Professional Documents
Culture Documents
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Cora Butler-Jones
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A Dissertation Submitted to the Faculty of
The Chicago School of Professional Psychology
In Partial Fulfillment of the Requirements
For the Degree of Doctor of Philosophy, International Psychology
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August 8, 2013
UMI Number: 3599490
In the unlikely event that the author did not send a complete manuscript
and there are missing pages, these will be noted. Also, if material had to be removed,
a note will indicate the deletion.
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UMI 3599490
Published by ProQuest LLC (2013). Copyright in the Dissertation held by the Author.
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Microform Edition © ProQuest LLC.
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Unpublished Work
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Copyright (2013) by Cora Butler-Jones
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The Impact of Resilience on Help-Seeking Behavior
Among People With Albinism in Tanzania
Cora Butler-Jones
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2013
Approved By:
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Joan Cooper, PhD, Chairperson
Associate Professor, The Chicago School of Professional Psychology
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Acknowledgments
Over years of learning, my family and friends have always encouraged me. They
waited for me to type papers, watched me become stressed over exams, cheered me up or
on when I felt defeated by timelines and travel, and prayed for me through the losses I
have endured along the way. At the end of the day, they helped me to become a whole
person through the completion of this very final phase in my educational process. I thank
my sister Jeannie Budd, who has since passed away and did not live to see this day. She
believed in me more than anyone else, and I regret she is not here to see me complete
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what she helped me to start. I also thank my sister Janelle Butler-Phifer and my brother
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John Butler for their help and encouragement. I thank Dr. Dominic Idoko, who helped me
to select the program, comforted, encouraged, and assisted me, and helped with the
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travel, data collection, and all other aspects of the study. He also advised me of important
approvals I needed to conduct research in Africa, and most of all was patient with my
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progress. The UMass Emergency Mental Health Team, including the crisis workers, the
nurses and doctors, the supervisors, and medical director, were all very patient with me
while I worked on this project. They also wrote letters of support, supported my
fundraiser for the children with Albinism I met while in Tanzania, and continued to
employ me throughout this important project. I owe them a large debt of gratitude, as I do
Under the Same Sun (UTSS), the nongovernmental organization that sponsored me.
Executive Director Vicky Ntetema and her staff provided valuable guidance on seeking
and receiving government approvals from the National Institute for Medical Research
(NIMR) and a permit from the Tanzania Commission for Science and Technology
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(COSTECH) to conduct research in Tanzania. I give special thanks to Josephat Edward
Ingembe, External Relations Coordinator for UTSS, for providing interpreter services and
for travelling to the Lake Zone Region so I could conduct this research, putting himself
(as a person with Albinism) at risk. The Tanzania Albino Society played an important
role in helping to find subjects, which I thank them for. I also acknowledge my local
Education, and Dean, Faculty of Psychology and Education, for his generous response to
my requests to him to support my research, his immediate actions, and his never-ending
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understanding the importance of research on sensitive topics. Special thanks go to Joyce
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K. B. Ikingura, Senior Research Scientist, Health Research Ethics Development, NIMR,
they clearly communicated their requirements, and I appreciate their high standards. I
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program staff and Dr. Joan Cooper, my committee chairperson, who went above and
beyond in her support of me. I also thank my readers, Dr. Viviane de Castro Pecanha and
Dr. Vlada Broman, who were patient with my errors and provided me with valuable
insight for writing a good dissertation. I thank my advisor, Sara Avadarian; Alicia Cook,
Institutional Review Board; Nikki Seifert, PhD in linguistics and American Psychological
Association editor, who provided valuable feedback on the quality of the dissertation; and
all the faculty who had faith in me that I could accomplish this complex task.
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Abstract
Cora Butler-Jones
This research studied how people with Albinism in Tanzania view Albinism and
resilience can positively impact the rate of death from skin cancer in this population. This
case study research is based on a literature review, observations, and data collected from
25 women. Data were collected through interviews, using the Davidson Trauma Scale
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(Davidson, 2002), Wagnild Resilience Scale (Wagnild, 2009), and a questionnaire I
created for this study. Findings include that resilience resulting from education and
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community support (a) leads to an improved condition, (b) leads to improved behavior in
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seeking needed medical help, and (c) is an asset to survival. Recommendations for the
community include helping people with Albinism feel a sense of belonging and
continuing the work of agencies in the community that mobilize, educate, and empower
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Table of Contents
Copyright………………………………………………………………………………….ii
Signature Page……………………………………………………………………………iii
Acknowledgements……………………………………………………………………….iv
Abstract…………………………………………………………………………………...vi
List of Tables…………………………………………………………………………….xii
List of Figures..……...………………………………………………………………......xiii
Dedication…………………………………………………………………………...…..xiv
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Background ..................................................................................................................... 1
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Problem Statement ........................................................................................................ 14
Summary ....................................................................................................................... 32
Introduction ................................................................................................................... 33
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Relationships Between the Colonial Settlers, People With Albinism, and
Witchcraft…………………………………………………………………………..39
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Medical Concerns ..................................................................................................... 55
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Relationship to Racial Identity Development ........................................................... 57
UN Agencies ............................................................................................................. 69
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Subjects ......................................................................................................................... 81
Procedures ..................................................................................................................... 84
Validity ......................................................................................................................... 90
Instrumentation ............................................................................................................. 91
Data Processing............................................................................................................. 95
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Ethical Assurances ........................................................................................................ 97
Themes From the Two Instruments: Davidson Trauma Scale and Wagnild
Resilience Scale ...................................................................................................... 111
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Themes From Community Group Observations ..................................................... 125
Outliers........................................................................................................................ 131
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Assumptions................................................................................................................ 138
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Limitations .................................................................................................................. 138
Outliers........................................................................................................................ 152
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Recommendations ....................................................................................................... 153
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Appendix E: Subjects’ Performance on the .................................................................... 179
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Wagnild Resilience Scale by Percentage ........................................................................ 179
Appendix I: Health-Seeking Behavior Scores Compared With Resilience Scores ........ 183
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List of Tables
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xii
List of Figures
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Dedication
To Beatrice A.W. Butler, my mother, who did not make it to see me graduate (Date of
death: May 18, 2013). She died before this process was completed but she was my
inspiration.
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Chapter 1: Nature of the Study
In this chapter the relationship between the persons with Albinism and their
challenges that relate to resilience were reviewed, including a consideration of the local
culture: Albinism’s prevalence, this population’s low life expectancy, and the medical
and clinical significance of their resilience. The people with Albinism’s condition was
summarized, and the socioeconomic, cultural, and medical challenges that support the
goal to conduct research in Tanzania was explored. Please note that this research
followed Under the Same Sun (UTSS) in using the term person with Albinism and similar
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variants to put the person before their condition (rather than using Albino, which equates
the person with his or her most visible aspect—Albinism). (See UTSS, 2010.)
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Background
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The field of cancer research has changed substantially over the years, with much
research and resources now examining resiliency among cancer survivors (e.g., a
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conference this past decade that focused on cancer survivorship and resilience; Rowland
& Baker, 2005). At the conference Resilience of Cancer Survivors Across the Lifespan
(National Cancer Institute, 2002), presenters emphasized the important role of resilience
in the survival of cancer-diagnosed patients and that cancer impacts all aspects of an
individual’s health. They showed that despite experiencing catastrophic events at times,
many cancer survivors manifest remarkable resilience in the face of illness. The
conference presenters also discussed early research among cancer survivors and the
diverse effects of the disease and its treatment on the survivors and their families.
Although all people with cancer need the same readiness and interventions, the levels of
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readiness and intervention vary across the world. In Tanzania, the average life expectancy
among people with Albinism is age 30 because of skin cancer (Hong, Zeeb, & Repacholi,
detection and removal of precancerous tissues (e.g., in cancers of the cervix, colon, and
rectum), as well as the diagnosis of cancers at an early stage, when they are most
treatable (Rowland & Baker, 2005). Cancers that can be diagnosed early through
screening include cancers of the breast, colon, rectum, cervix, prostate, oral cavity, and
skin. However, screening is known to reduce mortality only for cancers of the breast,
colon, rectum, and cervix. A heightened awareness of changes in the breast or skin may
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also result in detection of these tumors at earlier stages. The American Cancer Society
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has found that cancers that can be prevented or detected earlier by screening account for
at least half of all new cancer cases (Rowland & Baker, 2005). Okoro (1975) argued that
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early and regular examination of all people with Albinism for detection and treatment of
various premalignant and malignant lesions to which they are prone should be included in
the anti-cancer campaign to which the medical world is committed. He also argued that
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occupations.
This review of cancer is to assist in understanding the challenges that confront the
person with Albinism in Tanzania, who are predisposed to skin cancer because of their
lack of pigmentation and because of Tanzania’s arid climate and long periods of direct
sunlight (Climatemps, n.d.). This is an important area of research because of the high rate
of skin cancer among persons with Albinism in this area and their low life expectancy
(Hong et al., 2006). Next is a discussion of how Albinism was defined in this study.
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“Hong et al. (2006) describes Albinism as a genetic, inherited condition, caused
by a recessive gene that occurs in all populations of humans and animals. Oculocutaneous
tyrosinase-positive Albinism, is the most prevalent type found throughout Africa, and
OCA1, tyrosinase-negative, is less prevalent” (Hong et al., 2006, p. 1). Because of their
lack of melanin, people with Albinism are more susceptible to the harmful effects of
ultraviolet (UV) radiation exposure. This population faces issues such as photophobia,
decreased visual acuity, extreme sun sensitivity, and therefore increased risk of skin
cancer and a lower life span is less than others’ in Africa in part because they are more
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likely to develop skin cancer and are not likely to seek help for it (Hong et al., 2006).
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People with Albinism also face social discrimination, worldwide, as a result of having an
skin cancer and those who do not, was considered; this resilience may be attributed to
surviving both discrimination and skin cancer (Hong et al., 2006). People with Albinism
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face social discrimination and stigmatization because of their appearance (Hong et al.,
2006). People with Albinism in Tanzania are similar to people with Albinism in other
parts of the world: They are often considered strange and enigmatic.
There was little research that considers how Tanzanians with Albinism are
affected by the extreme African heat or by discrimination, or how they feel about the
impact of discrimination and skin cancer on them. Persons with Albinism in Tanzania
live in a country where there is limited healthcare, they are called derogatory names, and
they have been the subject of recent attacks, including having their legs, arms, and other
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body parts dismembered and sold on a black market, allegedly because of superstition
associated with witchcraft (Dave-Odigie, 2010). They also die an early death because of
This research sought to reveal relationships between people with Albinism’s view
of their diagnosis and their help-seeking behavior. Literature discussed thus far suggested
that the lack of education, desperate poverty, and lack of traditional doctors prevented the
person with Albinism from having the information necessary to make informed decisions
about medical treatment and to get the treatment indicated (Cruz-Inigo, Ladizinski, &
Sethi, 2011).
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In spite of these challenges, people with Albinism seemed to have resilience. A
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goal of this research was to assist the people with Albinism in Tanzania with telling their
own story to the world. Although there have been articles by the National Organization of
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Albinism and Hypopigmentation (NOAH) and documentaries by Chang (2009a) on this
subject, research has not addressed the worldview of the people who live with Albinism.
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Instead, the focus of research has shifted from their healthcare needs to the attacks that
have occurred in Tanzania (Chang, 2009b). The focus on these attacks on Tanzania and
other parts of Africa has been seen as this region’s regression in the acculturation of
Nations, 1948), and its violations of other policies against crimes on humanity such as
House Resolution 1088 passed in 2010 (which renounces crimes against people with
with Albinism in Tanzania’s northwest mining frontier, which she felt was shrouded in a
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discourse of primitivism by the international and national press, sidestepping the
embedded in a global commodity chain and local profit maximization. The murders are
connected to the gold and diamond miners’ efforts to secure lucky charms for finding
minerals and protection against danger while mining. Using the concept of fetish
creation, Bryceson et al. interrogated the agency of those involved in the murders: the
miners who purchase these charms and the traditional (waganga) healers renowned for
their healing powers. Using the person with Albinism as a charm for good luck seems to
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Many African countries look to nongovernmental organizations (NGOs), often
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from other nations, to provide education about the condition of Albinism. The U.S.
government has been called on for help in this situation; for example, Congressman
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Gerry Connolly of Virginia has taken up this cause by getting House Resolution 1088
passed by Congress on March 9, 2010. The Resolution 1088 was accomplished by the
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NGO Under the Same Sun (UTSS) lobbying Congress for sanctions to be imposed on any
country involved in brutal acts and attacks on people with Albinism of Tanzania. The
and saving this population, must be studied methodically, which requires peer-reviewed
communities’ (including the United States’) policy makers to address their issues. More
than 1,000 people with Albinism attended the NOAH conference in July 2010 in
Arlington, Virginia. Many presenters at this conference emphasized the need to address
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the issues of people with Albinism politically; other topics included information on the
condition of Albinism, current treatment, federally funded research, and social issues that
impact this community and other communities of people with Albinism around the world.
At the conference, Peter Ash stated that the NGOs in Tanzania have decided that social
humanitarian support in addressing the human rights issues of people with Albinism. Mr.
Ash’s team ran several workshops on the situation in Tanzania and UTSS’s work there.
(Peter Ash and his brother Paul Ash are Canadian-born people with Albinism who
founded UTSS, which they moved to Tanzania to help rescue Tanzanian people with
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Albinism from their plight.)
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According to Dave-Odigie (2008), Albinism in Tanzania has long been regarded
as a curse. People with Albinism have been tortured and killed throughout the country,
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and their bodies used in magic potions prepared by witch doctors. Tanzania’s president,
Jakaya Kikwete, recently appointed the first member of parliament with Albinism,
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This topic of attacks on people with Albinism for their body parts has been
featured in the press and has received a great deal of media coverage (Bryceson et al.,
2010; Dave-Odigie, 2008; NOAH, 2010). The attacks on people with Albinism have
made the healthcare of this population secondary to other traumatic events that may have
contributed to the resiliency of people with Albinism in Tanzania. More literature on skin
cancer and the impact on this population is needed, specifically research that is of an
academic caliber. This expanded research is needed to broaden the view and give
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credibility to the work that has and is being done to support and save this group of
people.
The survival of the person with Albinism is connected to the meanings ascribed
by the person with Albinism to his or her diagnosis, the relativity of or connection
between the mistreatment of people with Albinism in Tanzania, magical thinking, and the
history of colonialism’s connection to their resilience. One of the goals for this research
is to determine how the medical condition (e.g., skin cancer) of people with Albinism and
Albinism. This will also help illuminate how the person with Albinism pursues medical
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treatment for skin cancer and various other skin diseases related to Albinism. To date,
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there is limited documented research on successful approaches to enhancing resilience
and reducing vulnerability, including societal and medical vulnerabilities within this
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population.
The 2010 NOAH conference reviewed the relationships between people with
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Albinism and society. Besides focusing on skin cancer and social issues, this conference
emphasized treatment and follow-up to prevent skin breakdown and skin cancer. There is
limited material on the impact of the UV radiation from the sun in Africa on people with
Albinism as a cause of skin cancer and death. A review of skin cancer concerns that may
contribute to the person with Albinism’s resilience is necessary to understand the breadth
cancers have been treated as a relatively insignificant subject in the medical literature,
even though they constitute up to 50% of all cancers in Western countries. In Western
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culture, these tumors are well controlled and fewer than 5% of the people who develop
such cancers succumb to them (Luande et al., 1984). The continuous impact of
supersonic transport planes and fluorocarbon aerosols on the stratospheric ozone and the
increasing incidence of skin cancer might cause renewed interest or concern about further
Skin cancer among persons with Albinism in the equatorial regions of the world
has a higher incidence and a more ominous course, perhaps because of neglect (Luande et
al., 1984). Most people with Albinism in these areas who contract the disease die as a
consequence. Okoro (1975) noted that no Nigerian persons with Albinism older than 20
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years were free from either frank or premalignant skin cancer. Okoro also observed that
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only 6.3% of people with Albinism were older than 30 years, as compared with the
expected 20% of the general population. Thus, whereas skin cancer may not be a major
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cause of mortality in the Western world, it is indeed an important killer among the
African population of persons with Albinism (Luande et al., 1984). Epidemiologic data
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on Albinism, such as prevalence, are available for South Africa, Zimbabwe, Tanzania,
and Nigeria. Prevalence as high as 1:1,000 was reported for selected populations in
Zimbabwe and other specific ethnic groups in southern Africa. The stated life
expectancies are similar, wavering around the age range of 30 to 35. In comparison, the
prevalence of OCA is much lower—about 1:37,000 in the United States and 1:20,000 in
most populations in the world. Albinism prevalence ranges from 1:5,000 to 1:15,000
Looking closer, it was increasingly evident that people with Albinism were not
receiving or pursuing the healthcare needed to prevent skin cancer. The reasons for not
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receiving good healthcare are many; the most obvious is that Tanzanian government
provides limited healthcare and prevention of skin cancer because of lack of health
intensive look at the society impacted. For example, Braathen and Ingstad (2006)
interviewed 25 respondents with Albinism and their family members from Malawi, near
Tanzania. The findings from Braathen’s study showed that most of the people
interviewed had a poor awareness of what Albinism was, yet they knew it posed health
risks.
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people diagnosed with Albinism of Tanzania, it was discovered that there are several
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factors to consider. First, one must acknowledge the forces of nature relating to
interactions with other people and themes relating to the community and traditions of the
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Tanzanian African regarding the importance of traditional healers. The historical context
of Tanzania includes three key factors that may contribute to the resilience among people
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with Albinism: The environment, the reliance of the people on their beliefs about
One should also consider the sun and length of daylight in Tanzania, which are
challenges to the person with Albinism’s medical well-being. Hours of sunshine range
between 5.7 hours per day in April and 8.5 hours per day in September. On balance there
are 2,755 sunshine hours annually and approximately 7.5 sunlight hours for each
day(Climatemps, n.d.). Most professions, such as farming and mining, are outdoors. The
climate and economic resources pose a problem for people with Albinism.