be assessed and provided for on
a national scale.
CONCLUSIONS
Albinos attending the clinic had a reasonable understanding of the risks
of skin cancer and of sun-avoidance methods. They did not always follow the
advice given in the clinic, however, because of cultural or fashion reasons,
heat, or lack of availability of suitable clothing. There were no difficulties
with the application of sunscreen in terms of acceptability, but there was
some confusion about its exact purpose. The lack of understanding of the cause
of albinism seemed to perpetuate numerous abusive superstitions surrounding
the albino community.
Since this study was performed, some changes have been instituted. The
emphasis of health education in the clinic has been changed. Verbal education
now includes the etiology of albinism. Sun-protective clothing is the preferred
method of sun avoidance, but the importance of applying sunscreen to any exposed
body parts in the absence of ideal clothing is stressed. This will have implications
for provision of adequate volumes of sunscreen.
It is beyond the scope of the clinic and the Regional Dermatology Training
Centre to provide jobs for a significant number of the albino community. However,
thanks to a donation of sewing machines from a local company, albino women
now make and supply the clinic hats. The new hats have a stiff brim and are
in various colors, making them more practical and less stigmatizing. Two of
the local albino coordinators have recently started a series of 5-minute programs
on local radio, with the aim of educating the wider community. If this is
successful at a local level, national media sources may be targeted in the
future.
AUTHOR INFORMATION
Accepted for publication July 6, 2001.
We are grateful to Mark Mason for entering and translating much of the
data, Sister Elizabeth Urio and Luteresia Mangowi for interviewing the albinos,
and the local albino coordinators and the albinos themselves for their willingness
to help. The British Association of Dermatologists, London, England, supported
Dr McBride during her time in Tanzania and continues to support Dr Leppard.
This study was presented at the annual conference of the British Association
of Dermatologists, Brighton, England, July 1998.
Corresponding author and reprints: Sandy R. McBride, MBBS, MRCP,
Department of Dermatology, Royal Free Hospital, Pond Street, London NW3 2QG,
England (e-mail: sandymcbride{at}hotmail.com).
From the Regional Dermatology Training Centre, Kilimanjaro Christian
Medical Centre, Moshi, Tanzania. Dr McBride is now with the Department of
Dermatology, Royal Free Hospital, London, England.
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