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The Impact of Resilience on Help-Seeking Behavior

Among People With Albinism in Tanzania

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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

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The Impact of Resilience on Help-Seeking Behavior
Among People With Albinism in Tanzania

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

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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Viviane de Casto Pecanha, PhD, Member


Associate Chair of International Psychology, The Chicago School of Professional
Psychology

Vlada Brofman, PhD, Member


Lecturer, Boston University

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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

supervisor in Tanzania, Dr. Kitila Mkumbo, Senior Lecturer in Psychology and

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

support of my project. He is an amazing example of dedication to education and

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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,

and Mashuhuri M. Mwinyihamisi, Senior Research Officer, Tanzania COSTECH, for


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their patience and confidence in working with me to get necessary government approvals;

they clearly communicated their requirements, and I appreciate their high standards. I
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thank The Chicago School of Professional Psychology’s International Psychology

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

The Impact of Resilience on Help-Seeking Behavior Among


People With Albinism in Tanzania

Cora Butler-Jones

This research studied how people with Albinism in Tanzania view Albinism and

how their views contribute to vulnerability, resilience, and treatment—and whether

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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people with Albinism.

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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

Chapter 1: Nature of the Study ....................................................................................... 1

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Background ..................................................................................................................... 1
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Problem Statement ........................................................................................................ 14

Purpose of the Study ..................................................................................................... 18


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Research Question ........................................................................................................ 20

Theoretical/Conceptual Framework ............................................................................. 20


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Scope and Delimitations ............................................................................................... 22

Definition of Key Terms ............................................................................................... 23

Significance of the Study .............................................................................................. 31

Summary ....................................................................................................................... 32

Chapter 2: Literature Review ........................................................................................ 33

Introduction ................................................................................................................... 33

Research Strategy ......................................................................................................... 34

Albinism’s Challenges .................................................................................................. 35

Promoting Resilience ................................................................................................ 36

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Relationships Between the Colonial Settlers, People With Albinism, and
Witchcraft…………………………………………………………………………..39

Witchcraft in Tanzania: When Medicine Is Needed and There Are No Doctors

Around, to Whom Does One Turn? .......................................................................... 42

Present Context of People With Albinism in Tanzania ............................................ 45

Current Issues ............................................................................................................ 47

Refugees and the Importance of the Elimination of Conflicts Relating to Albinism in


Tanzania .................................................................................................................... 51

Social Context of Albinism ....................................................................................... 52

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Medical Concerns ..................................................................................................... 55
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Relationship to Racial Identity Development ........................................................... 57

Applicable Phase ....................................................................................................... 59


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Lack of Medical Resources and the Impact on Society ............................................ 65

Governmental Agencies ............................................................................................ 68

UN Agencies ............................................................................................................. 69
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Nongovernmental Organizations .............................................................................. 70

Areas in Need of Improvements ............................................................................... 74

International Response .............................................................................................. 75

Summary and Transition ............................................................................................... 77

Chapter 3: Research Design and Method ..................................................................... 79

Chapter Overview ......................................................................................................... 79

Research Question ........................................................................................................ 80

Research Design ........................................................................................................... 81

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Subjects ......................................................................................................................... 81

Procedures ..................................................................................................................... 84

Focus Groups and Meeting Arrangements ............................................................... 85

Validity ......................................................................................................................... 90

Internal Validity ........................................................................................................ 90

External Validity ....................................................................................................... 90

Instrumentation ............................................................................................................. 91

Data Processing............................................................................................................. 95

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Ethical Assurances ........................................................................................................ 97

Summary ..................................................................................................................... 101


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Chapter 4: Findings ...................................................................................................... 104
Introduction ................................................................................................................. 104
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Data Demographics..................................................................................................... 104

Age Characteristics ................................................................................................. 105


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Presentation of Findings ............................................................................................. 106

Themes Introduction ............................................................................................... 109

Themes From the Two Instruments: Davidson Trauma Scale and Wagnild
Resilience Scale ...................................................................................................... 111

Themes From Pamphlets and Propaganda .............................................................. 114

Themes From Discussions With Researchers on Resilience .................................. 115

Themes From Participant Interviews ...................................................................... 116

Themes From the Meetings With Community Groups ........................................... 121

Themes From the Analysis of the Video Resource ................................................ 124

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Themes From Community Group Observations ..................................................... 125

Summary ................................................................................................................. 128

Focus Group Observations .............................................................................................. 129

Outliers........................................................................................................................ 131

Analysis of Design ...................................................................................................... 133

Summary ..................................................................................................................... 135

Introduction ................................................................................................................. 137

Findings and Interpretations ....................................................................................... 137

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Assumptions................................................................................................................ 138
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Limitations .................................................................................................................. 138

Themes ........................................................................................................................ 139


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Themes from the Two Instruments: Davidson Trauma Scale and Wagnild Resilience
Scale ........................................................................................................................ 139

Themes From Pamphlets and Propaganda .............................................................. 142


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Themes From Researchers on Resilience ............................................................... 143

Themes From Participant Interviews ...................................................................... 143

Themes From the Meetings With Community Groups ........................................... 148

Themes From the Analysis of the Video Resource ................................................ 149


Themes From Community Group Observations ..................................................... 149

Summary of Themes ............................................................................................... 151

Outliers........................................................................................................................ 152

Analysis of Design ...................................................................................................... 153

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Recommendations ....................................................................................................... 153

Researcher Reflections ............................................................................................... 154

Suggestions for Future Research ................................................................................ 155

Summary ..................................................................................................................... 157

References ...................................................................................................................... 161

Appendix A: Questionnaire ............................................................................................ 172

Appendix B: Resilience (R) Scores Graphed.................................................................. 175

Appendix C: Resilience and Trauma Score Comparisons by Subject ............................ 176

Appendix D: Resilience Scores of the 25 Subjects ......................................................... 178

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Appendix E: Subjects’ Performance on the .................................................................... 179
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Wagnild Resilience Scale by Percentage ........................................................................ 179

Appendix F: Summary of Questionnaire Items on Knowledge ...................................... 180


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Appendix G: Comparison of Resilience andHealth-Seeking Behavior Scores .............. 181

Appendix H: Age of Subjects ......................................................................................... 182


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Appendix I: Health-Seeking Behavior Scores Compared With Resilience Scores ........ 183

Appendix J: Letters of Support ....................................................................................... 184

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List of Tables

Table 1: Trauma Detail...................................................................................................112

Table 2: Resilience Scale Scores ……….……………………………….……………. 113

Table 3: Health-Seeking Behavior Scores………………………...……………………118

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List of Figures

Figure 1: Illustration of Themes………………………………………………………110

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xiii
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,

2006). Regular screening examinations by a healthcare professional can result in the

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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environmental factors can be minimized by protective clothing, sunscreen, and indoor

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

Albinism (OCA) is a genetically inherited autosomal recessive condition; OCA2,

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

appearance that differs from most people (Hong et al., 2006).


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The high rate of resilience of people with Albinism, including those who do have

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

their high rate of skin cancer, as discussed above.

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

worldwide values, explicit in the Universal Declaration of Human Rights (United

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

Albinism in East Africa and seeks sanctions against perpetrators).

Bryceson, Jonsson, and Sherrington (2010) cited a series of murders of people

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

significance of the contextual circumstances of an artisanal mining boom firmly

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

contribute to the perpetrator depersonalizing the victim.

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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

effectiveness of this governmental measure, as well as other efforts aimed at supporting

and saving this population, must be studied methodically, which requires peer-reviewed

and academic-caliber research published in journals. The feeling in the community of

persons with Albinism is that pressure needs to be applied to the international

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

activism in a variety of forms (including research) is needed to gain worldwide

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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AlShymaa Kway-Greer, in an effort to eliminate discrimination.

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

the history of discrimination influence or contribute to resilience of people with

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

and depth of the need for health interventions.

As described in Luande, Henschke, and Mohammed (1984), non-melanotic skin

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

study of UV light carcinogenesis (Luande et al., 1984).

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

(Hong et al., 2006).

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

resources, poor education, and poverty. Understanding this phenomenon requires an

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.

In reviewing the environment and contributing factors to resilience among the

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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

traditional healing methods, and following ethnic or cultural tradition.

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.

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