University of Ghana http://ugspace.ug.edu.gh
 
COLLEGE OF HUMANITIES 
DEPARTMENT OF SOCIAL WORK 
 
 
LIVED EXPERIENCES OF PERSONS WITH ALBINISM IN 
LILONGWE DISTRICT, MALAWI 
 
 
BY 
THANDIWE TAMBALA-KALIATI 
(10601064) 
 
THIS THESIS IS SUBMITTED TO THE UNIVERISTY OF GHANA, LEGON, IN 
PARTIAL FULFILMENT OF THE REQUIREMENTS  
FOR THE AWARD OF MASTER OF PHILOSOPHY  
DEGREE IN SOCIAL WORK 
 
 
 
APRIL, 2020
i  
 
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DECLARATION  
This is to certify that this thesis is the result of research undertaken by Thandiwe Tambala -
Kaliati towards the award of the Master of Philosophy degree in the Department of Social 
Work, University of Ghana. This research has not been submitted to any university for any 
award, and authors whose work have been cited have been duly acknowledged.  
  
              30th April, 2020  
THANDIWE TAMBALA-KALIATI         DATE   
STUDENT 
 
                                                                                                           1/05/2020   
  
DR. KWABENA FRIMPONG – MANSO       DATE   
SUPERVISOR   
 
  
   06/05/2020 
    
DR. DORIS BOATENG            DATE   
SUPERVISOR   
  
  
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DEDICATION 
This work is, firstly, dedicated to GOD ALMIGHTY, my Jesus Christ and the Holy Spirit, 
for the opportunity and privilege accorded me to undertake this study and for abundant grace 
granted to commence and end well.  Again this work is dedicated to my husband, John 
Kaliati, my children Charlotte Akuzike, Wilfred Nyasha, Saoirse Sarah, my lovely prayer 
warrior mum Mrs. Magret Ndasowampangi and my Aunt Ellen Ndekha who supported me 
through thick and thin during the course of this work. This work is also dedicated to all 
persons with albinism in Malawi and beyond.  
  
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ACKNOWLEDGEMENT 
First and foremost, I would like to thank GOD who made this thesis a reality. I wish to 
express my indebtedness and sincere appreciation to my two supervisors Dr. Kwabena 
Frimpong-Manso and Dr. Doris Boateng, all of the Department of Social Work, for their 
guidance, supervision, objective criticisms, suggestions and corrections, which contributed 
immensely to the completion of this work. 
  
I would like to thank all my participants - persons with albinism, Mr. Michael Mvula for their 
time and contributions to this study. I thank the management of Association of People with 
Albinism in Malawi (APAM), Kanengo in the Protection of Rights of People with Albinism 
(KAPRA) and Musical Crossroads – Malawi (MCM) for their contributions to this study. I 
acknowledge the physical and spiritual support and encouragement rendered to me by my 
best friend Clare Kyemuhondo and her late mum.  
 
 My deepest gratitude also goes to my husband for always being my source of strength, 
understanding and for providing financial and emotional support. Finally, I would like to 
appreciate all those who I did not mention by mistake, thank you all, I could not have made it 
without your support.  God bless you all. 
  
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ABSTRACT 
Albinism is a genetic condition that is inherited from both parents due to a lack of or the 
complete absence of melanin in the bodies of persons with albinism (PWA). In Malawi, like 
any other country, persons with albinism are normally characterized by differences in skin 
and hair color, in addition to the wobbling of the eyes. This often leads to negative treatment 
from their family, the community and society. The lack of melanin and its accompanying 
effects limit their functionality because when exposed to the sun and strong light, some 
become short-sighted and are more prone to skin cancer and related lesions. This study 
examines the lived experiences of persons with albinism in Lilongwe District, Malawi, in 
order to identify the challenges that they face as well as their coping mechanisms. This is to 
ascertain recommendations in order to improve their living status.  The study adopted a 
qualitative design and selected thirty participants from both rural and urban areas. The 
participants included persons with albinism and key informants from the Association of 
People with Albinism in Malawi (APAM), Kanengo in the Protection of Rights of People 
with Albinism (KAPRA) and Musical Crossroads – Malawi (MCM) from Lilongwe District.  
The data was collected through face to face in-depth interviews as well as focus group 
discussions. The data was subsequently analyzed using Van Manen’s (1990) six steps of 
phenomenological analysis. The findings revealed that PWA encounter financial challenges 
because of frequent poor academic attainment which limits their employability. Because of 
the economic hardship, their health is compromised as they do not have the money needed to 
access proper medical care for their eyes and skin. These medical services are only available 
in the major hospitals in the cities. Considering this, the study recommends the provision of 
economic empowerment in the form of vocational training, donations and soft loans to aid 
these individuals when they are seeking to establish businesses that will allow them to work 
in the shade. This will help to boost their productivity and self-reliance. 
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TABLE OF CONTENTS 
DECLARATION ....................................................................................................................... 1 
DEDICATION ........................................................................................................................... 3 
ACKNOWLEDGEMENT ......................................................................................................... 4 
ABSTRACT ............................................................................................................................... 5 
TABLE OF CONTENTS ........................................................................................................... 6 
LIST OF TABLES ................................................................................................................... 10 
LIST OF ABREVIATIONS .................................................................................................... 11 
CHAPTER ONE ...................................................................................................................... 13 
INTRODUCTION ................................................................................................................... 13 
1.0 Background of the Study ............................................................................................................ 13 
1.1 Statement of the Problem ............................................................................................................ 19 
1.2 Objectives of the Study ............................................................................................................... 21 
1.3 Research Questions ..................................................................................................................... 21 
1.4 Significance of the Study ............................................................................................................ 21 
1.5 Definition of Terms ..................................................................................................................... 22 
1.6 Organization of the Study ........................................................................................................ 22 
CHAPTER TWO ..................................................................................................................... 23 
LITERATURE REVIEW ........................................................................................................ 23 
2.0  Introduction .............................................................................................................................. 23 
2.1  Challenges Faced by Persons with Albinism ........................................................................... 23 
2.2 Coping Mechanisms of Persons with Albinism .......................................................................... 32 
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2.3 Recommended Ways of Improving the Lives of Persons with Albinism ................................... 35 
2.4 Theoretical Perspective ............................................................................................................... 36 
CHAPTER THREE ................................................................................................................. 39 
RESEARCH METHODOLOGY............................................................................................. 39 
3.0 Introduction .............................................................................................................................. 39 
3.1 Research Design .......................................................................................................................... 39 
3.2 Study Area and site ..................................................................................................................... 40 
3.3 Study Population and Study Area ............................................................................................... 41 
3.4 Sampling Technique ................................................................................................................... 43 
3.5 Sample Size ................................................................................................................................. 43 
3.6 Sources of Data ........................................................................................................................... 44 
3.7  Methods of Data Collection ..................................................................................................... 45 
3.7.1   Pre – Data Collection ........................................................................................................ 45 
3.7.2 Observation ....................................................................................................................... 46 
3.7.3 Data Collection procedure ................................................................................................... 46 
3.7.4  Instruments for data collection .......................................................................................... 48 
3.7.5  Focus Group Discussions .................................................................................................. 48 
3.7.6 Individual Interviews ........................................................................................................... 50 
3.7.7  Key Informant Interviews ................................................................................................ 50 
3.7.8 Data Handling and Analysis ................................................................................................ 50 
3.7.9 Credibility and trustworthy ............................................................................................... 51 
3.7.10 Limitation of the Study ...................................................................................................... 52 
3.7.11 Ethical Consideration ........................................................................................................ 52 
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3.7.12 Dissemination of Findings ................................................................................................. 53 
CHAPTER FOUR .................................................................................................................... 54 
PRESENTATION OF THE FINDINGS AND DISCUSSIONS ............................................. 54 
4.0 Introduction .............................................................................................................................. 54 
4.1 Demographic Information of Participants................................................................................ 54 
4.2 The Challenges Faced by Persons with Albinism. ...................................................................... 56 
4.2.1 Education Challenges ........................................................................................................... 56 
4.2.2 Lack of Knowledge about Albinism .................................................................................... 59 
4.2.3 Economic Challenges ........................................................................................................... 62 
4.2.4 Stigma and Discrimination. ............................................................................................... 66 
4.2.5  Health Challenges.............................................................................................................. 73 
4.2.6   Emotional Issues ................................................................................................................ 77 
4.3 Coping Mechanisms of Persons with Albinism ....................................................................... 81 
4.3.1  Awareness Programs ......................................................................................................... 82 
4.3.2  Advocacy and Confrontation ............................................................................................. 85 
4.3.3  Withdrawal ........................................................................................................................ 85 
4.3.4   Support from Family and Friends ...................................................................................... 86 
4.3.5   Personal Development and Care ........................................................................................ 87 
4.3.6  Counseling ......................................................................................................................... 89 
4.3.7 Security .............................................................................................................................. 90 
4.3.8 Networking .......................................................................................................................... 92 
4.3.9 Acceptance ........................................................................................................................... 93 
4.4   Possible Ways of Improving the Lives of Persons with Albinism ............................................ 95 
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4.4.1 Provision of Financial Support .......................................................................................... 95 
4.4.2 Formation of Clubs and Specific NGOs for Albinism ......................................................... 97 
4.5   Discussion of Findings .............................................................................................................. 98 
CHAPTER FIVE ................................................................................................................... 109 
SUMMARY OF FINDINGS, CONCLUSIONS AND RECOMMENDATIONS ................ 109 
1.0 Introduction ............................................................................................................................ 109 
1.1 Summary of the Findings ....................................................................................................... 109 
1.2 Conclusions ............................................................................................................................ 112 
5.3 Recommendations ..................................................................................................................... 113 
5.4 Implications for Social Work .................................................................................................... 115 
REFERENCES ........................................................................................................................ 12 
Appendix 1: Interview Guide for Participants ............................................................................. 128 
Appendix 1a: Interview Guide for the Key Informants ............................................................. 135 
Appendix 2:  Letter of approval from the University of Ghana ...................................................... 138 
Appendix 3: Letter of approval from Malawi Ethics committee .................................................... 139 
Appendix 4:  Participant Information Sheet ................................................................................... 140 
Appendix 4a:  Kalata Yomudziwitsa Munthu Wotenga Mbali za Kafukufukuyi ........................... 142 
Appendix 5: Informed Consent for Participation in the Study ....................................................... 144 
Appendix 5a: Kuvomereza Kutenga Nawo Mbali M’kafukufuku .................................................. 146 
 
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LIST OF TABLES 
Table 1: Data source ................................................................................................................ 45 
Table 2: Demographic characteristics of the participants ...................................................... 55 
 
  
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LIST OF ABREVIATIONS 
APAM : Association of People with Albinism in Malawi 
COPOSO   : Contributing Positively to the Society 
CSO : Civil Society Organizations 
DIWA : Disability Women  In Africa 
ECH : Ethics Committee for the Humanities  
IAAD : International Albinism Awareness Day  
JCE : Junior Certificate  Examination 
KAPRA : Kanengo in the  Protection of Rights of People with  Albinism 
MCM : Musical Crossroad  Malawi 
MSCE : Malawi School Examination Council  
NGO : Non-Governmental Organization 
NOAH : National Organisation for Albinism and Hypopigmentation 
OC : Ocular Albinism 
OCA : Oculocutaneous albinism 
PWA  : Persons  with albinism   
SEPE : Supporting Employability and Personal Effectiveness 
SPF  Sun Protection Factor 
UN : United Nations 
WHO : World Health Organization 
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ABSTRACT 
Albinism is a genetic condition that is inherited from both parents due to a lack of or the 
complete absence of melanin in the bodies of persons with albinism (PWA). In Malawi, like 
any other country, persons with albinism are normally characterized by differences in skin 
and hair color, in addition to the wobbling of the eyes. This often leads to negative treatment 
from their family, the community and society. The lack of melanin and its accompanying 
effects limit their functionality because when exposed to the sun and strong light, some 
become short-sighted and are more prone to skin cancer and related lesions. This study 
examines the lived experiences of persons with albinism in Lilongwe District, Malawi, in 
order to identify the challenges that they face as well as their coping mechanisms. This is to 
ascertain recommendations in order to improve their living status.  The study adopted a 
qualitative design and selected thirty participants from both rural and urban areas. The 
participants included persons with albinism and key informants from the Association of 
People with Albinism in Malawi (APAM), Kanengo in the Protection of Rights of People 
with Albinism (KAPRA) and Musical Crossroads – Malawi (MCM) from Lilongwe District.  
The data was collected through face to face in-depth interviews as well as focus group 
discussions. The data was subsequently analyzed using Van Manen’s (1990) six steps of 
phenomenological analysis. The findings revealed that PWA  encounter financial challenges 
because of frequent poor academic attainment which limits their employability. Because of 
the economic hardship, their health is compromised as they do not have the money needed to 
access proper medical care for their eyes and skin. These medical services are only available 
in the major hospitals in the cities. Considering this, the study recommends the provision of 
economic empowerment in the form of vocational training, donations and soft loans to aid 
these individuals when they are seeking to establish businesses that will allow them to work 
in the shade. This will help to boost their productivity and self-reliance.  
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CHAPTER 1 
INTRODUCTION 
1.0 Background of the Study 
Genetic disorders like albinism that are inherited from both parents are difficult to avoid, 
especially in cases where both parents do not have knowledge of their family history. 
Children have a higher chance of being born with albinism if both parents either have 
albinism or carry the gene. Albinism is a genetic condition caused by a deficit in the 
production of the pigment called melanin. This pigment protects the skin against ultraviolet 
light and provides the skin with its color production (Franklin et al, 2018). The condition 
occurs at birth and lasts across the life course. The level of melanin differs in persons with 
albinism and results in differences of appearance in terms of skin, hair color and eye 
movements. The condition may predispose persons with albinism to lifelong physical and 
health problems such as visual impairment and ultra-violet induced skin damage that can lead 
to skin cancer. In Malawi, these health problems are exacerbated by poverty, exposure to 
harsh sunlight and a reduced access to adequate health care, especially in rural areas (Lynch, 
Lund & Massah, 2014).  
There are two major types of albinism namely oculocutaneous albinism (OCA) and ocular 
albinism (OC) with various subtypes  (Kagore & Lund, 1995; National Organisation for 
Albinism and Hypopigmentation, 2014; Brocco, 2015). Oculocutaneous albinism is passed 
from one generation to another through the autosomal recessive gene, implying that there is a 
one in four likelihood that a baby will be born with OCA (www.biomedcentral.com).  
Mutasa, (2013) cited  Oetting et al., (1996)when stating that in ocular albinism (OA), the 
mothers carry the gene and pass it to their sons. This is because it involves two variants based 
on the inheritance pattern involved. One variant is autosomal recessive ocular that occurs in 
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both men and women. The other is X-linked ocular with the symptoms occurring mainly in 
men. 
 
 
There are currently seven forms of oculocutaneous albinism (OCA) that are recognized. 
There are also subtypes. The pigment range of OCA varies from persons with no 
pigmentation at all to those with slight pigmentation with yellowish or brownish hair 
(Mutasa, 2013; NOAH, 2014). The most common form of albinism in Africa is 
oculocutaneous albinism (OCA) which affects the eyes, skin, and hair of a person. These 
individuals have little or no melanin. Ocular albinism (OA) affects the eyes only and it is 
much less common. However, there is melanin activity hence there is no clinical consequence 
regarding the pigmentation of the skin and hair (Oetting et al., 1996; Lund, 2005;Cruz-Inigo, 
Ladizinski, & Sethi, 2011;Kromberg et al., 2012; Wright, Norval, & Hertle, 2015). Clinically, 
four types of OCA have been examined and these are OCA1, OCA2, OCA3 and OCA 4. 
 
OCA1 is regarded as the most severe type of albinism characterized by an absolute lack of 
melanin production. This is because the tyrosinase in the individual is dysfunctional. This is a 
crucial enzyme that is required in melanin production (www.ncbi.nlm.gov). The other types 
of OCA show a pigmentation deposition over time (www.ncbi.nlm.gov). Type 1 OCA with 
subtype 1A (OCA1A) is the severest type of albinism with no melanin production at all. This 
type of albinism is extremely rare in black Africans (Kromberg et al., 2012; Kamaraj & 
Purohit, 2014). Type 2 OCA2 is the most common form of albinism in sub-Saharan Africa 
(Kromberg et al., 2012). OCA2 involves tyrosinase which produces a red-yellow 
pigmentation that culminates in sandy-colored hair and light brown irises 
(www.ncbi.nlm.gov). Type 3 OCA3 is a form of albinism that is more common among black 
Africans but rare in other races. It is also known as Rufous OCA and individuals with this 
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form of albinism have a reddish-bronze skin color as well as hair lighter than their skin color, 
usually ginger-colored, with blue or brown eyes (Kromberg et al., 2012). Type 4 OCA4 
involves physical features that are close to those of OCA2 where the hair color can range 
from yellow to brown depending on the amount of pigment that is present 
(www.ncbi.nlm.gov).   
 
Globally, it is estimated that the prevalence rate of persons with albinism is 1 in 17,000. In 
Africa, the overall prevalence rate for albinism has been reported as 1:5000 (Wright, Norval 
& Hertle, 2015).  In Malawi, currently there are 134,636 persons with albinism in the country 
of which 17,156 live in urban areas and 117,480 live in rural areas (Malawi Population and 
Housing Census, 2019). Nonetheless, with the current awareness and support for the rights of 
persons with albinism being undertaken by different stakeholders, the number of persons with 
albinism is expected to rise. It is unclear why the prevalence rate of persons with albinism is 
now so high, especially in rural areas. It may be due to the founder effect of some form of 
heterozygote advantage, local high consanguinity or high carrier rates (Lund & Roberts, 
2018; Kromberg, 2018). In addition, it  may be  due to various factors such as cultural 
practices, whereby some traditions marry from the same blood lineage, as well as the 
availability of good health and support services (Lund, Maluleke, Gaigher, & Gaigher, 2007). 
Furthermore, as the nation’s population increases, the prevalence rate of persons with 
albinism could increase across various geographical regions.  
There is a growing recognition and acceptance in Africa that people with albinism should be 
considered disabled (Franklin, Lund,Bradbury-Jones, & Taylor., 2018). In Malawi, persons 
with albinism are considered to have disabilities because their circumstances limit their 
participation in daily activities. This is in line with the definition of disability as stated by the 
World Health Organization that implies disability to be an umbrella term covering 
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impairments, activity limitations and participation restrictions (WHO, 2011). Impairment 
refers to a loss in bodily function or structure. Activity limitation refers to the difficulty 
encountered by an individual when executing a task or action. Participation restriction refers 
to a problem experienced by an individual who is unable to be involved in the control of their 
life situation (Government of Malawi, 2012). However, according to Franklin et al (2018), it 
is debatable whether one can classify albinism as a disability since on an individual level, 
people may not necessarily accept or adopt such a label, especially those with ocular albinism 
who  function without any physical or medical difficulties. 
 
Persons with albinism suffer socially due to myths, attitudes, social exclusion, labeling and 
the beliefs that are associated negatively with their condition which lead to stigma and 
discrimination.  As a result, persons with albinism are psychologically affected because of the 
injustice towards them. There are various studies that have reported on the violence and 
attacks against persons with albinism in some African countries (Cruz‐Inigo et al., 2011; 
Ikuomola, 2015; Franklin et al, 2018). Many societies consider them to be mysterious, evil 
and incapable of doing what other persons without albinism can do (Small, 1998). In 
Zimbabwe, persons with albinism are viewed as belonging to a magical world capable of 
doing good or evil (Machoko, 2013). In Tanzania and Kenya, it is believed that PWAs have 
the potential to access the spiritual realm to bring good luck and to take away bad luck. This 
has contributed to the attacks and killings targeting persons with  albinism (Nyamu, 2014; 
Burke, Kaijage, & John-Langba, 2014; Saffitz, 2018; Nkrumah, 2018).  Due to the stigma 
associated with albinism, some families in South Africa and Zimbabwe have killed or left 
persons with albinism to die (Baker, Lund, Nyathi, and Taylor, 2010). It was reported by the 
BBC (2017) that persons with albinism in Nigeria have been sidelined when trying to secure 
jobs for which they were qualified because of their condition. In a study conducted by 
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Bradbury‐Jones et al (2018), they investigated the beliefs, myths, traditions and attitudes that 
surround people with albinism in Uganda. They found that pigmented Ugandans were afraid 
of persons with albinism as they viewed them with suspicion and believed that they possess 
supernatural powers. In Ghana, persons with albinism suffer ridicule and labeling in schools 
and in the community due to the derogatory names labeling them such as “ofri,” meaning a 
“black person in a borrowed white skin” (Akomolafe, 2019).. This violation of their human 
rights, in addition to the isolation, labeling, belief stigma and discrimination due to their skin 
and hair color, makes the lives of persons with albinism miserable. The stigma and prejudice 
results in a limited access to equal opportunities and restricted choices when it comes to 
participation in the activities that can bring about social change.   
 
For women with albinism, relationships are difficult because they often experience rejection 
by the men who may have wished to marry them, unlike men with albinism who freely find 
love and marry people without albinism without any discouragement from their family 
members. Generally speaking, the family members discourage marriage if it is to a woman 
with albinism. The situation gets even worse for women who give birth to children with 
albinism. Such women suffer a double tragedy as they are rejected by both their husbands and 
families based on the myth that the child was conceived with men of other races or men who 
are cursed, unclean and witches (Salewi, 2011). Children born with albinism are treated as 
outcasts. Unfortunate ones are killed at birth or as infants, and others are hidden from the 
public (Baker et al, 2010). Furthermore, Braathen and Ingstad (2006), in a qualitative study 
on the experiences of young persons with albinism in Malawi, found that the fathers rejected 
and abandoned their children. This may be because the family members of children with 
albinism were viewed as being responsible for the albinism. This is because albinism is 
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thought to result from past misdeeds within the family, such as the infidelity of the mother 
(Blankenberg, 2000).  
 
In 2012, Malawi experienced a severe drought and poor harvest. Most households did not 
have food or a source of income to sustain their families. As a result, most households were 
struggling to make ends meet and they were in search of anything that could alleviate the 
economic and food crisis that they were facing. Strangers lured the relatives of persons with 
albinism and prompted them to harvest their body parts to make easy money and a better 
fortune to alleviate their suffering. Persons with albinism are thought to be a source of power 
due to their distinct look. The nation of Malawi was taken by surprise by the gruesome 
killings of persons with albinism in both its cities and rural areas. Weeks could not pass 
without hearing of a new case of PWA body harvesting, abduction, grave exhumation and 
attempted attacks. Malawi has one of the highest totals concerning such reports and attacks in 
the region. As of 2018, one hundred and forty eight (148) cases of murder, kidnappings and 
other albinism-related crimes were reported and seventeen (17) cases were ritual killings  
(Mostert & Weich, 2017;www.actionalbinism.org, 2019). In addition, it is believed that more 
cases have not been documented, especially those in rural areas. The killers abduct and kill 
persons with albinism and remove their eyes, breasts, feet and hands. These are sold to 
dealers in the neighboring country of Mozambique (Mostert & Weich, 2017). There are still 
yet more cases involving the killing and body part harvesting of persons with albinism, 
especially during election year. This is as some politicians believe that the body parts of 
persons with albinism will bring them electoral victory (Mail & Guardian newspaper, 2015; 
USS, 2017). In Malawi, the killing of a person with albinism which involved a police officer, 
a medical doctor and a Roman Catholic priest brought in a state of significant fear and 
insecurity for persons with albinism (Nyasatimes, 2018) who felt that the associated 
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institutions were supposed to be there to provide hope and security for them. The Convention 
on the Rights of Persons with Disabilities (Article 10) provides for their right to life and 
every States Party reaffirms that every human being has the inherent right to life as well. One 
should take all of the necessary measures to ensure its effective enjoyment by persons with 
disabilities which includes persons with albinism on an equal basis with others.  
In a bid to find a global solution to the plight of persons with albinism, the worldwide media 
coverage and the intervention of the United Nations declared PWAs to be a special group 
with particular needs that require special attention and protection. This was adopted by the 
United Nations Human Rights Council as resolution 28/L.10. In addition, civil society 
organizations (CSOs) and academia have helped to bring to light the other social issues of 
concern regarding persons with albinism that were never taken into much consideration 
before (United Nations, 2015). The resolution created the mandate of an independent expert 
concerning the enjoyment of human rights by persons with albinism. This new mandate was 
enacted to give a voice to persons with albinism and to contribute to their protection through 
greater awareness raising, hence the creation of International Albinism Awareness Day. The 
th
first International Albinism Awareness Day (IAAD) was held on June 13  2015 following a 
resolution put forward by the UN in 2014 (International Albinism Awareness, 2016). In light 
of the above, this study has explored the lived experiences of persons with albinism in 
Lilongwe District, Malawi.  This study sought to identify the challenges faced, the coping 
mechanisms adopted and the recommendations put forward to improve their lives.  
1.1 Statement of the Problem 
The plight of persons with albinism in Malawi remains a major concern of the nation. 
Challenges such as poverty, limited access to medical care, a lack of conducive learning 
environments and resources, a lack of community empowerment, limited participation in 
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community activities, discrimination and stigma all affect the wellbeing of persons with 
albinism (Nyamu, 2014). The lack of accurate numbers, systematic follow-ups and 
information on the whereabouts of persons with albinism makes it difficult for stakeholders 
and service providers to fully to cater for their basic needs throughout the nation, especially 
in rural communities, where they are rarely seen. Unfortunately, due to the limited number of 
persons with albinism in Malawi, a major challenge for persons with albinism has been 
understanding their own condition. Other people such as teachers, their family and 
community members also find it difficult to understand albinism, making it difficult to 
provide for the necessary needs of persons with albinism.   
 
The attacks, threats, killing, abduction, possession of body parts, and the exhumation of the 
graves of persons with albinism has left their family members traumatized upon seeing the 
dismembered bodies of their relatives. Furthermore, some of their family members have been 
attacked or hacked apart when the abductors invaded their homes to abduct or kill their 
relatives with albinism. This caused the affected families to voice their concern about the 
associated social problem as it required attention from both the government and relevant 
policy makers (United Nations, 2017). Studies about  albinism have been  conducted in 
Malawi by scholars  such as Braathen and Ingstad (2006), Lynch et al (2014) and Schwering 
et al (2015). However, even though such studies have been conducted, not much is known 
about the social wellbeing and lived experiences of persons with albinism in Malawi due to 
the scant information available. Thus this study sought to contribute by filling in this 
particular research gap by exploring the lived experiences of persons with albinism in 
Lilongwe District, Malawi. 
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1.2 Objectives of the Study 
The main objective of the study is to investigate the lived experiences of persons with 
albinism in the Lilongwe District in Malawi. Specifically, the study seeks to achieve the 
following objectives: 
 
a)  To identify the challenges faced by persons with albinism in Lilongwe District, Malawi. 
b) To find out the coping mechanisms of persons with albinism in Lilongwe District, Malawi. 
c) To ascertain the recommendations put forward by persons with albinism on how to 
improve their living status in Lilongwe District, Malawi.      
1.3 Research Questions 
The following research questions guided the study in line with the objectives:  
a)    What are the challenges faced by persons with albinism in Lilongwe District, Malawi? 
b)    How do persons with albinism cope in Lilongwe District, Malawi? 
c)    What are the suggested recommendations put forward by persons with albinism that can 
improve their living status in Lilongwe District, Malawi?  
1.4 Significance of the Study 
Most of the research studies conducted on persons with albinism have focused on the health 
and education challenges they face, including societal beliefs and superstitions. Therefore this 
study’s findings will provide a different perspective regarding the information available on 
the various challenges confronting persons with albinism and their coping mechanisms. The 
suggested recommendations will help the various stakeholders to find solutions that will 
effectively address the needs of persons with albinism in both the rural and urban areas of 
Malawi.  
 
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The findings of the study will contribute to bridging the lapses and gaps in the Malawi 
Disability Act that in turn exist in the policies relating to persons with albinism. The study 
will provide more information for the policy makers which could influence the design and 
implementation of the policies needed to empower persons with albinism. The study is 
important because it will also serve as a point of reference for further studies and stimulate 
national discourse on the support for persons with albinism in Malawi and the whole world.  
The study findings can help social workers in their work alongside other practitioners when 
providing aid to persons with albinism in order to allow them to better understand the 
challenges that they go through and their needs.  
1.5 Definition of Terms 
Pigmented persons: Anyone without albinism 
1.6 Organization of the Study 
This research is organized into five chapters. The first chapter is the introduction which 
describes the background, problem statements, objectives and research questions of the study. 
It also includes the significance of the study and the definition of the terms/concepts used. 
The second chapter presents a review of the relevant literature and several studies on 
albinism. The third chapter provides the research methodology that is comprised of the 
research design, the sources involved in the data collection, the data collection tools 
employed, the sampling technique, the sample size and the ethical considerations taken into 
account. The fourth chapter involves the data analysis, the data interpretation and the 
discussion of the findings. This is a very important part of the research because it provides 
the information needed to answer the research questions. Finally, the fifth chapter consists of 
the summary, conclusions and recommendations. This is another relevant chapter because the 
recommendations from the study will help to provide solutions to the phenomenon. 
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CHAPTER 2 
LITERATURE REVIEW 
2.0  Introduction 
This chapter presents a review of the literature on the lived experiences of persons with 
albinism. The chapter has been formulated in line with the objectives of the study. The topics 
covered in the literature review include a) the challenges faced by persons with albinism, b) 
the coping mechanisms of persons with albinism and c) the recommendations made by 
persons with albinism on ways to improve their lives.  
2.1 Challenges Faced by Persons with Albinism 
Persons with albinism face challenges relating to both themselves and their social 
environment. These challenges can be found within themselves, in their families, in the 
community and society and through the cultural beliefs present. The challenges often include 
poor education, a lack of understanding of the knowledge available about albinism, economic 
problems, stigma and discrimination, in addition to health and emotional issues.  
2.1.1 Education Challenges 
Persons with albinism find their society to be unfriendly towards them as most of the 
interventions do not favor them. Ndirangu's (2014)  study conducted in Kenya revealed that 
the education institutions are not fully equipped to offer specialized education for persons 
with albinism.  This agrees with the study conducted by Ndomondo (2015) that explored the 
challenges and opportunities related to educating students with albinism (SWA) in Tanzanian 
regular secondary schools. This revealed that the knowledge of the learning needs of students 
with albinism is still low among the body of teachers, school managers and educational 
supervisors. Therefore, the students with albinism who are generally visually impaired lack 
both support and adjustments such as extra teaching, optical devices, special text books, 
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adjusted examinations and other learning materials with enlarged prints that are necessary for 
persons with albinism to learn successfully. When the school authorities fail to be properly 
oriented on the condition and needs of persons with albinism, it becomes quite difficult to 
accommodate them. This contributes to the high dropout rate of pupils with albinism due to 
the negative attitude held by society.   
 
The sidelining of persons with albinism begins early on in their lives. They are not always 
allowed to attend school (Baker, et. al., 2010). Persons with albinism are vulnerable and 
disadvantaged in different ways from the moment that they enroll in schools. Their striking 
differences in appearance  that look ‘white’ in a black population can lead to physical abuse 
such as bullying and name-calling by the students as well as the teachers (Wan, 2003; 
Ndomondo, 2015).  In a case study conducted by the University of Venda in South Africa, it 
was confirmed that other students would not sit near to the students with albinism in the 
classrooms. They avoided them at school events (Baker et al., 2010). In some instances, 
children with albinism are placed at the back of the class by pregnant teachers, as far away 
from them as possible (Metcalf, 2003). The pregnant teacher, upon being questioned about 
this, indicated that she feared that she will conceive a child with albinism if she looks at 
them. However, the child cannot see the blackboard, thus they fail to perform well in class 
(Ndomondo, 2015). In families where there may not be enough money to send every child to 
school, the parents may not opt to “waste” money on a child with albinism. This is a tendency 
that propagates the system of exclusion and leads to a high level of illiteracy among the 
persons with albinism (Allen, 2011).  Kisanga & Jethro's, (2014)  study investigated the 
impact of interventions in relation to the murder of persons with albinism in Lake Victoria, 
Tanzania. The study revealed that children with albinism no longer go to school alone. They 
do not go unless they are escorted by their father, mother or teachers as a result of the 
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abduction and killing of persons with albinism. Sometimes even the mothers are not allowed 
to walk outside for fear of the killers.  This reduces the chance of persons with albinism 
succeeding in life, hence they have a more miserable existence. 
 
2.1.2 Lack of Knowledge about Albinism 
A qualitative study by Braathen and Ingstad (2006)  examined the knowledge and beliefs held 
in an African setting in Malawi using a sample size of 25 participants. The authors found that 
most people with albinism, as well as their families, have very little knowledge about 
albinism as a condition. However, many know that the skin of people with albinism is very 
sensitive to the sun. The authors further found that the participants lacked knowledge 
regarding what special aids people with albinism need in order to function well in their daily 
life. This resulted in a lack of protective clothing, sunscreen and visual aids which are 
collectively vital to their daily functioning.  As a result, persons with albinism tend to fail to 
accept their condition as they have little knowledge of the biomedical explanation of it. This 
contributes to their marginalization by pigmented people (Cruz-Inigo, Ladizinski & Sethi, 
2011; Ndiragu, 2014; Brocco, 2015; Marçon & Maia, 2019). Lund and Gaigher (2002) 
conducted a study on the health intervention programs available for children with albinism at 
a special school in South Africa. The results concluded that the lack of knowledge about 
albinism can lead to many superstitions such as albinism being the result of witchcraft. In 
addition, the study found similar myths that advocate that families with babies that have 
albinism are the victims of witchcraft.     
 
2.1.3 Beliefs 
The traditional beliefs surrounding the birth of a person with albinism forces most parents to 
hide their children at home, fearing scorn from the community. The different beliefs and 
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myths related to persons with albinism tend to impact their wellbeing negatively. This results 
in their lives ending prematurely. According to Hong et al. (2006), the parents of children 
with albinism, especially the mothers, are subjected to many  myths concerning the origin of 
albinism. The lack of education and accurate information on albinism leads the mothers to 
being ridiculed by society and their psycho-social wellbeing is negatively affected. Such 
ridicule includes being accused of sleeping with white men, with the conception taking place 
during menstruation which is regarded as culturally unacceptable and the child being a 
punishment from the gods for an ancestor's wrongdoing. Because of this, the quality of life of 
children with albinism may be compromised (Hong et al., 2006) as they are associated with 
the alleged immorality of their mothers and evil deeds. Witchdoctors in Tanzania have 
created a market for the body parts of persons with albinism, including their genitals. The 
myth is that PWAs are believed to be immortal and thus beneficial in rituals related to the 
mining of gold and diamonds (Mswela & Nöthling-Slabbert, 2013; Burke et al., 2014; Burke, 
Kaijage & John‐Langba, 2014; Saffitz, 2018). People desperate for success in the form of 
good luck and money lead to a high rate of murder where  the victims are persons  with 
albinism that are principally killed for ritual purposes (Kisanga & Jethro, 2014). Such beliefs 
are fueled by poverty and a lack of education which leads to the occult market telling their 
clients to kill persons with albinism in order to become wealthy (Machoko, 2013). These 
beliefs force persons with albinism to hide out of fear of being killed and dismembered.  In 
South Africa, persons with albinism are often perceived as a curse whilst in Zimbabwe, they 
are linked to water spirits, ascribed celibacy and evil spirits. Similar findings regarding the 
experiences of persons with albinism in Ghana and Kenya are available (Nkrumah, 2019, 
2018; Nyamu, 2014). Bradbury‐Jones et al (2018) investigated the beliefs, myths, traditions 
and attitudes that surround people with albinism in Uganda. The authors found that most 
Ugandans fear persons with albinism, viewing them with suspicion and believing that they 
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possess supernatural powers. The authors noted that PWAs in Uganda experience a lifetime 
of discrimination and alienation.  
2.1.4 Economic Challenges 
Persons with albinism are limited in their execution of economic activity as a result of their 
albinism condition, which is a disability. Disability can result in poverty due to the limited 
opportunities available for skills development and employment (Lorna, 2005). The job 
market for persons with albinism is limited, unlike the market for pigmented people. This is 
because they cannot work under the sun as their skin is delicate and it can easily get blisters. 
This can lead to skin cancer (Oliver, 2012).    In order for them to effectively live a normal 
life, most of their income is spent on protective clothing and medical supplies. For instance, 
for pigmented people, other things may be a luxury but for persons with albinism, things like   
hats, sun screen lotion, spectacles, shoes, long sleeved clothes and monthly skin checkups at 
the hospital are necessary for their survival (Guy, 2006).  Persons with albinism are 
disproportionately more affected by poverty than other groups of socially-disadvantaged 
persons due to their historical exclusion (Bines & Lei, 2011). This has manifested right from 
the foundation of the education system due to the lack of adequate educational provisions that 
are suitable for them. Social discrimination has forced most of them to drop out of school. 
Later on in life, persons with albinism face more difficulties when trying to secure 
employment that requires a good background in education. This is as they are less educated 
compared to the rest of the population (Hong et al., 2006).  Persons with albinism struggle for 
social acceptance and their active participation in economic activities is a way of making 
ends meet.  
 
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2.1.5 Stigma and Discrimination 
Persons with albinism suffer stigma and discrimination in different forms because of their 
skin color and physical appearance, which contributes to their social exclusion. Brocco's 
(2016) study on albinism, stigma, subjectivity and the global-local discourses in Tanzania 
identified that stigma from the community was among the numerous challenging factors 
faced by PWAs. This includes strangers and those unfamiliar with persons with such a 
condition perceiving albinism as an abnormal condition.  Besides health concerns, persons 
with albinism also have to cope with psychological and social challenges Marçon & Maia, 
2019). Most social discrimination stems from a lack of education about the causes of 
albinism coupled with a limited awareness of genetic inheritance. This gives rise to different 
misconceptions about albinism.  Both their families and the persons with albinism are 
sub ected to stigma and discrimination by their community as a result of the traditional myths 
surrounding the cause of albinism. This causes psychological distress (Marc  on & Maia, 
2019). As a result, many external factors affect their inclusion in the social, political and 
economic spheres. The latter statement is supported by Songwathana and  Manderson (2001) 
and Link and Phelan (2001), who state that the unequal distribution of economic and political 
power arises because it is linked to the social hierarchies in society. With PWAs being a 
minority in society, it becomes difficult for them to be included due to discrimination and 
stigma. They are looked down on by those in a position of authority because of their physical 
appearance. Ndirangu (2014) adds that the challenges they experience tend to demoralize 
them both psychologically and economically.  Lund et al. (2007) revealed that some people 
believe that if one shares items like utensils or if they have had any physical contact with 
persons with albinism, then he or she will develop the condition. This contributes to the 
isolation of persons with albinism in their homes and community gatherings. This 
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stigmatization from society affects the way that persons with albinism engage in any form of 
productive activity (Linda, 2012).  
 
2.1.5.1 Terminology 
According to  Hong et al's (2006)  study in South Africa, it was confirmed that persons with 
albinism experience stigmatization from their fellow students, teachers and community. Their 
schoolmates give them many derogatory names. This is something that the authorities cannot 
control within the school setting (Ndirangu, 2014). Some families give names to their 
children with albinism as a way of expressing their feelings as a result of having a child with 
albinism. Such names may include expressions of bitterness, love, fear of the unknown or a 
need for vindication.  In addition, communities use names that are derogatory in nature when 
referring to persons with albinism which affects their social interactions as it brings pain into 
their life. This creates social markings that are cemented by use of demeaning language in 
reference to persons with albinism. This is in order to subject them to stigma and 
discrimination (Okoro, 1975). Kagore & Lund, (1995); Lund (2005)  revealed that the 
misconceptions and myths associated with teasing and name calling affects the level of self-
esteem held by the persons with albinism. 
 
2.1.6 Health Challenges 
Apart from the social, physical and economic challenges, persons with albinism experience 
health challenges due to a lack of proper health care systems that are available to meet the 
needs of their condition such as skin cancer screening and eye checkups. As most persons 
with albinism live in rural areas and are economically unstable, the distance barrier that needs 
to be overcome to access the major clinics and a lack of transport money contributes to their 
poor health status. Persons with albinism often delay seeking and receiving the medical 
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treatment that is vital for their health. Their skin is prone to skin cancer. Most of the time, 
persons with albinism seek treatment only when their skin problem is already advanced 
(Opara & Jiburum, 2010). Unfortunately, around 40% of persons with albinism with skin 
cancer do not conclude their treatment due to financial problems (Mabula et al., 2012)  or 
they miss follow-up sessions because of their distance from the medical facilities ((Opara & 
Jiburum, 2010; Kiprono, Joseph, Naafs, & Chaula, 2012). 
 
 2.1.7 Emotional Issues 
Emotions are feelings brought about by an individual perception of an experience (Mutasa, 
2013). According to Hong et al. (2006), persons with albinism experience emotional 
challenges because of the negative attitudes and stigma that cause fear within them, leading 
them to develop less assertive personalities than people without albinism. The authors further 
noted that persons with albinism tend to be more withdrawn from social situations in order to 
avoid being noticed due to psychological challenges. These findings are in relation to the 
studies conducted by (Braathen &  Ingstad,  2006) and (Wan, 2003)   who collectively found 
that persons with albinism often experience negative reactions, discrimination and 
stigmatization in their everyday life.  Persons with albinism experience unpleasant emotions 
such as shame, bitterness and depression (Luthar & Blatt, 1993)   which reinforces the feeling 
of low self-esteem. 
2.1.7.1 Fear 
The families of persons with albinism have been psychologically tortured and  negatively 
affected by the murder of persons with albinism (Kisanga & Jethro, 2014). The killings done 
for the purpose of getting body parts have brought about more fear and insecurity for the 
persons with albinism (Masanja, Mvena & Kayunze, 2014). There is a predominant state of 
fear and a lack of security which makes the persons with albinism forced to stay indoors or to 
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turn to others to seek refuge in different places. According to Kisanga and Jethro (2014), 
children with albinism are no longer going to school alone. They are escorted by their father, 
mother or teachers. Sometimes even the mothers are not allowed to walk outside, fearing that 
the killers that may overpower them and abduct the child. This has created feelings of 
inadequacy, helplessness and hopelessness, leading to anger directed at themselves and 
emotional withdrawal which arises from frustration. This, in turn, results in depression 
(Brown & Mankowski, 1993). 
 
2.1.7.2 Bitterness 
According to Mutasa’s (2013) study on the psychosocial implications of oculocutaneous 
albinism in Manicaland in Zimbabwe, it was established that stigma and discrimination 
provoke emotions like anger and crying. In some cases, it leads to depression.  Stigma and 
discrimination result in bitterness and low self-esteem which demeans the social identity of 
persons with albinism (Miller & Major, 2000). 
 
 2.1.7.3 Marriage breakup 
Persons with albinism experience psychosocial challenges in the context of the marriage 
institution where they find it complicated to establish steady marriage partnerships owing to 
the myths and misconceptions aggravated by a society that is not entirely ready to 
comprehend their condition. The condition for women with albinism is further compounded 
by gender dynamics (Mutasa, 2013). The lack of accurate information on albinism leads the 
mothers to being ridiculed and accused of sleeping with white men in society. Their psycho-
social wellbeing is negatively affected. In a study conducted in Kenya by Ndirangu (2014) to 
investigate the strategies that persons with albinism can apply in order to sustain themselves 
economically, they found that men often leave after their wives give birth to a child with 
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albinism. They leave the burden entirely up to the mother when it comes to take caring of the 
child. At times, even the mothers take off, leaving the child/children with their grandparents 
(Ndirangu, 2014). Most single parents/grandparents have no means of income and they live a 
life that is hand to mouth (Anderson, 2006). The quality of life of children with albinism may 
be compromised (Hong et al., 2006). There are similar studies that confirm the above report. 
For instance, Gaigher, Lund and Makuya (2002) found that even choosing a marriage partner 
is a serious challenge especially for female persons with albinism, unlike it is for males with 
albinism. 
2.2 Coping Mechanisms of Persons with Albinism 
Persons with albinism are stigmatized and marginalized in many areas of their lives such as 
intimate relationships, employment and access to public areas (Wan, 2003). Due to society’s 
exclusionary measures, they have developed coping mechanisms in order to manage the 
adversities that they are faced with by joining and forming support groups like religious 
congregations and/or community-based organizations (Wan, 2003). Persons with albinism, 
their families and society also manage to develop resilient strategies in order to overcome the 
misfortune that they face daily. 
Pooe-Monyemore, Mavundla and  Christianson's (2012) findings on the experiences of 
persons with albinism in Johannesburg, South Africa, revealed that persons with albinism felt 
that they ‘themselves’ can eradicate the myths and superstitions associated with albinism and 
thus maintain their self-worth . This was done by utilizing the counseling information and 
knowledge received from the albinism association in order to maintain a positive attitude by 
accepting themselves and conducting awareness programs on albinism. These problems are 
shown to their communities rather than hiding themselves from the public.  In addition, the 
PWAs in this study felt that unity among themselves in order to educate their communities 
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could help to eradicate the myths that are associated with them. Persons with albinism also 
aim to show the world that they deserve to be treated with dignity through their interactions 
with the external environment. This has influenced their self-image and fostered a sense of 
belonging at home and in the community. Social support groups such as religious 
congregations and community-based organizations also contribute to the formation and 
transformation of the subjectivities of persons with albinism regarding the creation of a group 
identity within their communities and society (Brocco, 2016). 
 
Persons with albinism are frequently disadvantaged across Africa, although community 
outreach programs try to provide support for them and their families (Hong et al., 2006). 
They provide the necessary information regarding albinism. Professionals, politicians and 
musicians in the higher socioeconomic strata have used their public status to support the 
cause of persons with albinism in order to improve the health care systems that appear to lack 
a certain responsiveness to the needs of persons with albinism (Hong et al., 2006).  
 
Fayoyin and Ihebuzor (2014)  examined the advocacy tools used for advancing the rights of 
albinos in Tanzania and Osus in Nigeria. The case study approach was utilized using 
secondary data analysis as the main source of information. The study found that advocacy 
plays a major role in influencing both public and policy outcomes for persons with albinism. 
Additionally, the advocacy suitably positioned in the national and international agenda and 
the involvement of key religious leaders who have spoken against the negative practices 
focused towards persons with albinism have both helped some of the traditional chiefs to 
abolish harmful practices in their communities.  The authors found that in Tanzania, among 
the formal support available was a pronouncement from the President in support of persons 
with albinism. This will lead to more arrests and the increased prosecution of the violators of 
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the human rights of albinos. To add to this, the position in the national and international 
agenda of albinism brings in more support for persons with albinism worldwide (Fayoyin & 
Ihebuzor, 2014). 
 
Persons with albinism are generally reported to be of a lower, if not the lowest, economic 
status in their society. Awareness groups and public health interventions help to support them 
when it comes to meeting and coping with their medical and psychosocial needs (Cruz-Inigo, 
Ladizinski & Sethi, 2011). Persons with albinism who have visual impairments are enrolled 
in specialized schools for the blind (Hong et al., 2006) where they learn Braille and other 
skills. In addition, Schwering et al (2015) indicated that all identified persons with albinism 
in Malawi were given a free pair of learner visual devices (LVDs) and spectacles. The 
authors noted that a file containing recommendations for the parents and teachers of children 
with low vision was handed over to the respective school head-teachers for safe-keeping 
(Schwering et al., 2015).   
 
Furthermore, Ndirangu (2014)  indicated that formal support in the form of rehabilitation, 
enhanced self-determination and independence in persons with albinism provides good 
avenues of awareness through which the PWAs are motivated and empowered. Improved 
security helps the persons with albinism to cope and live a peaceful life like everyone else 
(Cruz-Inigo et al., 2011). Due to the cultural and traditional myths regarding albinism, 
persons with albinism have to cope with being hunted for their body parts and they suffer 
both emotional and physical trauma (Cruz-Inigo et al., 2011) that is detrimental to their 
wellbeing.   
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2.3 Recommended Ways of Improving the Lives of Persons with Albinism 
When persons with albinism understand their rights and needs, they are able to provide better 
solutions to the challenges that they encounter. Poor eyesight is a major challenge that 
persons with albinism experience from infancy. Lynch, Lund and Massah (2014) and 
Schwering et al (2015) found that the provision of early eye screening for children with 
albinism improves and corrects their visual sensitivity. This helps them to avoid the 
progression of amblyopia (lazy eyes). 
According to Ndirangu (2014), providing PWAs with equal opportunities in terms of 
employment, relevant training and rehabilitation programs as well as sensitizing the various 
organizations present in the context to the need to support PWAs in their decision-making 
processes enables them to feel accepted in their society and environment. In support of the 
above, Braathen and Ingstad (2006) revealed that persons with albinism understand that they 
can contribute to society alongside people born with pigment. However, there is still the need 
for inclusion in the decision-making process to fight for their basic human rights. 
 
In addition to the above,  Linda (2012)  found that persons with albinism are empowered 
when people and organizations offer resources that enable them to feel accepted and able to 
participate in the building of society. This allows persons with albinism to engage in 
productive activities. Awareness programs that target persons with albinism living in rural 
areas may bring about an increased level of knowledge about albinism which could help in 
the management of their condition and extend their lifespan. The studies  conducted by Pooe-
Monyemore, Mavundla and Christianson (2012) and Kromberg and  Braathen (2006)  found 
that clinical genetic outreach programs in rural areas assisted the parents in the management 
of the condition of albinism through understanding and  acceptance, thus removing ignorance 
and  superstitions. 
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2.4 Theoretical Perspective 
Resiliency Theory  
Resilience is defined as the ability to bounce back from adversity, frustration and misfortune 
(Ledesma, 2014). Kumpfer (1999) grouped resilience into six major parts and they 
incorporated both process and outcome views. The six major parts are 1) the presence of 
stressors or challenges, 2) the external environmental context, 3) the person-environment 
interactional process, 4) internal self-characteristics, 5) resilience processes and 6) positive 
outcomes.  
 
Stressors or challenges activate the resilience process and they create disequilibrium or a 
disruption in the homeostasis of the individual or organizational unit (e.g. family, group, 
community). The degree of stress perceived by the individual depends on their perception, 
cognitive appraisal and the interpretation of the stressor as either threatening or aversive. 
Persons with albinism may also experience challenges from individuals, families, the 
community and culture itself which could hinder their wellbeing.   
 
 The external environmental context includes the balance and interaction of the noticeable 
risks, protective factors and processes present in the individual’s external environment in 
critical areas of influence (i.e. family, community, culture, school and peer group). These 
interactions change with age and they are specific to the culture, geographic location and 
historical period. Persons with albinism may fail to cope with the challenges encountered as a 
result of a lack of support. For instance, if at a younger age both the individual and the 
external environment fail to understand albinism, then demeaning names, stigma, 
discrimination and rejection are developed towards the persons with albinism.  
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Person-environment interactional processes include the transactional processes between the 
person and his or her environment. It also includes the care that others either passively or 
actively attempt to perceive, how they interpret and surmount threats, and the challenges in 
the environment encountered while trying to construct more protective environments. 
Likewise, persons with albinism are in a position to overcome challenges and difficult 
environments by adopting protective measures such as avoiding the sun, going for regular 
skin checkups, seeking counseling and information on albinism, forming their own clubs and 
by strengthening protective factors such as wearing protective clothing and applying 
sunscreen lotion. 
 Internal self-characteristics include an individual’s spiritual, cognitive, social/behavioral, 
physical and emotional/affective competencies and strengths. These are collectively needed 
to be successful in different developmental tasks, cultures and personal environments. 
Persons with albinism have the strength and desire to cope with the challenges around them 
from different corners, if they are given support at all. For example, seeking counseling for 
emotional support and attending church for spiritual support where they can engage in 
different activities are both great avenues. Socially, persons with albinism get support from 
other individuals with albinism as well as from NGOs. 
 
Resilience processes include unique short-term or long-term resilience and the coping 
processes learned by the individual through gradual exposure to the increasing changes and 
stressors that help him or her to bounce back through resilient reintegration (Richardson et al, 
1990). Persons with albinism develop their own measures to cope with their condition. This 
sometimes may depend on the intensity of the challenges that they are exposed to. For 
instance, some may opt to accept their albinism condition, which is long term, whereas others 
may opt to withdraw from social activities for the short term until they are healed.  
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Positive outcomes or successfu1 1ife adaptations concerning specific developmental tasks are 
supportive of later positive adaptations related to specific new developmental tasks 
culminating in a higher likelihood of reaching the global designation in adulthood of being a 
"resilient child or adult." This is, in a dynamic model, a positive outcome suggesting that 
resilience is also predictive of later resilient reintegration after a disruption or stress. Persons 
with albinism who bounce back from challenges are able to become resilient. Some can 
become successful in their academic careers, going on to advocate and advise their colleagues 
about albinism, thus becoming role models to those with the same condition. This promotes 
positive living. 
 
These six areas help to clarify the differences between environmental stimuli, transactional 
environment buffering processes, internal mediating self-factors and the resilience processes 
that are used to bounce-back after a challenge in addition to the final developmental 
outcomes of resilient persons with albinism. 
2.5 Usefulness of Resilience Theory 
The theory of resilience helped the researcher to understand how the risk factors such as poor 
eye sight, demeaning names and a lack of knowledge hindered the persons with albinism 
from bouncing back from situations such as dropping out of school. The theory was useful for 
identifying some of the factors that supported the persons with albinism when they were 
coping with their albinism including counseling, personal development, security, networking, 
acceptance of their albinism and support from their family and friends. 
  
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CHAPTER 3 
RESEARCH METHODOLOGY 
3.0 Introduction 
This chapter discusses the methods that were used when undertaking this study.  The chapter 
is comprised of the research design, target population, study population, sampling technique 
and sample size. The methods employed in the data collection and the steps through which 
the data was analyzed and interpreted are explained and lastly, the ways in which 
trustworthiness was ensured are also described in this chapter. 
3.1 Research Design 
Social research needs a design or a structure before the data collection and subsequent 
analysis can commence. A qualitative research method was used for this study by the 
researcher to record the untold stories of what happens, how it happens, why it happens and 
the way that it happens (Henning, 2004) in the context of the lives of persons with albinism. 
According to McMillan, James and Schumacher (2010), qualitative research is concerned 
with the processes and meanings that will enable the researcher to gain richer and in-depth 
information on the experiences of the participants. Using a qualitative research design 
enabled the researcher to understand the lived experiences of persons with albinism 
(McMillan, James & Schumacher, 2010), in addition to identifying their challenges, the 
coping strategies they adopted and their own recommendations to improve their  lives. Polit 
and Beck (2010) maintained that qualitative research gives the researcher the opportunity to 
conduct a study in an in-depth holistic manner by collecting rich narratives while using an 
unrigged research design.  
An interpretative phenomenological approach in this qualitative research study was 
specifically used. According to Smith and Eatough (2006), the interpretative 
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phenomenological approach focuses on making sense of human experiences and actions. It is 
concerned with the detailed examination of individual lived experiences and how individuals 
make sense of those experiences (Eatough & Smith, 2007). This approach, as it explores the 
personal experiences of persons with albinism, is concerned with an individual’s perception 
or account of an object or event (Smith & Osborn, 2008). Furthermore, an interpretative  
phenomenological study usually involves a small number of participants in order to 
understand how and why things happen and how people relate to the phenomenon (Smith & 
Osborn, 2008).  
3.2 Study Area and Site 
Lilongwe District, which is in the Central Region and Capital city of Malawi, was chosen as 
the study area. According to the Malawi Population and Housing census (2019), Lilongwe 
District has an estimated population of 2,626,901 of which 1,637,583 people reside in the 
rural areas and 989,318 people reside in the urban areas. The district was selected because of 
the location of the Association for People with Albinism’s (APAM) offices where the 
recruitment and identification of persons with albinism and related key informants was made 
easy. The organization is involved in activities that are geared towards addressing issues 
related to PWAs and it was thus able to provide useful information on albinism. 
APAM is a non-governmental organization that was established in 1995 that focuses on 
advocacy for persons with albinism. Their mission is to improve the status of persons with 
albinism in Malawi by advocating for fair treatment, respect and dignity in a manner that is 
consistent with the Universal Declaration of Human Rights and its Convention on the Rights 
of Persons with Disabilities (World  Albinism Alliance, 2015). APAM supports over 2,500 
persons with albinism across Malawi which totals about 25% of the population (Holsteijn, 
2016) in different catchment areas. Persons with and without albinism work for APAM. The 
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association is partnered with several organizations such as Sight Savers and Under the Same 
Sun which provide funding for specific activities and projects. 
 
The main functions of the association are to provide information and consulting services to 
the public authorities about albinism, to ensure that persons with albinism are taken into 
consideration when policies and legislation are formulated and to act as an advisory body for 
the authorities on matters related to persons with albinism in Malawi. In addition, APAM 
provides individual counseling on skin protection and it seeks to raise the level of community 
awareness on the issues surrounding albinism through public talks, the media and research 
studies  (Lynch, Lund & Massah, 2014).  
3.3 Study Population  
Population refers to any set or group of persons or objects that possess at least one common 
characteristic (Badu-Nyarko, 2011). For this research, both the population of persons with 
albinism and the key informants serving as the representatives of the three organizations 
involved namely APAM, Kanengo in the Protection of Rights of People with Albinism 
(KAPRA) and Musical Crossroads – Malawi (MCM) from Lilongwe District took part in this 
study. The APAM participants were from Lilongwe’s rural areas whilst those from MCM and 
KAPRA were from Lilongwe’s urban areas in Malawi. Both of these groups were 
purposively sampled to participate in this study. 
 
Kanengo in the Protection of the Rights of People with Albinism (KAPRA) is a registered 
non-profit Non-Governmental Organization (NGO) operating out of Kanengo Police Station 
with the aim of sensitizing the surrounding communities to the condition of albinism. The 
organization is operated by persons without albinism of which some of them are police 
officers in the Victim Support Unit at Kanengo Police Station.  Currently, the organization 
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does not have any sources of funding. The main functions of the organization are to collect 
the data of persons with albinism in their catchment areas, to safeguard the lives of new 
babies born with albinism by giving proper guidance and counseling on the care of children 
in the form of organized awareness, to educate the community about albinism and to provide 
support and skills to the community police force. KAPRA encourages the beneficiary to 
register with APAM as the mother body of PWAs to enable them to be considered for any 
other programs. They will also benefit from the donations that APAM receive from other 
donors. 
 
Music Crossroads - Malawi (MCM) is a registered non-profit Non-Governmental 
Organization (NGO) that was established in 2007. It aims to empower youths through music, 
an initiative that began in 1995 led by Jeunesses Musicales International (JMI) with Music 
Crossroads International. The training centre in Lilongwe promotes musical creation and 
performance as well as life skills training. The program also targets persons with albinism in 
order to encourage them to engage in skills training through the sponsorships and funding 
from the European Union. The training that focuses on employability skills utilizes the 
models known as Contributing Positively to Society (COPOSO) and Supporting 
Employability and Personal Effectiveness (SEPE). These programs are operational in the 
Netherlands, South Africa and Colombia. The participants go through a 12-week training 
program through which they acquire a life skill, after which they are awarded with a 
COPOSO certificate. Those under SEPE are awarded with an internationally-recognized 
SEPE certificate issued by Pearson Education, an international company focused (among 
other things) on the development of training and educational programs. 
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3.4 Sampling Technique 
Persons with albinism aged between 18 to 62 years were recruited in this study. The 
researcher envisaged that within this age bracket, the participants would have more to tell on 
their lived experiences. The inclusion criteria also included those who understood the 
Chichewa and English languages. Those who did not understand either Chichewa or the 
English language were excluded because the researcher could not get an interpreter for the 
other local languages. The key informants from APAM, MCM and KAPRA who had worked 
with persons with albinism for at least a year were recruited because they would have gained 
more experience related to the lives of persons with albinism.  
Purposive sampling technique was used in this study. Purposive sampling was appropriate  
because it helped the researcher to select the sample size based on their prior knowledge, the 
nature of the research objectives and according to the criteria determined by the researcher’s 
purpose (Babbie, 2013; Tuckett, 2005). It was also selected with the purpose of representing 
a location or a tie to a key criterion (LeCompte, Preissle & Tesch, 1993). Using a purposive 
sampling design helped the researcher to use her discretion for the selection of samples from 
the study population. Purposive sampling was appropriate because the researcher studied a 
small subset of the population of PWAs (Babbie & Babbie, 2007).  
3.5 Sample Size 
Thirty participants were sampled by the researcher consisting of fifteen females and fifteen 
males who met the criteria required by the researcher. Out of that number, twenty-seven 
participants were persons with albinism. Three persons without albinism were selected as the 
key informants from APAM, KAPRA and MCM in Lilongwe District. The final sample size 
was chosen because a qualitative study does not aim to generalize and the researcher reached 
saturation with the given numbers. Data saturation, according to Fusch and Ness (2015), is 
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reached when there is enough information to replicate the study once the ability to obtain 
additional new information has been attained and when further coding is no longer feasible. 
Furthermore, a large sample size could lead to repetitive data from the participants (Crouch & 
McKenzie, 2006; Mason, 2010). 
3.6 Sources of Data 
The primary data was collected through qualitative in-depth face to face interviews and focus 
group discussions in both the rural and urban areas of Lilongwe District. The in-depth 
interviews helped in the collection of the information grounded in the lived experiences of the 
research participants (Creswell, 2008).  It also provided the participants with the chance to 
express their subjective views about the issues that were discussed. 
 
The data production used in the study included three focus group discussions (FGD), 
individual interviews and key informant interviews. 
Method Used Number of Participants  Female Male 
Engaged 
FGD 1- men only (APAM) 8 0 8 
FGD 2 - female only (APAM) 6 6 0 
FGD 3 - Mixed (male  and female) 6 3 3 
(KAPRA) 
Individual interviews with the PWAs ( 3 7 4 3 
MCM and 4 APAM) 
Individual interviews with the key 
3 2 1 
informants (APM, KAPRA and MCM) 
Total 30 15 15 
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Table 1: Data source 
The researcher conducted two separate focus group discussions with eight males and six 
females from the remote areas of Lilongwe’s rural district. The participants were from the   
APAM catchment area. One mixed focus group discussion comprised of three men and three 
women was conducted at the KAPRA offices in Lilongwe’s urban district. In addition, three 
interviews were conducted with the participants from the MCM offices whilst the three 
individual interviews with the APAM members were conducted in their respective homes. 
One individual interview was held in a separate village in the rural area of Lilongwe District 
with a member of APAM and they were not part of the focus group discussions. Furthermore, 
individual interviews were conducted with the three key informants who were working with 
persons with albinism selected from APAM, KAPRA and MCM.  
3.7 Data Collection Methods 
3.7.1  Pre – Data Collection 
The initial informal conversations with the Program Manager of APAM and two persons with 
albinism were conducted in July 2017 in Lilongwe District, Malawi. Since the study was 
conducted in Malawi, it was a requirement of the National Commission for Science and 
Technology (The National Board for Research and Ethics Committee) to obtain clearance and 
approval from the Ethics Committee for the Humanities (ECH) of the University of Ghana. 
The approved ethical clearance from University of Ghana was submitted together with the 
other required documents to the National Commission for Science and Technology and the 
Ethics Committee for the Social Sciences and Humanities in Malawi for their final approval 
in order for the researcher to conduct their study in Malawi on persons with albinism. 
 
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3.7.2 Observation 
The researcher paid a visit to the skin clinic assigned to the PWAs in order to observe how 
they came to the clinic and how they were received at the clinic. A few weeks before the 
interviews began, the researcher spent a handful of days volunteering and collecting 
HIV/AIDS data for the PWAs on behalf of the Catholic Relief Service with an APAM 
member. This helped the researcher to familiarize herself with persons with albinism and 
some of the participants. A day was spent with the family of one participant to observe the 
way that he spent the day together with the rest of his clan members. 
 
3.7.3 Data Collection Procedure 
The researcher was granted approval to conduct research by the Ethics Committee for 
Humanities (ECH) of the University of Ghana, the National Commission for Science and 
Technology and the Ethics Committee for the Social Sciences and Humanities in Malawi. 
The researcher went to the APAM offices with the ethics approval letters together with a 
letter of introduction from the Department of Social Work of the University of Ghana to 
propose conducting interviews with the members of APAM.  APAM granted the researcher 
access to interview its members with albinism. APAM appointed one of its members, a 
person with albinism, in order to assist the researcher with the identification of suitable 
locations and a sensible recruitment process. The APAM member acted as a research 
assistant who helped the researcher to schedule the necessary meetings. The participants were 
recruited from the APAM catchment areas in both the rural and urban parts of Lilongwe 
District, in addition to the MCM and KAPRA offices respectively. Approval to conduct 
meetings with PWAs in Lilongwe’s rural district was sought through a member of APAM 
who informed the chiefs and the APAM committee leaders of the intended purpose of the 
meetings a few days before the initial meeting itself. This was necessary because it was a 
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sensitive matter to be associated with persons with albinism during the time when the study 
was being conducted. This is as there were many cases of PWA abduction and killing in 
Malawi. The families and community members were, as a result, very suspicious of any 
strangers in their communities who wanted to get in touch with PWAs. Furthermore, it was 
important for the researcher to win the trust of the participants especially after consulting 
with the leaders in their respective catchment areas. It helped the families to allow their 
relatives with albinism to participate in the study as they felt secure because their community 
leaders and families were aware of the meetings. The APAM office contacted MCM and 
KAPRA concerning the intended study on behalf of the researcher. With the help of the 
research assistant, appointments were booked to meet the participants from the APAM 
catchment areas, in addition to those of MCM and KAPRA. The twenty-seven participants in 
the study were recruited on the basis of having albinism whilst the three key informants were 
officials from APAM, MCM and KAPRA working with persons with albinism. This 
technique eliminated bias and gave every individual the same probability of selection.  
 
In all of the interviews and focus group discussions, the purpose of the study was explained 
to the participants before they willingly gave information. The researcher clearly articulated 
to the participants that there was no material or monetary gain to be gained by being involved 
in the research. However, the findings could still be used for policy guidance and advocacy 
work in the various communities.  The participants who were not comfortable discussing the 
issues related to albinism were excused from the research and those who participated agreed 
to a statement of consent in order to confirm their understanding of the study as well as their 
readiness to participate. The participants were not forced or coerced to partake in the 
research. They did so of their own free will. The rights of participants were respected. They 
were provided with an explanation of the research and they were told that they were at liberty 
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to terminate their participation if they did not feel comfortable, even though they had been 
encouraged to participate.  The participants then signed or thumb-printed a consent form as 
evidence that they had made an informed decision to participate in the research. With the 
permission of the participants, a voice recorder was used to record the oral interviews which 
complemented the field notes.  
3.7.4  Instruments for the data collection 
Two interview guides were designed for the persons with albinism and for the key informants 
respectively in both English and Chichewa (the local language). However, the interviews 
were conducted only in Chichewa based on the participants’ choice. The instruments were 
used to solicit information from the participants through focus group discussions and 
individual interviews. Two different interview guides for the participants and key informants 
were used to ensure consistency in both the content and context while remaining 
conversational and free to probe into unanticipated circumstances and responses  (Babbie, 
2013). The questions for the interviews were designed based on the literature review and 
resilience theory. 
 
3.7.5  Focus Group Discussions 
The researcher conducted three separate focus group discussions (FGDs) comprised of eight 
th
males and six females from the Lilongwe District rural area on 11  January 2018. One mixed 
gender focus group discussion comprised of three males and three females was conducted on 
th
16  January 2018 at KAPRA Conference Hall in Lilongwe District Urban area.  This was 
necessary because it was felt to be a conducive environment in which to conduct the 
discussions with persons with albinism. The focus group discussions lasted between two 
hours and two hours thirty minutes. This was because the participants spent the first fifteen 
minutes opening up. The participants in the mixed FGDs all resided in the city of Lilongwe. 
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The men and women in the rural areas were separated during the discussions to enable the 
participants to express themselves freely. This was because their culture does not allow 
women to talk much during special gatherings with men. The researcher wanted to hear about 
the lived experiences concerning gender. The mixed FGDs were used to find out if some of 
the experiences and challenges faced were the same for both males and females. The 
participants from the mixed FGDs were from different cultural backgrounds. 
 
The focus group discussions were conducted with six to eight participants and the researcher 
introduced herself and welcomed the participants. The participants also introduced 
themselves and the aim of the focus group discussion was explained to the participants. 
Ground rules were established where each participant had to mention his or her name before 
answering the question and they had to give room for others to express themselves freely. 
Any concerns and fears from the participants were checked and resolved. The questions were 
asked by the researcher according to the interview guide. Before the end of each gathering, 
the researcher thanked the group members for their participation, stressed how helpful the 
discussion had been and reassured them of their privacy. 
 
According to Casey and Krueger (2000), Krueger's method of (2000) focus group discussions 
should incorporate six to eight participants. Focus group discussions are seen of as 
appropriate research methods as they allow the participants to feel a sense of collective 
identity and solidarity (Kitzinger, 1994). Additionally, focus groups discussions often have 
the potential to stimulate the participants’ memories because the members of the group learn 
from each other, and exchange and build on each other’s views. This, in a way, can make the 
participants experience the research as an enriching encounter. Focus group discussions are 
helpful when one is researching difficult participants who are marginalized or stigmatized, or 
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who feel unsafe (Kitzinger, 1994) such as persons with albinism. Therefore, the focus group 
discussions minimized the sense of insecurity that the participants with albinism could have 
experienced and they made them feel safer, comfortable and more relaxed in a group research 
study. 
3.7.6 Individual Interviews 
Four individual interviews were conducted at the participants’ homes with their permission 
th th
on 18  and 19  January 2018. Three individual interviews were conducted at the MCM 
th
offices on 24  January 2018. Some of the interviews took longer because the participants 
took longer to open up in the in-depth interviews as they were shy. The interviews lasted 
between forty minutes and one hour.  
 
3.7.7  Key Informant Interviews 
An interview guide was utilized to collect the necessary data from the key informants. Three 
key informants were identified. The interviews with the key informants were conducted in 
their work places, namely the KAPRA, MCM and APAM offices. The interviews sought to 
establish what the key informants knew about the experiences of persons with albinism as 
they worked with them. The researcher also wanted to know the support that was being given 
by the government and donors to PWAs. 
 
3.7.8 Data Handling and Analysis 
Qualitative data was collected from the focus group discussions, individual interviews and 
key informant interviews. The data was transcribed and where necessary, translated into 
English. To analyze the data, the researcher used interpretative phenomenological analysis. 
An interpretative phenomenological-based approach was appropriate for the study as it 
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intended to bring to the forefront the everyday experiences of the sample group as presented 
during the interview. The researcher adopted Van Manen's (1990) six steps of 
phenomenological analysis. The following are Van Manen’s six steps of phenomenological 
analysis that were followed.  
 
The researcher repeatedly read the participants’ descriptions until the researcher was familiar 
with what had been said. The second step was re-reading the data in order to identify and 
highlight meaningful phrases, statements or words that seemed to be important concerning 
the phenomena being studied. Each significant statement was noted. Different statements 
were organized into clusters of themes. Common or similar themes in terms of meaning were 
identified and grouped together. The researcher tried to find links between the themes and 
then described and summarized them. Regularities and sets of similar ideas were grouped into 
sub-themes and then compared (Van Manen, 1990).  
3.7.9 Credibility and trustworthiness 
To ensure the credibility of the study, experts who were not part of this study provided their 
input through a peer debriefing. The findings of this research were presented to the members 
of the faculty of the Department of Social Work who are knowledgeable in qualitative 
research. The faculty members had the opportunity to query the research methods that were 
adopted for the study, in addition to the meaning and interpretation of the data. Colleagues 
and supervisors were consulted and their input was taken into account. In order to ensure that 
the study was trustworthy and credible, the researcher had to find out if the responses were in 
line with their thoughts during the interviews. The participants were asked repeatedly to 
verify the accuracy of whatever had been said or noted in order to help reduce bias.  
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3.7.10 Limitations of the Study 
The present study was conducted only in Lilongwe District with a small population size. The 
findings of the study may not be generalized. The study might be restricted because the 
researcher selected her participants purposively and used a qualitative research design.  
However, the study still provides significant information on the lived experiences of persons 
with albinism in Lilongwe District which could be useful concerning the different 
stakeholders. 
There are possibilities that data has been lost through the translation of the original responses 
from Chichewa (local language) into English. However, the researcher used the closest 
corresponding words that depict the ideas of the participants. To address this challenge, a 
second translator was employed to play back the audio-recorded data in order to verify the 
authenticity of the transcribed data. The study was conducted at the time when there were a 
lot of abductions, killings and body part harvesting targeting persons with albinism. To 
safeguard the lives of the persons with albinism, the location of the rural area where the study 
was conducted has not been mentioned in the study.  
3.7.11 Ethical Considerations 
Ethics are the rules that suggest the expectations about the most correct conduct towards any 
experimental subjects (Vadum & Rankin, 1998). To ensure that the researcher will operate 
within the expected research ethics limits, the following research ethical standards as 
stipulated by the American Psychological Association in 1983 were adhered to. Clearance 
and approval to conduct the research was sought from the Ethics Committee for Humanities 
(ECH) - ISSER, University of Ghana, Legon, the National Commission for Science and 
Technology and the Ethics Committee for the Social Science and Humanities in Malawi. The 
participants’ right to self-determination was respected.  
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When reporting the findings, pseudonyms were used in place of the actual names of the 
research participants. This was to ensure that the participants’ identity was not revealed. The 
researcher ensured that the participants were protected from physical and mental discomfort, 
harm and danger. Because the study was about sensitive emotional issues, prior arrangements 
with a registered counselor were made in case any of the participants experienced mental 
discomfort. The researcher was as open as possible with the participants. Plagiarism was 
avoided by acknowledging all referenced sources. 
3.7.12 Dissemination of the Findings 
The researcher’s goal is to first share the study findings with the participants in their different 
locations within Lilongwe’s rural district and Lilongwe’s urban district. The researcher will 
also share the findings with the NGOs working with persons with albinism.  The findings 
could help the relevant stakeholders to review their activities and to plan their interventions in 
line with the recommendations and needs of persons with albinism. Copies will be shared to 
APAM, KAPRA, and MCM, the Malawi Ethics body and the Ministry of Gender and 
Disability. Furthermore, the researcher will publish the study in human rights and albinism 
academic journals to enable scholars to fill in any suitable research gaps in the future. The 
study will also be made available for use in academia.   
  
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CHAPTER 4 
PRESENTATION OF THE FINDINGS AND DISCUSSION 
4.0 Introduction 
This chapter covers the findings of the study as well as the discussion of the findings. The 
findings are presented in terms of the demographic characteristics of the PWA participants 
and their lived experiences, including the challenges that they encounter as a result of their 
condition, their adopted coping mechanisms and the suggested recommendations that could 
make their lives worthwhile and productive.  
The demographic data of the participants shows their personal characteristics and the 
employment of the study population. It also predicts the quality of the data obtained for the 
analysis (Barro & Lee, 2013). For this purpose, their age, marital status, ethnicity, 
educational background and occupation status were assessed. 
4.1 Demographic Information of the Participants 
Age Range 18 - 62 years 
Marital (17) (3) Divorced (2) Separated (5) Single   
Status Married 
Ethnicity (21) Chewa (3) Tumbuka (2) Chawa (1) Ngoni   
Educational (4) No (9) (3) (2) (7) (2)   
Background schooling Lower Upper Junior MSCE  University 
Primary Primary Cert. 
School School  
Employment (15) (4) Casual worker (4) Student (1) (1) (1) 
Status Unemployed Messenger Admin Nurse 
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Table 2: Demographic characteristics of the participants 
The study selected 30 participants in total (15 males and 15 females). The final number is 
comprised of twenty-seven persons with albinism and three key informants from Lilongwe 
District. The participants for this study consisted of persons with albinism between the ages 
of 18 and 62 years, comprised of women between the ages of 20 and 62 years. The men were 
aged between 18 and 40 years.  
 
Regarding the marital status of the persons with albinism, seventeen out of the twenty-two 
participants were married. Three women were married to pigmented men, eight men were 
married to pigmented women and the remaining six were married to fellow persons with 
albinism. In addition, three women who were once married to pigmented men were divorced 
and none of the male participants were divorced. Two of the women who were separated 
were once married to pigmented men whereas none of the men had been separated. Five of 
the participants were single, including one female and four males. 
Regarding ethnicity, the study findings noted that twenty-one out of the twenty-seven 
participants were of the Chewa tribe normally found in the Central region of Malawi. Three 
participants were Tumbukas and one Ngoni, both from the Northern region. Two participants 
were of the Chawa tribe, mostly found in the Southern region of Malawi. However, all of the 
participants lived in Lilongwe District. 
 
In terms of their education background, four out of the twenty-seven participants did not 
attend school and nine had completed their lower primary education (standard one to four). 
Three participants reached upper primary level (standard five to eight). Sixteen participants 
who had no formal education, either lower primary or upper primary, and they were from the 
remote rural areas. Two of the participants managed to reach junior secondary level and 
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obtained a Junior Certificate (JCE).  Seven participants reached senior secondary level but 
they did not do well in their Malawi School Examination Council (MSCE) exams. One 
participant had a Junior Certificate (JCE) and three who had passed their MSCEs were 
undergoing tertiary courses in tailoring and music. Two of the participants had university 
degree qualifications in Business Administration and Nursing respectively. 
Out of the twenty-seven participants, eight had various occupations that were their source of 
income. These included four who were doing casual work in the community, included 
cultivating other people’s farms. Two of the participants were working as office messengers, 
while one was an administrator and one was a nurse.  Four of the participants were students 
while fifteen of the participants had no occupation, hence no source of income.  
4.2 The Challenges Faced by Persons with Albinism 
The following themes emerged for the challenges experienced by persons with albinism 
namely barriers to education, attitude, a lack of knowledge about albinism, economic 
restraints, stigma and discrimination, heath care and emotional issues. These challenges affect 
persons with albinism socially, emotionally and physically. 
4.2.1 Education Challenges 
Persons with albinism recalled the challenges that they experienced in terms of their 
education as young children. The challenges in education started from a young age, namely 
the moment that the PWAs enrolled, especially when their peers tried to make sense of the 
difference in their skin color and eye movements. The PWAs inability to see the blackboard 
well whilst all their peers were able to see without any challenges made the PWAs realize 
that they had problems with their eyes. In most cases, the PWAs did not get support from the 
teachers in their class because the teachers in those days did not understand albinism and how 
to handle PWAs in class. This is because it was not taught about in schools. They gave an 
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account of how they felt and how they struggled with their academic journey. The 
participants noted that the font size in the text books that were used in class was too small for 
them to read. The reading difficulties were also experienced as a result of their wobbling eyes 
which, according to them, made the letters in the books not stable. Sadly, the abduction of 
persons with albinism from schools started to make them to drop out of school. This is as 
they were afraid of being abducted and killed for ritual purposes. In their responses, they 
attested the following: 
  
When I was in school, I faced a lot of challenges because I could not see well, even when the book was 
very close to me. My eyes gave me tough times (Joy - Individual Interview, male - MCM). 
  
I have severe eye problem that worry me even up to now.  Because of my eye problem, I failed to 
progress in my school. Everything was difficult to me. The letters in the books were not stable and it 
was difficult to read them well (Rachel- FGD2, female, LL rural). 
 
Some of the participants experienced challenges when reading because it was difficult for 
them to see the blackboard despite sitting in the front row seats. This affected them in terms 
of their performance in school: 
 
I failed to do well in school due to the obstacles that I faced during my school days. I could not see well 
what was written on the blackboard when all of my friends in class did not have any problem. That is 
the reason why I could not continue with my studies (Daniel - FDG1, male, LL rural). 
 
My grades were always bad in school…  I was finding it difficult with my eyes to see the figures well 
on the blackboard in the class (Saul - FGD3, male, KAPRA – LL urban). 
 
Some of the participants expressed that they had to stop going to school because persons with 
albinism were being abducted when going to or coming back from school by people in the 
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macabre business of body part harvesting, specifically the body parts of PWAs. He narrated 
that: 
The news was all over that persons with albinism were being abducted and killed on their way to or 
from school. Me and my family were terrified and afraid. Immediately I stopped going to school due to 
the killings that are still taking place (James - FGD3, Male, KAPRA- LL urban). 
 
4.2.2 Attitudes 
The participants also expressed how they were treated by their peers, teachers, family and 
society. It was noted from the study that most of the participants dropped out of school at 
primary school level because of visual challenges. Nonetheless, two of the other factors that 
contributed to them dropping out of school included the attitude of their teachers and bullying 
by their peers, who were fond of pinching them while the teachers did not do anything about 
it. This was evident in the participants’ narrations: 
 
I stopped going to school when I was in class 3 because I had a very bad female teacher who used to 
call me names throughout the class session … (Rose- FGD2, female, LL rural) 
 
In our days, when a teacher was asking a question during [the] class session, he will not pick a PWA to 
answer the question despite the PWA knowing the answer. Instead the teacher will nominate a 
pigmented child. Worse still, if a person with albinism asks a question, then the teacher will ignore 
them and not answer (Solomon - FGD1, male, LL rural). 
 
When I was in school in lower primary, my peers thought that I did not have blood and they would 
come and pinch me to see if the blood would ooze from my skin (Sandra - FGD3, female, KAPRA, LL 
Urban). 
 
One participant expressed disappointment with the negative attitude of her parents. They 
never seemed to care about sending her to school to attain an education that could have 
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helped her to attain a good standard of living in the future.  She attributed it to the fact that 
she looked different compared to the rest of her siblings. She said: 
 
I am the only one in my family out of my seven pigmented siblings who doesn’t go to school. My 
parents will always say that they don’t have the necessary school fees for me (Brenda - FGD2, female, 
LL rural). 
 
4.2.3 Lack of Knowledge about Albinism 
Both the participants and their families were not knowledgeable about albinism. Most of the 
families did not receive counseling when the PWA was born. This resulted in the family not 
knowing that the condition of albinism requires special skin and eye care. As a result, most 
families did not seek clinical advice on the care of their children with albinism. Most of the 
participants came to know more about their own condition when the abductions and killings 
of PWA were publicized in the media.  
Furthermore, commenting on the causes of albinism, twenty out of twenty-seven participants 
said that they came to know about the causes of albinism two years ago in 2016 after 
spending so many years in ignorance. Information about albinism was received by some of 
the participants through the dramas and sensitization programs that were organized by APAM 
and another NGO called Tiritonse. The participants from the male focus group discussion 
narrated the following: 
 
We grew up without knowing what exactly albinism was, but recently, we came to know about it 
through the drama and sensitization program conducted by APAM and Tiritonse (Hope - individual 
interview, male – MCM). 
 
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I came to know about the use of lotion on my skin in just the past 6 months (May 2017) from Tiritonse. 
I did not know that my skin color was a condition that needs special care. I was living my life as 
anyone else does (Daniel - FDG1, male, LL rural). 
 
When I was young, I used to suffer from headaches and malaria frequently. Some people thought that 
mosquitoes were attracted to my skin because of my condition. This was thought to be true up until 
Tiritonse conducted a program in our community educating us on albinism then I came to know more 
about my condition (Mary - FGD2, female, LL rural). 
 
One participant expressed that a lack of knowledge about albinism as held by their family 
members affected the way that their parents took care of them, hence there were 
complications with their skin. It was also revealed that due to the lack of knowledge of the 
family members, the support available for persons with albinism was lacking. Families who 
were all pigmented with only one child with albinism struggled when it came to determining 
the best way of taking care of the child with albinism unlike the families whose parents and 
children both had albinism. The participants recounted:  
 
I grew up with my parents who did not have enough information about albinism. I was the only person 
with albinism in my household.  Sometimes, when I scratch my skin, some of my skin peels off and 
this causes additional pain and sores. My parents were helpless when it came to my condition 
(Happiness - individual interview, male – APAM rural area). 
 
My family did not understand my condition because I was the only one with that condition in my entire 
village and in the surrounding villages too. My family were in a dilemma and they could not support 
me well due to my required needs as a person with albinism (Saul - FGD3, male, KAPRA – LL urban). 
 
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The participants noted that they had not been wearing protective clothing, especially hats and 
long-sleeved clothes, to take care of their skin. This was due to a lack of knowledge on how 
important the items are to their health, coupled with a fear of looking different from others. 
 
We go to the hospital early in the morning and we put our hats in a bag or pocket. The nurses 
sometimes question us on why we are not wearing the hats. We feel that there is no sun heat and so 
there is no need for us to wear a hat (Rose- FGD2, female, LL rural) 
 
Sometimes my parents would give me a hat to wear but, as you know, here we don’t wear hats in 
schools so I was the only one wearing a hat. Most of my classmates were also interested in wearing it 
and I ended up not having it all the time! (Abraham - FGD3, male, KAPRA – LL urban). 
 
A key informant also commented on the inadequate wearing of protective clothing by persons 
with albinism: 
 
Persons with albinism wear inadequate clothing with much of their skin remaining unprotected from 
the sun which results in the development of skin cancer. Most PWAs cover their head and face while 
their neck and ears are exposed to the sun.  (Key informant 1-APAM) 
 
Furthermore, the participants noted that due to the lack of knowledge, sunscreen lotion was 
not effectively used on their skin:  
 
My parents were not all that conversant with my condition [and the fact] that it needed special 
sunscreen lotion despite them both being teachers. At times, my skin used to have blisters that came 
and healed but I did not know it was because of the sun (Cynthia -individual interview, female - 
APAM).  
 
A key informant attested that: 
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Persons with albinism have limited knowledge on how to effectively apply sunscreen lotion to 
maximize their protection. Sunscreen is applied using small dots in the places exposed to the sun only. 
The person has to wait before going out. As a result of the ineffective use of the lotion, most PWAs 
have the misconception that sunscreen lotion with a higher protection factor (SPF) is the best for them. 
(Key informant 1 - APAM) 
 
4.2.3.1 Beliefs 
The lack of knowledge about albinism in most of the families shows when they think that the 
condition is a result of being bewitched by their enemies in the community. There was a 
strong belief amongst the women with albinism that their condition was contributed to by the 
anemic condition that was experienced by their mothers during the pregnancy. Such beliefs 
further shatter the understanding of albinism, specifically the beliefs of the PWAs who were 
told that their mothers, in additional to anemia, had received a blood transfusion during 
childbirth. It was noted in this study that most of the women with albinism were born after 
their parents had given birth to other children without albinism. They had a strong belief that 
the first child/ren cleanse the womb of their mother, hence why the following children are 
born with albinism or lighter skin. With this type of belief among the PWAs and their 
families, it makes it difficult for them to understand that albinism requires special care when 
it comes to both their skin and eyes. In the view of the PWAs it was just a difference in the 
degree of skin color. 
During the focus group discussions with the women, there was a strong emphasis by the 
participants that society can be evil and that people can do anything to their fellow human 
beings as a result of envy and jealousy. This led the participants to believe that their mothers 
were bewitched due to a misunderstanding in their clan or community. This notion was 
revealed through the responses that they gave when they were asked what albinism is: 
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‘Albinism is [a] difference in skin color (Rachel- FGD2, female, LL rural). Another participant added that 
‘I think albinism is witchcraft-related. I suspect somebody did something to my mother when she was pregnant. 
That is why I was born like this’ (Sara - FGD3, KAPRA, LL Urban). 
I am a 46-year old female and born to a family with  eight siblings. I am the last born in the family and 
the only person with albinism. The first born in my family was very dark in complexion but the 
complexion of the other siblings kept changing to lighter skin.  I was conceived when my parents were 
older… my complexion is lighter than anyone else in the family. That is why I strongly believe that 
albinism is as a result of being conceived when the parent is older. In most families, the last born is 
lighter in complexion than the first born, which was agreed on by all of the female participants. Only 
the degree of lightness differs. My first three children were born without albinism and the last two 
children were born with albinism (Ruth – FGD2, female, LL rural). 
 
It was revealed by one participant during their in-depth interview that she thought that 
albinism was as a result of being born to an anemic mother. The participant had this to say: 
 
I was told that my mother did not have enough blood when she was pregnant with me. My mother was 
anemic even when she was giving birth to me but by God’s grace, I survived. So I am not sure whether 
my albinism is related to a blood shortage from mother to child (Gladness - Individual Interview, 
female - APAM). 
4.2.4 Economic Challenges 
The persons with albinism residing in the rural areas who depended on farming were 
economically more affected as they lacked support. The participants noted that they 
experienced poverty because their condition does not allow them to work effectively, 
especially under the sun.  Therefore, activities such as farming, which can expose them to the 
sun, are often practiced on a limited scale, thus they have insufficient resources such as 
finance, food and thus the inability to meet their basic needs. The participants mentioned that 
they must work early in the morning before the sun rises to avoid the heat, hence they are less 
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productive. In addition, pigmented people do not offer persons with albinism jobs as they 
think that they cannot work. The participants also said: 
 
My work is limited when there is too much sun. For example, I am unable to participate in a 
community pro ect called “food for work” where we help to clear the roads or we do community work 
to get food or cash. The work is done in a group of community members and we agree on the time to 
start the work, which is normally around 5am to 8 am. However, sometimes by 6:30am the sun is 
already too hot and I cannot manage to withstand the heat then I go home. Again, I cannot say that I 
will go earlier than my friends because my security is in danger.  As a result, my economic status fails 
to improve and I continue to live in poverty because the community cannot keep on adding me on the 
project knowing that I cannot work effectively on the sun like others. (Thomas- FGD3, male, KAPRA 
– LL urban) 
 
Living with albinism limits us economically. When we go to the farm because we cannot farm for 
longer hours due to the sun’s heat, we harvest very little crops which results in us having inadequate 
food reserves… (Ruth – FGD2, female, LL rural). 
 
With poverty in our family, we just wait for death. No one is ready to give us work in their field. I 
don’t have anything to feed our family. It becomes so difficult to even find soap to wash our clothes 
with to enable the children go to school with clean uniforms. As a result, the children stay in the house 
extending the poverty to the future generation (Joshua – FGD1, male, LL urban). 
 
It so difficult to get a casual job that can enable me to sustain my life. Sometime when I move around 
looking for a job, people think that I cannot do the work. Because of this, I normally get work from the 
people who know me very well although not on the usual occasions (Happiness - individual interview, 
male – APAM rural area). 
 
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Another participant who lost her sponsor revealed the pain that she experienced due to a lack 
of support. She noted that this sponsor was going to support her with a startup kit after the 
completion of her tailoring course but unfortunately, that was not the case. She lamented: 
 
I was identified by a pastor who owned a tertiary school and they gave me a full scholarship because I 
did not have any source of income.  Now this Pastor is dead and I have no hope in my future. I have 
tailoring skills but I do not have the money or the machines to do the work (Lovemore – individual 
interview, Male - APAM). 
 
It was found in the study that some of the participants ended up unemployed due to low 
education qualifications. This caused them to envy their classmates who were doing well in 
society. A participant summarized: 
 
… Most of our pigmented friends have secured very good  obs in town because they were able to do 
well in class while I was struggling with school and never succeeded. There makes a very big 
difference in our lives… (William - FGD1, male, LL rural). 
 
The study found that some of the participants were prevented from continuing with school 
because of their skin and because their lips had blisters with pus which required proper and 
special hygienic care. Therefore, due to a lack of financial resources, people with albinism 
and their wider households often fail to acquire basic materials such as lotions and soap for 
bathing and washing their school uniforms: 
 
It becomes so difficult to find soap to wash the clothes to enable the children go to school with clean 
uniforms. As a result, the children stay in the house until I get money for soap to wash their clothes and 
to bathe and for food (Mary - FGD2, female, LL rural). 
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4.2.5 Stigma and Discrimination. 
People with albinism experience stigma and discrimination throughout their lives. This was 
explained through the terminologies used to refer to them, their isolation from both their 
family and community members and their lack of involvement in the community activities 
and decision making. This has been explained below. 
 
4.2.5.1 Terminologies  
In many societies in Malawi, when a child is born, their name is given depending on the 
situation at that particular moment. Persons with albinism are not exempt from this practice. 
Right from birth when a child with albinism is delivered, most parents have unanswered 
questions and this is expressed in the names given to the child. Some of the names express 
the meaning of how the child was welcomed into the family. In such cases, some of the name 
meanings express bitterness such as “Mwatitha” which means “you have finished us” whilst 
others express the problems ahead for both the family and society, for example, “Mabvuto” 
which means “Trouble.” This is because the family is not aware of what the future holds for 
them when they have a child with albinism. Such names are also given to children with 
albinism when the mothers experience problems in their marriage as a result of giving birth to 
a child with albinism. Some men suspect that their wives have had a sexual relationship with 
a white man, hence the albinism of their child. However, some families gave loving names to 
their children with albinism such as Chikondi (Love), Chimwemwe (Happiness) and Mwai 
(Lucky).  
 
People with albinism, when growing up in their homes, also receive extra names from their 
family members which has often replaced their given names such as “Mzungu” which means 
a “white person.”  Although “mzungu” could sound pleasing when mentioned in a good and 
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loving way, at times it was mentioned in a derogatory manner. These generated negative 
emotions such as disappointment, frustration and anger when the demeaning names are given 
PWAs. Derogatory names were also given by their peers and community members. Most of 
the names were to do with their skin color being described as “red.” This is a total mockery 
of persons with albinism and it has made them feel discriminated and stigmatized against 
when they are found in the presence of people without albinism. 
 
Furthermore, when society started to understand albinism and the stigma PWAs experienced 
as a result of demeaning names, it became more difficult to mention persons with albinism in 
the local language of Chichewa. This is as most people were not certain if using the term 
“alubino” would be acceptable.  As a result, most people, in a bid to be on the safe side, 
would rather use a descriptive sentence than a single word. The same challenge was also 
experienced by the persons with albinism when expressing their preferred identification/name 
for themselves and for persons without albinism.  
 
One participant revealed that his mother gave him a name to prove her innocence or to 
predict the uncertainty or trouble that both would have to face in the future because of his 
albinism. He narrated: 
 
I asked my mother why she named me ‘Chiletso’ (meaning ‘forbid’ or ‘not welcomed’). She said that: I 
gave you that name to show my innocence… that I did not sleep with other foreign men.  Your father 
told me to dump you because of your condition but I refused, thus giving you that name (Hope - 
individual interview, male – MCM). 
 
When children grow up with such names, it makes them aware of the situation they are in. 
They become more defensive and upset with any additional names that other people may give 
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or call them by. The participants experienced negative emotions and anger when more 
demeaning names were given by other people, as noted below: 
 
Growing up in my entire life, I felt very disappointed and frustrated when I was young because of the 
names that were given to me... At home, both the adults and children gave me derogatory names. (Faith 
- individual interview, female - MCM) 
 
My friends started talking much about my skin color and the way that my eyes were moving. They 
started giving me names such as ‘Kafide’, ‘Kafira’ and ‘Kadiri’ (which means red or different from us). 
I used to be very angry when someone one called me one of those names (Thomas - FGD3, male, 
KAPRA – LL urban).  
 
In addition to the above, this study had the challenge of finding the most appropriate 
terminology to refer to people with albinism. It was observed during the interviews that both 
the key informants and persons with albinism did not mention there to be one right local 
terminology used for albinism. Instead of formal terminology, descriptive statements were 
used instead to describe persons with albinism. The key informant said the following when 
referring to people with albinism: … ‘Anthu angati amenewa’ is used which means ‘people like these 
ones.’ (Key Information 2 – KAPRA) 
 
The participants who were persons with albinism themselves said they prefer anthu obadwa 
chonchife, which means ‘people who are born like this (us)’… (Sandra - FGD3, KAPRA, LL Urban).   
 
With the above terminology used to refer to persons with albinism, any slight mistake in 
terminology can easily upset their emotions. This was observed during the interviews 
between the participants and the researcher. Unintentionally, the researcher, at the start of the 
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interviews, interchanged the words “persons with albinism” and “persons living with 
albinism.” It irritated the participants. One of them noted: 
 
I don’t like to be referred to as a person living with albinism. The best way to address me is as a person 
with albinism because I did not acquire the condition after I was born and I cannot reverse it! (Cynthia 
-individual interview, female - APAM). 
 
4.2.5.2 Isolation 
Some of the participants expressed being isolated by their own families because of their 
albinism. They also lamented that even in religious circles where one would expect to get 
solace and hope, people with albinism and their mothers experience stigma from their fellow 
church members:  
 
I cook my own meals separately from the rest of my family using different utensils. No one touches 
anything that I use. All of my family members do not love me and they do not want to be associated 
with me because I am the only one who looks different in my family and clan (Brenda - FGD2, female, 
LL rural). 
 
When I started attending Sunday school classes, some of the church members told their children not to 
sit close to me or to eat with me because I was an evil child. The children would inform me of what 
their parents told them about me (Hope - individual interview, male – MCM). 
 
My mother was invisibly excommunicated from the church because of my birth. Even now when she 
attends women's gatherings, the members will show through their body language that she is not 
welcome in the group (Joshua – FGD1, male, LL urban) 
 
A key informant confirmed that: 
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Yes, it is true that in some families and church members do not want to interact with people with 
albinism.  Some elders are too quick to judge people with albinism and their mothers. They are looked 
down on at all the times as sinners (Key Informant 2 - KAPRA) 
 
The participants expressed the challenge and disgrace that they had encountered when they 
were looking for accommodation in high density areas in the city. It was revealed that some 
landlords do not want to accommodate people with albinism in their compounds. This was 
evidenced by one participant's response: 
 
I was new to the community. My husband went to look for accommodation alone and he was offered a 
house. When we moved into the new house as a family, we were given back our money the following 
day and told to vacate immediately without any explanation (Thomas - FGD3, male, KAPRA – LL 
urban). 
 
Furthermore, the participants expressed that they felt discriminated against and sidelined 
when they went shopping in the city.  Most pigmented persons do not want to associate with 
them or even speak to them. At times when they enter the shops to ask for the price of 
something or to buy something, some of the shop owners give them a signal not to enter the 
shop. In some cases, when they enter the shop, most customers immediately exit. The open 
discrimination was also felt by their fellow community members during social gatherings 
such as weddings and funerals among others. These experiences made them feel pain and 
embarrassment: 
 
... when I enter into a shop where there are pigmented customers who are buying or asking for a price, 
some of them immediately stop the transaction and leave the moment that they see me entering the 
shop (Brenda - FGD2, female, LL rural). 
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Shop owners do not want us to enter in their shops because they know the other customers will leave. 
They will either chase us away when we try to enter the shop or they will wave their hand to signal us 
not to enter the shop… There are some shops that I have stopped going to (Rose- FGD2, female, LL 
rural). 
 
Sometimes pigmented people skip me after I have extended my hand for a handshake deliberately. 
However, they will greet each freely and exchange handshake greetings in a social gathering ... 
(Thomas - FGD3, male, KAPRA – LL urban). 
 
The participants also expressed that they encounter discrimination when they seek assistance 
from pigmented people in their community. They disclosed that: 
 
I was thirsty and went to a house along the road to beg for drinking water.  The woman gave me water 
in a glass and I was so grateful. After drinking the water and handing the glass back to her, she 
immediately threw it on the ground and broke it in my presence with anger while chanting evil 
incantations.  I was shocked at what I saw and I questioned myself as to what kind of discrimination it 
was (Hope - individual interview, male – MCM). 
 
 
I was chased away like a dog or a thief when I knocked on the gate in a residential area when I was 
looking for casual work. I didn’t understand what crime I had committed, asking for a  ob. Our 
pigmented friends really discriminate against and isolate us (Sara - FGD3, KAPRA, LL Urban). 
 
The killings in Malawi have contributed to the level of discrimination against people with 
albinism more than before.  
I have lived in the city of Lilongwe for my entire life, interacting freely with my neighbors and friends. 
However, the sudden killing of persons with albinism in Malawi in 2015 has affected my cordial 
relationship with my friends and the people who surround me. Most of my friends shy away from me 
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and I am now the center of attention in one way or another in my community because most of my 
community members and friends see me from a different angle. Some of my friends, who were bold 
enough, told me that they are afraid that the police may take/arrest them as suspects. This is because 
immediate friends are usually targeted and picked for investigations (Sandra - FGD3, female, KAPRA, 
LL Urban). 
4.2.5.3  Lack of Involvement  
The participants further expressed their dissatisfaction with the way that they are treated by 
the stakeholders when it comes to projects concerning PWAs. Some of them stated that they 
are not involved and that they are not given the opportunity to participate in programs that 
benefit them: 
The government commemorated World Albinism Day and they spent millions of Kwachas in the form 
of allowances to delegates who are not even persons with albinism… but it does not consider us for 
startup capital or economic empowerment to enable us reach the same level as our fellow pigmented 
persons. We need to hear success stories, not T/Shirts (Sandra - FGD3, female, KAPRA, LL Urban).  
 
There are a lot of programs that target persons with albinism and persons with disabilities on paper but 
nothing tangible is seen on the ground (Moses - FGD1, male, LL rural). 
 
I have been living in the community ever since I was born. I have seen different projects both 
government and non-governmental in my community. I have tried my luck several times to participate 
in some of the projects such as food for work. This requires community members to clear their roads 
for payment or a bag of maize but I am always not picked.  For that one, I thought that maybe the 
leaders were considering my condition versus the sun. What surprises me now is that even in other 
projects such as the project for HIV/AIDS, persons with albinism are not involved or included to make 
their own decisions.  …. Women with albinism are at a high risk of being sexually abused such as by 
rape as people believe in the myths that sleeping with a woman with albinism can cure their HIV, yet 
we are excluded from programs like this. I feel that we must also benefit from the HIV/AIDS 
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programs.  I feel that we are not involved because the program has monetary benefits. If it were free, 
they could have called us to join (Rachel- FGD2, female, LL rural). 
 
A key informant added that: 
 
Most organizations have not been involving PWAs in their programs. This may have been because 
various bodies, where PWA belong, do not advocate for them when it comes to benefiting from the 
existing community programs. There has been little awareness on the need to include PWAs in all 
programs. There are cases where the organizations are looking for PWAs to train but their bodies do 
not respond to the call. (Key Informant 3- MCM) 
4.2.6 Healthcare Challenges 
The people with albinism also indicated that they experienced various health challenges. 
These challenges included visual challenges, hearing problems, bleeding of the lips, skin 
problems, the non-availability of sun screen lotion, negative attitudes from the health 
personnel and the long distance to the health facility. 
 
Regarding the visual challenges, the participants mentioned that when the sunlight was too 
much, they could not clearly see both objects and human beings unless they were in close 
proximity. They further noted that because of the visual acuity, they could see only shadows 
if they were not wearing glasses. They explained: 
 
I face a lot of challenges related to seeing things or even people, especially if I am not near them…  My 
eyes hurt (Joy - Individual Interview, male - MCM). 
 
I have severe eye problem that worry me so much in my daily life. This is the reason why I have failed 
to progress in academia … (Rose- FGD2, female, LL rural) 
 
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The hearing challenge was another issue that the participants mentioned. Some of the 
participants noted that they were able to hear very well if the one talking to them spoke with a 
high tone of voice. During the interviews, it was observed by the researcher that the 
participants turned their ears to clearly listen to what she was asking them. The participants 
said: 
 
Since childhood, I have been experiencing problems hearing what people say if they are not loud 
enough. When I attend any social gathering and I sit at the back, I will miss most of the 
communication, unless I ask the person who is seated closest to me (Mary - FGD2, female, LL rural). 
 
The findings indicate that people with albinism experience cracked lips. Out of the twenty-
seven participants, four complained of having cracked lips that were painful and gave them a 
hard time. They lamented:  
 
Our lives are so miserable and painful due to the blisters on our skin and cracked lips without any cure 
(Joseph - FGD1, male, LL rural). 
 
Throughout my life, I have been experiencing cracked lips and this worries me so much (Rachel- 
FGD2, female, LL rural).  
 
Commenting further, evidence from the participants indicated that they faced skin-related 
challenges. This included feeling a burning pain on their skin when exposed to the sun, the 
development of blisters, the peeling of the skin and changes in skin color.  Furthermore, some 
of the participants indicated that due to their sensitive skin, they were allergic to any soap that 
they tried to use. The participants attested: 
 
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Hmm, for us we go through a lot of problems. You see these skins of ours… they are affected by the 
sun. Sometimes you feel like somebody has poured hot water on you (Joshua – FGD1, male, LL 
urban). 
 
You see how this skin color is? That is not how I looked before. It just started changing gradually. 
Even these sores on my body… I was told in the hospital that they are a result of my albinism. Other 
times, the skin just peels off by itself (Happiness - individual interview, male – APAM rural area). 
 
My skin reacts to any soap I use to bathe. I develop a goosebump skin rash immediately. Because of 
this, I bathe without soap sometimes. I don’t know the ideal soap for my skin type (Saul - FGD3, male, 
KAPRA, LL Urban).  
 
Despite the aforementioned skin challenges, the participants indicated that the sunscreen 
lotion that is meant to protect them from the direct heat of the sun is sometimes not available 
in most of the hospitals. This means that the people with albinism do not have easy access to 
it. This forces them to buy it expensively from pharmacies. Sometimes others resort to buying 
a cheaper lotion that is not recommended for them. Moreover, the participants complained 
that the knowledge of applying the sunscreen lotion only came after their skin was already 
damaged, thus the sun screen lotion was not very effective. They noted: 
 
You can see for yourself how rural our community is. We do not have any big health facilities that are 
equipped with the cream they tell us to use. So for some of us who cannot travel to the government 
central hospital to collect the cream for free, it becomes too hard for us to take care of our delicate skin 
(Brenda - FGD2, female, LL rural). 
 
Sometimes I am forced to use lotions such as Johnson and Johnson because there are no cheaper 
sunscreen lotions. The lotions drain much of our resources (Joy - Individual Interview, male, - MCM).  
 
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Despite the fact that we are now using the sunscreen lotion, for some of us, our skin is already damaged 
and we still have a struggle ahead of us (Aaron - FGD1, male, LL rural). 
 
The findings also showed that the participants experienced a poor reception and attitude from 
the health personnel when they visited the health clinics, contributing to their low attendance 
on the clinic days.  The participants said: 
 
When we go to the central hospital to get medicine and the skin lotion, we encounter a lot of challenges 
from the health personnel such as ridicule and shouting… (Daniel - FDG1, male, LL rural). 
 
Eeee, you have to get prepared psychologically and be strong as the medical personnel will shout at 
you and even sometimes treat you like a nobody.  Otherwise, you may end up coming back home 
empty-handed without the medication (James - FGD3, Male, KAPRA- LL urban). 
 
Finally, most of the participants complained of the long journey that they must embark on 
when going to the health facilities that provide skin care services, which are located in major 
hospitals only. PWAs are required to visit a skin clinic every month to undergo a routine skin 
review in order to detect the early signs of skin cancer. The health facilities within their 
communities do not provide the skin care services that are required for their skin type and 
most health facilities do not have qualified dermatologists in the rural hospitals. As a result, 
most of the time they are referred to the major central hospitals for further treatment. This 
increases the transport expenditure of the already vulnerable and poor individuals. The 
participants said: 
 
When I am in the village, it’s difficult to get access to the hospital due to the long distance between my 
home and the central hospital (Sara - FGD3, KAPRA, LL Urban). 
 
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A key informant had this to say on transport challenges: 
 
The majority of persons with albinism do not receive any cancer prevention and treatment services 
including accessing essential sunscreen lotion because of the distance to the health facilities (Key 
Informant 1- APAM). 
4.2.7   Emotional Issues 
Numerous emotional challenges including fear, bitterness and marriage breakups were 
reported by the persons with albinism in this study.  These emotional challenges have 
been explained below.  
4.2.7.1 Fear 
The participants mentioned that they experience fear due to the wave of violent deaths that 
has been happening in the country. They revealed that it is now getting very hard to feel safe 
and to trust people because some of the victims who were killed were given up to the killers 
by their own relatives who gave them crucial information about them. One participant said 
that: 
 
We always have to be careful with our lives because the same people you go with to cut and forage can 
bend up against you in the bush (Janet - FGD2, female, LL rural). 
 
I don’t have enough security. I am always afraid of people… of nearly everyone.  These days I   cannot 
go about freely as before… (Sandra - FGD3, female, KAPRA, LL Urban).  
 
Most of the participants in the focus group discussions said that before their albinism was 
brought into the limelight by the media, they survived and lived normal lives like anyone else 
in their community. However, the unwarranted killing of innocent persons with albinism has 
brought fear into their social lives. Some participants expressed: 
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I am now 60 years and growing up in my village, I did not hear about the killings or face any 
challenges. I grew up and lived my life as normal as anyone else (Mary - FGD2, female, LL rural). 
 
When the news broke that persons with albinism are being killed, I immediately stopped working in a 
big company as a mechanic. I left the city and rushed to the village because my parents were calling 
me… saying that I should leave everything and come back home for safety (Joy - Individual Interview, 
male, - MCM). 
 
Additionally, a key informant noted that news of the killings has further contributed to fear 
among the community members. They are afraid to report cases involving persons with 
albinism to the police as noted below: 
 
Individuals are afraid to report cases involving persons with albinism to the police because of the fear 
of being arrested or being considered a suspect (Key Informant 2 - KAPRA) 
 
Most participants said that the killings have brought fear and anxiety to the families of 
persons with albinism and they do not have peace, especially when there is news of more 
killings. The participants said that their parents and relatives have become worried, especially 
when they are not around and not picking their calls. The participants said that:  
 
My parents have to embrace courage when they see a police vehicle passing by our house or when they 
see new faces in the community. It’s like ‘Are they bringing bad news to them or are these new faces 
the so-called criminals preying on my children?’ (Sandra - FGD3, female, KAPRA, LL Urban).  
 
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The study established that persons with albinism sometimes experience a fear of unknown in 
a new environment due to loneliness. This was evidenced when one of the key informants 
said the following: 
 
The first few days when a person with albinism joins the school, they are very afraid and not 
comfortable in a new environment. They are usually stressed and nervous about everything that is 
taking place. They also frequently get sick as a result of the fear that they experience (Key Informant 3 
–MCM) 
4.2.6.2 Bitterness 
Some of the participants mentioned that they experience bitterness because of having 
albinism. Some expressed suicidal thoughts due to the struggle that they experience as a 
result of this condition: 
 
I have bitterness in my heart and I cannot pretend that all is well with me, despite the love my parents 
show me. At times, I feel like I should just end my life (Saul - FGD3, male, KAPRA – LL urban). 
 
Other persons with albinism did not believe that God had made them that way. They 
attributed their condition to being a punishment from God or as an act by evil men who they 
associate with witchcraft. The participants said:  
 
I don’t believe that God made me this way. I strongly believe that it was an act of envy from evil men 
that made me look like this (David – FGD1, male, LL rural). 
 
Growing up with albinism is a challenge. It's like a punishment or a curse from God for something that 
my parents or the village did wrong (Gladness - Individual Interview, female - APAM). 
 
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The study found that bitterness left many unanswered questions for the persons with 
albinism. This was especially prevalent in families and communities where there was only 
one person with albinism among pigmented people. One participant said that he feels that he 
fails to connect with his family due to the mismatch that he felt was too much to bear. He 
narrated that:  
 
Growing up as a person with albinism has not been easy for me. I always have unanswered questions 
on why it is only me in my family and the surrounding communities. Everything about me is different 
from others…   I used to ask myself if indeed these were my parents as there was nothing that was 
connecting me with them (Saul - FGD3, male, KAPRA – LL urban). 
4.2.7.3. Marriage breakup 
Some of the female participants experienced marital turbulence due to the birth of a child 
with albinism. Most births resulted in abandonment, rejection and insults. The participants 
revealed that in most instances, the women were left with the responsibility of taking care of 
the child with albinism alone. Some of the fathers of children born with albinism abandoned 
their homes for other women and never took further responsibility of the care of the children: 
 
When my husband saw that I had delivered a child with albinism, he abandoned me in the hospital. 
When I was discharged, he packed his clothes and left the house for good. He doesn’t care about me 
and the children. All of this happened because of my white skin color (Love more - Individual 
Interview). 
 
When my mother gave birth to a second son who is my elder brother, my mother did not have peace in 
her marriage because my brother had albinism. She experienced rejection and insults from my father 
and the entire clan (Brenda - FGD2, female, LL rural). 
 
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… my father lives in the same city where I live but he has never visited me. I am the only one who 
visits him. It pains me because it made me grow up like a fatherless child. My father has never 
bothered to assist with my school fees and welfare (Thomas - FGD3, male, KAPRA – LL urban). 
 
Another participant said that her marriage was badly affected because of the media coverage 
of persons with albinism. The media introduced some of the myths on persons with albinism 
that were not known to many people. She further stated that when her husband learnt from 
the media that the close relatives of persons with albinism were always picked by the police 
for interrogation and others jailed in the case of a killing, he became fearful and abandoned 
her. The participant revealed that:   
 
... My spouse was too afraid of being accused of conniving with the thugs, so he left (Abraham - FGD3, male, 
KAPRA – LL urban). 
 
Another female participant mentioned that she has put on hold the desire to get married 
because she is afraid of being killed. She stated that: 
… with the current death threats, I don’t think of getting married anymore. I am always afraid that men 
may not come with the intention of loving me but rather to harm me… (Sandra - FGD3, female, 
KAPRA, LL Urban).  
4.3 Coping Mechanisms of Persons with Albinism 
Persons with albinism have adopted several coping strategies when dealing with the 
challenges that they experience as a result of their condition. Nine themes emerged which 
include awareness programs, advocacy and confrontation, withdrawal, support, personal 
development and care, health care and record keeping, security, networking and acceptance. 
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4.3.1  Awareness Programs 
Most of the participants confirmed that different organizations have brought awareness 
programs into their communities. This was a result of the killing of persons with albinism by 
people in a macabre business. The awareness programs have helped persons with albinism to 
know that their skin color is a genetic condition and that with the proper care, they can live a 
meaningful life. The participants narrated that:   
 
We grew up without knowing what actually albinism was. We have just come to know about the 
condition recently through the drama and sensitization programs by an organization called Tiritonse. At 
first, we thought that it was just a different skin color from others in our community (Solomon-FGD1, 
male, LL rural). 
 
Before the wave of killings of persons with albinism that was going on in Malawi, most of us did not 
know anything about the causes of albinism and how to take care of ourselves. However, organizations 
such as Disabled Women in Africa (DIWA), APAM and Tiritonse came to educate us (Rose- FGD2, 
female, LL rural) 
 
Despite the unfortunate trend of attacking persons with albinism and its negative impact, it has also 
brought to light to the lives of persons with albinism as we were living in the dark.  Organizations have 
now come forward to educate us on how to take care of our skin and how to use sunscreen lotion with a 
good sun protection factor (Faith - individual interview, female - MCM). 
 
Some of the participants mentioned that the support rendered to them by the organizations in 
terms of providing skin lotion has helped them to experience a new life with an improved 
skin texture, from having no lesions to having supple skin: 
  
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Being the most hated people in our society… it could be that   was due to the way that our skin looked 
before since it had a lot of lesions. Now, things have changed because our skin has improved and we 
look more handsome than before (Joseph - FGD1, male, LL rural). 
 
The participants also identified that the availability of missionaries from Western countries in 
some of the rural areas where they resided has helped the parents of children with albinism 
get support when caring for them in the early stages of their life. In addition, the dedication of 
the missionaries to educate the participants on albinism and to support them with sunscreen 
lotion has helped them to deal with the distance challenges and also to live a fuller life 
without skin problems.  
 
My parents were given information about albinism by the Canadian missionaries … These people also 
solicited sunscreen lotion from their counterparts in Canada and they are the ones who helped to 
sponsor my education (Thomas - FGD3, male, KAPRA – LL urban) 
 
Furthermore, some of the participants indicated that knowing how to live better with a 
fulfilling life despite their condition has made them proud. These people were also found to 
be successful in life and they acted as role models for their friends both with and without 
albinism. 
 
Actually, I feel proud of myself and my condition because I know that I can live a normal life like any 
other person if I take care of myself very well…  Even though we are in a minority group, these days 
we are being used in advertisements which has made us celebrities (Abraham - FGD3, male, KAPRA – 
LL urban).  
 
I have never regretted being born with albinism. I am proud of the way that I was born, as it was God's 
will and it cannot be changed by anyone (Sandra - FGD3, female, KAPRA, LL Urban).  
 
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A lot of people admire my skin these days. My skin looks so supple and unique. I always encourage my 
friends with albinism when we meet for our routine checkups and gatherings that we have unique skin 
and that we need to take good care of it so then people can appreciate us.  I also tell them that the love 
of our condition begins with us (Moses - FGD1, male, LL rural). 
 
A participant cited that due to the current awareness programs in place for persons with 
albinism, organizations are now helping women who are divorced and left with the 
responsibility of taking care of their children alone when it comes to seeking a redress in the 
court of law:  
 
I was divorced from my marriage and DIWA helped me to claim the damages from my husband to give 
support to our children. Also the community members were supportive of our welfare by quickly 
taking action if we were maltreated by our spouses (Janet - FGD2, female, LL rural). 
 
Awareness programs and the support provided by the different stakeholders involved have 
helped persons with albinism to become more vigilant about any sudden social changes in 
society. The participants mentioned that: 
 
The interventions by the NGOs and the government have helped to inform us of the killings that are 
taking place in town. The information has helped us to be vigilant and careful in our endeavors (Rose- 
FGD2, female, LL rural). 
 
The torches and whistles that were given to us by DIWA have helped us to have light both in our 
houses and when we are walking outside in the dark. At least this enables us feel secure at night (Mary 
- FGD2, female, LL rural). 
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4.3.2  Advocacy and Confrontation 
The participants indicated that they coped by confronting those who were fond of ridiculing 
them. The persons with albinism noted that they threatened to report the perpetrators to the 
police, coupled with giving them information about albinism and how they are supposed to 
treat people with this condition. In the end, this acted as individual advocacy on the part of 
the participants as it helped them to educate the other participants who in turn educated others 
about albinism.  
 
A friend told me that he will sell me. I was so furious and I took it serious. I advised him not to say that 
again to anyone with albinism because they will report him to the police... Also there is one person who 
started calling me names that were demeaning. I was able to teach him about albinism and this changed 
his attitude towards us. Now he is teaching other people about albinism since he was harassing me out 
of ignorance (Solomon - FGD1, male, LL rural). 
 
4.3.3  Withdrawal 
An emotional participant mentioned that the exhuming and dismembering of her dead child 
with albinism the day after he was buried left her with bitterness and hatred. Since then, she 
no longer attends social gatherings and funerals: 
 
When my son aged 10 died, he was buried in the community cemetery. It was to our shock after a day 
when community members started coming, telling my family that the body of our son has been 
exhumed and that some of the body parts have been removed. They were asking us to go for a reburial 
but we refused. How can I bury my son twice?  Since it’s a dead body, I told them to let those who 
exhumed him rebury him. Since the incident occurred in 2016, I don’t go to the graveyard when there 
is a funeral in the community because I don’t want to see my son’s new grave again. I don’t have 
anything to do with any social activity in my community since I feel bitter and hate everyone (Janet - 
FGD2, female, LL rural). 
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Some of the participants said that because of the bitterness and rejection of their albinism 
condition, it has made them feel isolated. It was their choice to be reserved so then they 
cannot easily be noticed. This situation means that they do not fully enjoy their life compared 
to pigmented persons. 
 
I regret being born with albinism because I do not enjoy my life fully like others without albinism. I 
always feel reserved as though am in the wrong place all the time (Saul - FGD3, male, KAPRA – LL 
urban). 
4.3.4   Support  
Some of the participants indicated that since their parents were conversant with their 
condition and its needs, they supported them with their academic work at home.  This helped 
them do well academically and they were also found to have better careers in their adult 
years. The participants helped them to improve their financial status when they sold the 
finished products. The participants also indicated that the new skills complimented their 
missed academic years: 
 
I interact with other women where am able to learn some skills in cookery, knitting and socialization. 
This has helped me generate some finances to use to meet some of my basic needs (Gladness - 
Individual Interview, female - APAM). 
 
The participants further noted that they received support from their friends and well-wishers 
in the form of tangible materials such as hats and clothes, thus helping them to have the 
required protective clothing. They also indicated that they received information on personal 
security, especially from the local leaders. This helped them to cope with the challenges of 
insecurity. They narrated this in their own words:  
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At times, good Samaritans help me with brim hats and long-sleeved clothes which have been helpful 
when it comes to protecting my skin (Mary - FGD2, female, LL rural). 
 
Traditional leaders have tried to inform persons with albinism and their relatives of the available 
security that can be helpful in case our human rights are abused. Now at least we can feel secure and 
live in our own country without fear. The only challenge is that they do not include us when solving the 
other problems that we face (Ruth – FGD2, female, LL rural). 
 
According to some of the participants, support from their spouses who were working in 
institutions or doing business was helpful when it came to sustaining their family and meeting 
their basic needs. This made the participants happy as they felt that they were still loved and 
provided for, unlike other persons with albinism who are neglected:  
 
I am lucky that I still get support from my husband who works in an institution as a salaried worker.  
He buys everything such as fertilizer and goats, and he pays for the house rent (Rachel- FGD2, female, 
LL rural). 
 
I get my support from my husband who earns a salary at work and who fixes bicycles on a part-time 
basis. With that, I know that I cannot sleep hungry with my children and I do not have to beg from 
people (Janet - FGD2, female, LL rural). 
4.3.5   Personal Development and Care 
Narrating their experiences, some of the participants indicated that after experiencing 
challenges related to securing jobs and seeing some of their friends with the same condition 
excelling in their careers, they decided to further their studies. This was meant to improve 
their academic grades so then they could also earn a good living. The study found that with 
good academic grades, persons with albinism are able to secure good jobs: 
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I would like to re-sit my secondary school examinations to obtain good results so then I can get a good 
paying  ob. I am tired of repairing bicycles because there is no money in it to sustain myself… (Sandra 
- FGD3, KAPRA, LL Urban). 
 
For me, I just went back to studying at university after a hard life hit me. I was determined to learn no 
matter what because I wanted to live a better and decent life like others… although it was not an easy 
path as the letters were very tiny and I had to use binoculars to assist me with my reading (Cynthia -
individual interview, female - APAM). 
 
Some of the participants felt that it was their responsibility to protect and take good care of 
their skin.   
 
... I earn a good salary and I am comfortable buying my own sunscreen lotion with a higher SPF if I 
cannot get it for free. My life and health is more valuable to me than anything else (Cynthia -individual 
interview, female - APAM). 
 
Some of the participants revealed that issues with skin color are complicated at times 
depending on the beliefs and attitudes of the people that surround them in that moment. It 
was reported by the participants that some pigmented persons are receptive to anything that a 
white man does or says. This was experienced by a participant working in a hospital who got 
mistaken for a white doctor. This participant further said that when working on the patients, 
they opened up freely, unlike those who based their assumptions that nothing good can come 
from persons with albinism. 
 
In some wards, patients mistook me for a white doctor and others are afraid…  However, there are 
those who trust me when I attend to them (Cynthia -individual interview, female - APAM). 
 
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Furthermore, while all of the participants’ mention eye problems, some of them were able to 
overcome the challenge through surgery and the use of eye glasses.   
...my eyesight problem was rectified by surgery (Lovemore – individual interview, Male - APAM). 
 
I experience pain in my eyes, but now the school has given me tinted sunglasses that are helping to 
solve my problem (Saul - FGD3, male, KAPRA, LL Urban).  
 
Because of the eye problem, I cannot see well and I experience a sharp light. I wear glasses to help 
with my condition. Without glasses, I cannot see a person who is very far from me and sometimes even 
when they are near. I only see the figure but I cannot recognize the face well (Sara - FGD3, KAPRA, 
LL Urban). 
4.3.6  Health care and record management 
According to a participant, it was revealed that persons with albinism cope well when they 
are well informed of their condition and advised on the benefits of visiting hospitals for the 
routine screening of their skin:   
 
I received counseling on the benefits of taking good care of my skin by using sunscreen lotion and the 
medical doctor also screened my skin thoroughly... The person had more time with me (David – FGD1, 
male, LL rural). 
 
The study found that record keeping through a unique identifier on the personal file of 
persons with albinism at the skin clinics helps the clinic to following up concerning the 
attendance. This helps the hospitals and persons with albinism to access the treatment needed 
at any hospital in the country. The system also helps the medical personnel in other areas to 
easily access the information and history of the patient.                                                                                                                                                                                                                                                      
The key informant said: 
 
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When persons with albinism visit the hospital, they follow the normal procedure at the clinic, whereby 
they stand on the same line as pigmented individuals until they reach the point of seeing the doctor. 
However, the records of persons with albinism have a unique identifier which helps the medical 
personnel to treat them accordingly. The unique identifier also helps to stop the PWAs from collecting 
sunscreen lotion and zinc on behalf of their friends. The system allows each and every one to be 
attended by the medical doctor on a one-to-one basis (Key Informant 1- APAM). 
 
Some of the participants asserted that in other mission hospitals, especially those in the rural 
areas, the parents were allowed to collect the sunscreen lotion on behalf of their children. 
This allowed the school-going children to concentrate on their studies as most of the clinics 
were conducted on weekdays.  
 
…my parents were allowed to collect sunscreen lotion on my behalf, provided [hat they went with my 
health passport (James - FGD3, Male, KAPRA- LL urban). 
 
It was revealed by the key informant that apart from record management at the skin clinics, 
the Police Support Victim Unit in liaison with community policing has put in place 
mechanisms for registering all persons with albinism in the communities through their 
traditional leaders. During the process, it was noted that counseling services are also provided 
to persons with albinism and their family members: 
 
The Community Police, together with the local leaders, report and register any birth of a child with 
albinism in their communities. Counseling on the best care of the child and routine follow-ups are 
conducted by both the police and traditional leaders (Key Information 2 - KAPRA). 
4.3.7 Security 
Persons with albinism encounter threats, abduction and they are even killed for their body 
parts by their fellow human beings.  In a bid to protect themselves from these attacks, some 
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protective measures enacted by the police and individuals have been put in place.  It was 
found that collective efforts by the community members, their family and the police have 
gone a step further in terms of monitoring and safeguarding the movements of the persons 
with albinism. The participants commented: 
My family, community together with the police always makes sure that they know my whereabouts. 
There is a follow-up exercise being conducted by the community police (Happiness - individual 
interview, male – APAM rural area). 
 
Some community members, when they see me roaming around at late hours, become concerned and 
they ask me to rush home. Some will escort me to make sure that I am safely home (Sandra - FGD3, 
KAPRA, LL Urban). 
 
The community updates me with the current news regarding persons with albinism (Gladness - 
Individual Interview, female - APAM). 
 
One participant indicated that together with his mother, they fight for their human rights: 
 
My albinism has made my mother very stubborn. She will fight anyone who tries to make fun of my 
condition (Joshua – FGD1, male, LL urban) 
 
 It was reported by one of the participants that in order for her to enhance her security against 
attackers, she moves with a group or with other family members, especially relatives, for 
protection. She revealed that when leaving the home, her family members take note of the 
people that she leaves with.  
 
...When there is a funeral or social gathering in the community, we go as a group… so, my protection is 
my friends and family members (Ruth – FGD2, female, LL rural). 
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According to the key informant from the Police, she explained that when the Community 
Police team finds out about the parents who are afraid of community ridicule and hide their 
children, they assure them of their support. They are also encouraged to bring their children 
out and to report any security threat that they encounter.  
 
The parents who hide their children in the house once found are cautioned and counseled together with 
their family to help them to overcome any of the challenges that they might be facing in the community 
or at home (Key Information 2 - KAPRA). 
 
Most of the participants expressed their happiness as they have seen the law take action 
against offenders, especially those who calling persons with albinism demeaning names. This 
is a result of the statements made by the President and Inspector General of Police (IGP) 
regarding the protection and abolishment of ridiculing words used to refer to persons with 
albinism:  
 
The IGP made a strong statement that those who make silly comments about us and also those who   
whisper or shout at  ‘dhiru’ or ‘million’ at me… They need to stop or they will risk being punished by 
law. When people started hearing the news that the continuous naming and harassment of persons with 
albinism may lead them to being in jail, most of them stopped because they had seen or heard of people 
being  ailed for calling persons with albinism ‘dhiru’ or ‘million’ (Abraham - FGD3, male, KAPRA – 
LL urban). 
4.3.8 Networking and Peer Support 
Some of the participants stated that the Thursday meetings at the skin clinic provided a sense 
of belonging because they were able to meet their friends with the same condition. These 
meetings also established networks and provided opportunities for sharing experiences about 
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their condition and empowerment. This helped most of the participants to be united as a 
group and to get registered as APAM members.  
 
When I visit the skin clinic, I make a lot of friends and we discuss how to take good care of ourselves. 
APAM volunteers conduct the counseling sessions with us and we feel that we are free to ask about 
any skin problems that we face (James - FGD3, Male, KAPRA- LL urban).  
4.3.9 Acceptance 
The participants said that in most homes, it took a long time for the fathers to come to terms 
and understand the albinism of their children. Most of the participants confirmed that in their 
lived experiences, most of them had little attachment to their fathers compared to their 
mothers. This was dependent on the love and care that they got from both parents and other 
extended family members:   
 
My father did not accept me at first as his child. He had a lot of misunderstandings with my mother. He 
wasn’t sure if I was his child but deep down in his heart, he knew I was his child. He could not take me 
out or have anything to do with me. He was avoiding me as much as possible. His parents told him that 
one of his grandparents had albinism. My father had to slowly adjust to understanding my condition 
because I was the only one with albinism in the family (Lovemore – individual interview, Male - 
APAM). 
 
My immediate family has accepted me as a gift from God. They are always proud of me and treat me 
as their flower in the house. Everyone loves me so much. I enjoy the love from all of my clan members 
(William - FGD1, male, LL rural). 
 
It was revealed by the participants that some of their mothers were heartbroken upon giving 
birth to them. However, they got encouragement and assistance from the missionaries within 
their communities who were able to assist them in caring for the child in the early stages:   
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…my mother was heartbroken when she gave birth to me because she was not sure what people will 
say about her and me. However, she was able to overcome it with the help of the missionaries who 
used to visit her regularly with soap, baby powder and special lotions (James- FGD3, Male, KAPRA- 
LL urban). 
 
However, some of the mothers who were facing ridicule and stigma sent their children with 
albinism away from the household. Some of the family members residing in the city offered 
their support by caring for their sisters’ children. The PWAs were thus able to experience 
love in a new environment.  This was confirmed by the participants who said that: 
 
I grew up with my aunt and she treated me so well and equal to her other pigmented children. I was 
sent to stay with my aunt in the city because the people in the village were treating me badly while in 
the city, they were all excited to have me around them (Thomas - FGD3, male, KAPRA – LL urban) 
 
Furthermore, in communities where they do not stigmatize or sideline persons with albinism, 
the participants were involved in community development projects alongside everyone else 
without prejudice. The participants said that: 
 
I do community development work such as food for work and cash for work.  During the school block 
construction, I helped by fetching water for the builders to mold bricks for school projects as part of a 
community contribution with other women (Sara - FGD3, KAPRA, LL Urban). 
 
Food for work is a government project for community empowerment and it helps us to get cash through 
work… We clear the weeds on the roads to make the roads accessible after the rainy season as directed 
by our chiefs (Aaron - FGD1, male, LL rural). 
 
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In addition, some of the participants mentioned that they cope by involving themselves in 
church activities. This is because they were not segregated by their fellow church members 
and the groups to which they belonged:  
  
I enjoy participating in most of the group activities in my church. Because of this, I am a member of 
the women’s group and I am also in the women’s choir (Abraham- FGD3, male, KAPRA – LL urban). 
 
I am a choir master in my church. I teach my church members how to sing well and I also play piano 
and guitar (Saul- FGD3, male, KAPRA – LL urban). 
4.4   Possible Ways of Improving the Lives of Persons with Albinism 
The persons with albinism approached in this study made some recommendations on the 
possible ways that their lives can be improved. These are efforts that can be implemented by 
themselves, by the government and by non-governmental organizations (NGOs). The 
provision of financial support and the formation of clubs and NGOs specific for people with 
albinism were the themes that emerged. 
4.4.1 Provision of Financial Support 
Most of the participants reported that the provision of money by their parents on a monthly 
basis to go to the hospital to collect sunscreen lotion could help them to detect the early signs 
of skin cancer: 
 
If the families were responsible or knowledgeable enough to provide transport money for their relatives 
to go to the hospital to collect the lotion, then maybe the challenge of skin cancer could be minimized 
(Faith - individual interview, female - MCM). 
 
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The participants also indicated that the organizers of different programs that aim to reach 
them should include transport and per diem in their budget, and that they should also manage 
their time better: 
 
We walk long distances to attend the training and awareness campaigns, yet we are not given transport 
money (Ruth – FGD2, female, LL rural). 
 
...when the NGOs and government officials call us for meetings, they should consider giving us some  
allowance rather than  giving  us nothing when  they call us,  yet they are on per diem... We adhere by 
attending the meetings but most of us come from different villages and very far away. Sometimes we 
have to hire bicycles (Janet- FGD2, female, LL rural). 
 
An NGO called Diwa called us for a meeting starting at 7 am and end at 2pm. They gave us MK500 
(US$0.48) as an allowance, which was very little. Even if it was a government meeting or official, can 
they give their participants that small of an amount for the whole day? (Joshua – FGD1, male, LL 
urban) 
 
It was confirmed by some of the participants that micro-finance institutions do not offer them 
loans because they lack collateral. However, the participants felt that if they could be 
considered for soft loans, then they could establish businesses to enable them to work in the 
shade and to become productive in society: 
 
... Financial institutions such as micro-finance are not willing to offer loans to persons with albinism 
because we are considered already to be of low income status. They think that we cannot manage to 
pay back the loan (Cynthia -individual interview, female - APAM). 
 
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I am in need of financial assistance to help me start a business. However, it is difficult for me to get one 
because those who lend money know that I do not have any proper surety to show in case I fail to pay 
back the loan (Lovemore – individual interview, Male - APAM). 
4.4.2 Formation of Clubs and Specific NGOs for Persons with Albinism 
The formation of a group that will allow them to conduct business as a team under shade was 
suggested by the female participants from one of the focus group discussions. They said that 
this was the best way to enable them to be productive. The participants also indicated that 
these clubs could help them to hold meetings that can allow them to share ideas and plan their 
way forward: 
 
We are planning to meet regularly to discuss the issues that affect us as a team and we will seek to 
overcome them. We also plan to start a project whereby we can mold bricks as a team for each one of 
us to build houses, then we will ask the government to help by including us in the current iron sheet 
subsidy program (Aaron - FGD1, male, LL rural). 
 
... as women with albinism in our area, we are in a process of forming our own club like a village bank 
that will help us identify if a business such as a maize mill will help us to earn something as a group 
(Janet - FGD2, female, LL rural). 
 
Most of the participants indicated that they don’t know which groups they really belong to. 
This is because most groups do not give them a chance to be part of them. The participants 
suggested that they need to belong to a well-established group in order to meet their needs. 
 
Most of the groups, when we want to  oin… they say we don’t qualify. For instance, for HIV/AIDS, 
they say we don’t have HIV/AIDS… for other groups or that we are not elderly or that we are not 
orphans. Even in the persons with a disability group, we are told that we do not have a disability. They 
ask us to prove to them that we have a disability, and   so we are left out like that (Brenda- FGD2, 
female, LL rural). 
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Most of the participants observed that apart from APAM, most organizations do not have an 
interest in understanding their condition in the same way they do other conditions, including 
finding better solutions on their behalf: 
 
There is no organization of pigmented persons which is concerned with the welfare of persons with 
albinism. You will hear them talking on HIV/AIDS, Sickle cell, persons with disability, Human rights, 
gender, but no one will mention persons with albinism (Faith - individual interview, female - MCM)
  
Some of the participants complained that the awareness programs are conducted in areas 
close to the city and on TV, yet most persons with albinism reside in very rural areas where 
they do not have access to television and radios. Therefore, the participants believe that if the 
proper means can be established to reach out to their fellow friends with albinism in very 
rural areas, then this knowledge could help to extend their lifespan.  
 
Awareness programs are mainly for those who live in the cities. In my village, people do not know the 
best care to offer to their children with albinism.  I visited one family and the condition of the children 
was so pathetic (David – FGD1, male, LL rural). 
 
You see, most presentations on albinism are made on television, radio, and newspapers. A lot of people 
in the rural areas do not have electricity and these gadgets, hence they are missing out on this important 
information (Faith - individual interview, female - MCM). 
4.5   Discussion of Findings 
The findings of this study indicate that the persons with albinism encountered challenges in 
relation to their education in various ways. This was due to having difficulty reading the 
textbooks and the blackboard because of their poor eye sight. Poor hygiene was another 
challenge due to the lack of basic materials like soap to bath with and the washing of their 
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school uniforms. The bullying they received, including being called demeaning names by 
their teachers and peers, affected their self-esteem and confidence.  
 
All of these factors lead the persons with albinism to performing poorly in class or even 
dropping out of school. The findings support those by Wan (2003)  and  Hong et al. (2006) 
who found that both teachers and students were the source of mockery and derision that left 
the persons with albinism feeling lonely and isolated. The author further noted that 
psychological and physical victimization, such as bullying and name calling from other 
students, worsened their experience in school.  
 
The findings of this study also reveal that most persons with albinism end up not being in 
formal employment due to having a poor educational attainment that directly results from 
their condition. As a result, most of them experience financial restraints, even though some 
engage in petty jobs like bicycle repairing and small-scale farming, among others. 
 
Additionally, it was found that persons with albinism, together with their families, lacked 
general knowledge on the albinism condition. It was identified by the participants that they 
did not know what causes albinism. However, most of them stated that albinism was a result 
of envy, jealousy and misunderstanding in the clan or community, leading the pregnant 
mothers to being bewitched. Others also noted that albinism is a result of being born to an 
anemic mother.  These varied beliefs affected how the parents, especially the pigmented ones, 
took care of their children with albinism. Many did not take the time to learn how to properly 
care for their children in terms of providing them with protective clothing and sun screen 
lotion, resulting in skin complications. Furthermore, it is surprising that in the current study, 
some of the participants indicated that they had got information about albinism two years ago 
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in 2016 from organizations such as APAM and Tiritonse. These findings are in line with the 
studies conducted by Braathen and Ingstad (2006) and Cruz-Inigo et al. (2011) which  found 
that many persons with albinism do not fully understand their own condition and therefore 
they lack knowledge related to what special aids they need in order to function daily. This 
lack of knowledge meant that there was a lack of vital items needed to function such as 
protective clothing, sunscreen and visual aids.  
 
In the current study, it was observed that the families of persons with albinism lacked 
knowledge on the characteristics of albinism. This was observed during the individual 
interviews that were conducted in the homes of persons with albinism. Most of the family 
members had either a whitish eye color or sandy brown hair with slightly dark skin. 
However, they only referred to one or two persons in their homes who had very light skin as 
being persons with albinism. This lack of knowledge could have led to the ineffective care of 
their condition which may contribute to the late detection of health challenges such as eye 
problems and skin cancers. These problems could have been prevented if they knew that they 
also had the other type of the condition of albinism. 
 
The findings established that persons with albinism are affected economically due to a lack of 
well-paying jobs and businesses that can generate a sufficient income. As a result, most of the 
participants live in abject poverty and are not able to meet their basic needs.  Furthermore, 
their vulnerability is compounded by their condition which limits them when it comes to 
working effectively, especially under the sun.  For those who go into farming as a source of 
income, their productivity is compromised as they work against the common shift times in 
order to avoid the sun’s rays.  To make matters worse, some persons with albinism lose out 
on job opportunities because of the stereotype that they cannot work. This is evident in the 
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work of Bines and Lei (2011) which found that PWAs are disproportionately more affected 
by poverty than other socially disadvantaged groups due to historical exclusion. 
 
The current study found that persons with albinism experience stigma and discrimination in 
various ways which affects their social and psychological wellbeing. It was identified that 
certain terminologies that are used to describe the participants were unpleasant to them, for 
example, ‘Kafide,’ ‘Kafira’ and ‘Kadiri’ (meaning red or different from us). Additionally, 
this study faced a challenge concerning the local terminology that was most appropriate to 
use for persons with albinism during the interviews. Descriptive statements like 
‘Anthuangatiamenewa’ which means ‘people like these ones’ were used by the participants to 
describe persons with albinism.  
 
During the interviews conducted in English, the researcher mistakenly interchanged the 
words “persons with albinism” and “persons living with albinism.” This caused some of the 
participants to feel upset because they were more comfortable being called ‘persons with 
albinism’ (PWA). This finding is further in line with that of the United Nations (2016), which 
found that the term ‘person with albinism’ is appropriate because it puts the individual before 
the condition. These findings relate to those in Bourdieu's ( 2001)  study which state that 
labeling persons with albinism circulated emotions of fear, hatred, disgust, shame, pain and 
ambivalence.  The findings are similar to those of Baker et al. (2010)  who found that 
describing people with albinism as ‘black’ was problematic, given their visible differences to 
other black Africans.  
 
 It was indicated that most of the names given to participants at birth had meanings that were 
attached to the situation into which they were born. The names also reflected how unpleasant 
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the parents felt concerning the kind of child that they had given birth to. Chisoni which 
means ‘Sorrow’ and Misozi which means ‘Tears’ were a few of the names shared by the 
participants.  
 
Further evidence in the study showed that persons with albinism and their mothers were 
isolated by their families, church and communities. In the family, the participants were 
segregated from the rest of their family members who avoided sharing utensils with them like 
spoons, plates and cups because they thought that the PWA’s condition was contagious. 
When it came to the churches they attended, people were not comfortable interacting or 
sitting close to them. In the communities, the landlords feared giving the PWAs 
accommodation because they thought that they would lose other tenants.  Isolation was 
further experienced by the participants when in public places like the market, shops and at 
social gatherings like funerals and weddings. People feared rubbing shoulders or even 
shaking hands with them. 
 
These experiences left them in a lot of pain and experiencing humiliation. The current 
findings corroborate the finding of  Lund et al. (2007)  who found that some people believed 
that if one shared items like utensils or had any physical contact with persons with albinism, 
then he or she would go on to develop the condition. It further supports  Chu's ( 2015) study 
which noted that there were dangerous misconceptions including that the mother of a PWA 
was impregnated by a white man, that the devil had replaced the child with an albino and that  
albinism is contagious,  resulting in both the mother and child being marginalized. 
 
Health-wise, the study established that persons with albinism face visual challenges, hearing 
problems, bleeding of the lips, skin conditions, the non-availability of sun screen lotion, 
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negative attitudes from the health personnel and there being a long distance to the health 
facility. The visual, hearing, and skin challenges limited the participants when it came to 
engaging in productive activities that occur in the sun. This is because the sun results in 
visual impairment and blisters on the skin. Although the bleeding of the lips was not common 
for everyone, those who experienced it felt a lot of pain and often became anemic, which 
worsened their health condition.  
 
The vulnerability of persons with albinism, especially those in the rural areas, was worsened 
by the lack of sun screen lotion. Lotions are mainly available in the central hospitals located 
in the city. Therefore, due to the long distance from the rural area to the central hospitals, 
most participants found an alternative, such as buying cheaper lotions that are not 
recommended for them by health professionals. This action was also because of the lack of 
money to travel to and from the central hospitals. The study findings noted that when the 
participants visited the health facilities, the reception they received from the health 
professionals was poor due to the negative perception and attitudes about albinism. This, in 
the end, reduced the number of persons with albinism who visited the hospital during the skin 
clinic days. The above health challenges experienced by PWAs have been reported in the 
previous studies by Braathen and Ingstad (2006), Christensen et al (2017), Cruz-Inigo et al 
(2011), Nyamu (2014) and Wan (2003). 
 
The emotional challenges identified in the current study were fear, bitterness and marriage 
dissolution. The killings in Malawi brought in fear among the participants, their family and 
the community members. Persons with albinism reported that that they lost trust both in their 
family and in the community members who they thought could have selfish interests leading 
to harm befalling them. On the other hand, their family members, especially their spouses and 
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the community, feared interacting with the participants because they thought that they would 
be suspected of a crime in case anything happened to the person with albinism. The findings 
also indicated that the families of the participants often experienced fear and anxiety 
especially when the killings happened in their communities, resulting in the restriction of the 
movements of their relatives with albinism.  
 
The killings deterred some of the participants from getting married.  This dilemma limited the 
social wellbeing of persons with albinism and the people around them.  This is consistent 
with the findings of Mutasa (2013) who found out that some of the psychosocial challenges 
confronting persons with albinism manifest themselves through the marriage institution. 
Some find that it is complicated to establish a steady marriage owing to the myths and 
misconceptions aggravated by a society that is yet to entirely comprehend their condition.  
 
Another emotional challenge noted by the participants was bitterness, which resulted from 
them not being happy about their albinism condition. Most often, they had many unanswered 
questions as to why they looked different and were therefore treated differently from the rest 
of their family members. They also blamed their parents and community members for being 
the cause of their condition. Furthermore, failed marriages, especially voiced by the female 
participants, left them emotionally affected. Giving birth to a child with albinism resulted in 
abandonment, rejection and insults from their spouses and families. This left the burden of 
responsibility on the mothers as they had to raise their abandoned children alone.  
 
The above findings concur with those of  Masanja, Mvena and Kayunze (2014), where due to 
negative attitudes, persons with albinism suffer rejection by the community and their family, 
and they are killed for their body parts. This further agrees with  Gaigher, Lund and Makuya 
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(2002) who established that choosing a marriage partner is a serious challenge for persons 
with albinism and conflicts in albinism families lead fathers to abandon their homes. It 
further supports Brown and Mankowski (1993) who found that feelings of inadequacy, 
helplessness and hopelessness lead PWAs to experience anger and emotional withdrawal, 
causing depression. 
 
The findings on the challenges faced by persons with albinism relate to the resilience theory 
of Kumpfer (1999) in the sense that stressors or challenges activate the resilience process and 
create a disequilibrium or disruption in the homeostasis of the individual or organizational 
unit (e.g. family, group or community). The degree of stress perceived by the individual 
depends on the perception, cognitive appraisal and interpretation of the stressor as being 
threatening or aversive. In this study, persons with albinism experienced challenges 
concerning individuals, families, community and cultures which hindered them in various 
areas of life, including socially, economically, psychologically, spiritually and health-wise.   
 
The coping strategies adopted by persons with albinism to deal with the challenges that they 
face included awareness programs, advocacy, support from family and friends, personal 
development and care, withdrawal from society, counseling, security, networking and 
acceptance. Organizations such as APAM, DIWA and KAPRA helped the participants to 
cope with living with their condition as they provided them with information on how to take 
care of their skin, how to wear protective gear and in terms of the provision of whistles and 
torches to help them with security. The awareness helped the participants to advocate for 
themselves and also to confront those who treated them differently.  
 
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Also, the participants and their families received psychosocial support through counseling 
from both the hospital and the organizations that support persons with albinism. This helped 
the participants to accept their condition and their families to understand the albinism 
condition well.  The skin clinic days at the hospital enabled the participants to meet with 
others dealing with the same condition. This act promoted networking as they shared ideas 
and encouraged one another. These findings corroborate those from Braathen and Ingstad’s 
(2006) study, which found that some parents were found to support and love their children. 
These findings further agree with those of Cruz-Inigo et al (2011) who found that improved 
security helps persons with albinism to cope and live peacefully. 
 
It was also observed in the current study that some of the participants, both male and female, 
coped by coloring their hair black to avoid being labeled and sidelined by others. This was in 
a bid to look similar to their community members whom they thought were sidelining them 
as a result of the color difference in both their skin and hair. This was also observed in the 
families and communities who had relatives with a very light skin complexion but black hair, 
where only persons with albinism had a different hair color. 
 
The findings above on the coping mechanism adopted by persons with albinism are 
consistent with the resilience theory put forward by Kumpfer (1999). It states that internal 
self-characteristics including internal individual spiritual, cognitive, social/behavioral, 
physical and emotional/affective competencies or strengths are needed to be successful in 
different developmental tasks, cultures and personal environments. Persons with albinism in 
this study utilized the counseling opportunity for emotional and spiritual support by attending 
church sessions and engaging in different church activities. This helped them to cope with the 
numerous challenges that they experienced.   
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The recommendations made by persons with albinism to improve their lives included the 
provision of transport money, the formation of clubs, assistance from NGOs, the provision of 
soft loans and the creation of more awareness targeted at persons with albinism living in rural 
areas. In the current study, it was observed that   relatives and parents of PWA were allowed 
to collect the sunscreen lotion on behalf of their children or relatives provided they bring their 
health passport book in missionary hospitals only unlike government hospitals. Government 
hospital put these measures in place to allow persons with albinism to be screened physically 
by the dermatologist who may be able to detect any skin related problems and treat it 
effectively. However, due to lack of money for transport to major hospitals, the health of 
persons with albinism is compromised and they end up going to hospitals when they are in 
critical condition. In addition, albinism is a genetic condition and in some instances, some of 
the families have more than five members with albinism. It was a financial burden for the 
families to transport all the members to hospital for screening on monthly basis hence their 
insistence that one member of the family should collect the lotion for the rest of the family 
members to alleviate their economic burden on transportation. The participants suggested that 
giving them transport money to go to central hospitals for a medical review and to collect 
sunscreen lotion could help in the early discovery of skin problems like cancer. In addition, 
organizations that are interested in working with them should consider including allowances 
for transport and per diem in their budget, coupled with managing their time for meetings 
effectively. Persons with albinism were of the view that establishing their own business clubs 
will be helpful in enabling them to hold meetings, to share ideas and to work in the shade. 
This will also give them a sense of belonging because currently, most groups do not 
understand where persons with albinism belong.  
 
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The participants also recommended that organizations should be inclusive and that financial 
institutions should offer them soft loans to establish businesses that will enable them to work 
in the shade to increase their level of productivity in society. Furthermore, the participants 
suggested that any awareness programs should be targeted to reach persons with albinism in 
rural areas to aide in extending their lifespan. These findings confirm those of the studies 
previously conducted (Cruz-Inigo et al., 2011; Kromberg, Zwane & Jenkins, 1987; Pooe-
Monyemore et al., 2012) which found that clinical genetic outreach programs in rural areas 
assisted parents in the management of albinism through understanding and  acceptance, thus 
removing ignorance and  superstitions. 
 
The findings above on the recommended ways to improve the lives of persons with albinism 
support Kumpfer's (1999)  resilience theory where positive outcomes or successfu1 1ife 
adaptations in relation to specific developmental tasks are noted to be supportive of later 
positive adaptations within specific new developmental tasks. This leads to a higher 
likelihood of reaching the global designation in adulthood as a "resilient child or adult". Thus 
persons with albinism in this study who bounced back from the challenges that they faced 
were able to be resilient. Positive outcomes such as success in their academic career, 
advocating for others and advising their colleagues about albinism were additionally 
identified.  
  
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CHAPTER 5 
SUMMARY OF THE FINDINGS, CONCLUSIONS AND RECOMMENDATIONS 
Introduction 
This chapter starts with a summary of the key findings of the study which are based on the 
objectives of the study. The chapter then outlines the conclusions as well as the 
recommendations of this study. The last part of the chapter suggests areas for further 
research. 
5.1 Summary of the Findings 
The study investigated the following objectives: a) to identify the challenges faced by persons 
with albinism in Lilongwe District, Malawi, b) to find out the coping mechanisms of persons 
with albinism in Lilongwe District, Malawi and c) to ascertain recommendations from 
persons with albinism that can be used to improve their living status in Lilongwe District, 
Malawi. 
 
It was found that persons with albinism face various challenges. Some experienced 
educational challenges and dropped out of school at the lower primary level because of their 
inability to see the blackboard or read the textbooks due to the small font size. The study 
found that the undesirable attitude of their teachers and peers in school, related to bullying 
and deplorable name-calling, contributed to their poor academic performance. This led the 
persons with albinism to lose interest in continuing with their education, which is a vital part 
of their future life when it comes to gaining employment. The education challenges also 
contributed to their poor financial status which means that they live in abject poverty and are 
sidelined in the decision-making undertaken in the society. 
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This study found that persons with albinism, together with their families, lacked general 
knowledge on the albinism. It was found that they did not know what caused albinism. It was 
established in this study that more information on awareness and programs on albinism 
started targeting persons with albinism in 2016 from organizations such as APAM and 
Tiritonse as a result of the widespread news on the killings of PWA.  
 
Aside from these challenges, it was found that persons with albinism were unable to work 
effectively outside in the sun. This challenge affects their productivity and leads them to 
remain socially disadvantaged as they do not have enough resources available compared to 
pigmented persons. Additionally, it was found that they experienced stigma and 
discrimination in various ways that affected their social and psychological wellbeing. This 
makes them feel disappointed, frustrated and angry.  
 
They were also affected emotionally by the demeaning names given to them by their peers 
and community members as well as the birth names given to them by their parents. 
Sometimes these names had negative connotations, reflecting how unpleasant it was to have 
given birth to a child with albinism. The study also found that there was a challenge related to 
the local terminology where persons with albinism were referred to using descriptive 
statements. The use of the words ‘persons with albinism’ was found to be appropriate 
because it puts the individual before the condition unlike the phrase ‘persons living with 
albinism.’ 
 
The study found that persons with albinism and their mothers were isolated by their family 
members who did not want to share utensils for fear of catching albinism. In churches and 
communities, people were afraid and not comfortable interacting with them. In addition, due 
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to the killings in Malawi, persons with albinism feared for their lives and they lost trust both 
in their family and in their community members who they thought could have selfish 
interests. It was found that the breaking of the marriage vows especially affected the female 
participants emotionally. Giving birth to a child with albinism resulted in abandonment, 
rejection and insults from both spouses and families. This left a huge responsibility on the 
mothers as they had to take care of their abandoned children alone. Furthermore, the study 
found visual challenges, hearing problems, the bleeding of the lips, skin conditions, the non-
availability of sun screen lotion, the negative attitudes of the health personnel and the long 
distance to the health facility to be the major health challenges faced by persons with 
albinism.  
 
Kumpfer's resilience theory (1999) states that the external environmental context includes the 
balance and interaction of salient risk, protective factors and the processes involved in the 
individual external environment within the critical domains of influence (i.e. family, 
community, culture, school and peer groups). These change with age and they are specific to 
culture, geographic location and historical period. Persons with albinism may fail to cope 
with the challenges faced due to a lack of support that could otherwise help them to balance 
between their problems and the solutions available. For instance, if in the early years of life 
both the individual and the external environment fail to understand albinism, then demeaning 
names, stigma, discrimination and rejection are more likely to develop. 
 
Furthermore, the study found that the coping strategies that persons with albinism have 
adopted to deal with the challenges they face include awareness programs, advocacy, support 
from their family and friends, personal development and care, withdrawal, counseling, 
security, networking and acceptance. These coping strategies helped some of them to accept 
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their condition and they also helped their families understand albinism as well. It also opened 
up links for socialization with other individuals with the albinism condition and allowed them 
to share their experiences. The findings above on the coping mechanisms adopted by persons 
with albinism are consistent with the resilience theory by Kumpfer (1999). This theory states 
that internal self-characteristics that include internal, individual, spiritual, cognitive, 
social/behavioral, physical and emotional/affective competencies or strengths are needed to 
be successful in different developmental tasks, cultures and personal environments. Persons 
with albinism also have the internal strength and desire to cope with the challenges around 
them if they are given external support. Socially, persons with albinism interact with, 
encourage and get support from one another and also from NGOs. 
 
Finally, this study found that the recommendations made by persons with albinism included 
the provision of transport money by their parents to enable them to go to central hospitals for 
a medical review and to collect sunscreen lotion. Attending hospital appointments could help 
in the early discovery of skin conditions and the formation of clubs to enable the sharing of 
ideas to promote entrepreneurism to improve their productivity. NGOs can assist by 
advocating for them and including them in their operations. Financial institutions can 
consider providing soft loans for the purpose of entrepreneurship. Lastly, awareness 
programs can be used to reach other persons with albinism living in rural areas so then their 
lives can be improved. 
5.2 Conclusions 
The findings of this study show that the education challenges faced by persons with albinism 
are because of a lack of conducive learning environments in schools. The attitudes of their 
peers, teachers and family have also made them drop out of school. As a result of a lack of 
understanding of albinism by both their family and the persons with albinism, there is an 
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increased vulnerability in relation to their health because they are not able to access the 
required medical attention in time.  
 
As shown in the findings of this study, persons with albinism cannot afford to meet their 
health needs because of travel distance from rural areas to the central hospitals that provide 
sunscreen lotion, zinc and a review of their skin condition. Persons with albinism have to 
work against the sun and this limits their productivity.  
 
Furthermore, the study findings revealed that persons with albinism are able to cope with the 
challenges they face.  Awareness programs conducted by NGOs have played a role in 
teaching them how to take care of themselves in terms of their condition and how to accept 
themselves. Though others have coped by withdrawing, it helped them to heal from their 
emotions and to bounce back well. Persons with albinism get support from their family and 
friends through networking, counseling and the provision of security.   
 
It can therefore be concluded that the recommendations suggested by persons with albinism 
including the formation of clubs, access to soft loans, the provision of transport money to go 
to hospital and awareness programs could be sustainable if applied. These suggestions are 
what they feel can help them to improve their livelihood. 
5.3 Recommendations 
This study provides useful insights into the challenges faced by persons with albinism and 
how they cope with their condition. Based on the findings in this study, the following 
recommendations can be made. 
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This study shows that most of the participants experienced challenges in relation to their 
education. Therefore, it is recommended that governments should provide conducive learning 
environments for persons with albinism. This may include classrooms with good lighting, 
learning under shade in classrooms, the provision of large print text books and extra support 
from the teachers in areas that the PWA do not understand. Governments should introduce 
lessons and a curriculum framework on the different gene defects and equal rights from lower 
primary school onwards to enable young learners to understand the different health concerns 
and conditions involved. The Government of Malawi should consider introducing special 
adult literacy classes for persons with albinism to enable them to learn how to read and write. 
Vocational training centers should be allowed to teach them practical hands-on skills, 
irrespective of their academic qualifications. This is important because persons with albinism 
should be able to read and write, which will add extra knowledge to their daily lives. 
 
Different stakeholders working with persons with albinism should explain the issues 
concerning albinism in simple terms. This is because despite the level of awareness that 
NGOs have been raising in rural communities, communication remains a barrier as most 
persons with albinism do not understand their condition. 
Persons with albinism are economically disadvantaged, therefore it is recommended for the 
government to include them under the groups that are supported by affirmative actions when 
job vacancies arise. The lack of transport money to access medical care can be managed if the 
Ministry of Health collaborates with the local skin and eye department to conduct joint 
mobile clinic services in rural areas. This can be done in liaison with health surveillance 
assistants (HSAs) based in the community. It is further recommended for the government to 
deploy dermatologists and optometrists to rural hospitals where most persons with albinism 
live.  
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It is recommended by this study to find out if there is a consensus from persons with albinism 
to let society know of the rightful and befitting term to call them. The study recommends that 
financial institutions in Malawi should consider giving soft loans to persons with albinism. 
This should come with business training and financial   management. 
5.4 Implications for Social Work Practice 
Social workers should develop an understanding of the different types of gene defect in the 
lives of people in the community and how to handle them effectively by reading and 
conducting research. For instance, the social worker should advocate for early morning or 
late afternoon meetings and training when such activities include persons with albinism. This 
is as the sun limits their productivity and it is also a health hazard to their lives. 
 
Social workers have various roles to play in society such as advocates, brokers, empowers 
and educators. Marginalized populations, such as persons with albinism, are normally 
voiceless and they need an advocate to speak on their behalf. Social workers as advocates can 
work together with community agents of change, education workers and healthcare workers 
to stand up for persons with albinism to ensure that they get access to proper medical care 
and conducive learning environments in order to promote productivity. This could be 
addressed by informing the local leaders of the need to request development funding from the 
local parliamentary member to be used in this needy area. In addition, the challenges should 
be presented in parliament by the approached member of parliament in order to seek further 
assistance. The study identified there to be a lack of adequate knowledge on the cause of 
albinism. Based on this finding, it is recommended that social workers as educators should 
conduct on sensitization programs whereby both persons with albinism and the wider 
community members are educated on the condition of albinism. 
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 It is clear from this study that some of the participants experienced shame, fear, stigma and 
discrimination which led them to cope by isolating themselves and withdrawing from 
community activities. Social workers should conduct counseling and further connect such 
people to psychologists to help them rebuild themselves. In addition, social worker should 
encourage persons with albinism to attend meetings at a skin clinic and APAM meetings for 
the purpose of socialization and support.  
 
There is a crucial need for research in this area to be conducted by social workers. Persons 
with albinism face discrimination and vulnerability in most areas of their lives. The 
professional values of the social work profession and its commitment to social justice places 
social workers in an ideal position to provide advocacy, lobbying, educational campaigns and 
upholding the rights of persons with albinism. There is a need for social workers to conduct 
further research on persons with albinism in different geographical areas. 
 
  
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Appendix 1: Interview Guide for Participants (English and Chichewa language) 
Understanding the living experiences of persons with albinism in Malawi 
My name is Thandiwe Tambala Kaliati an Mphil student of University of Ghana, Social 
Work Department. This study seeks to gather information about the living experiences of 
persons with albinism in Lilongwe district. The information could assist the government and 
other NGOs to develop policies and intervention strategies that can solve the social 
challenges faced by person with albinism in the country. Thank you very much for your co-
operation. 
 
Ine Thandiwe Tambala Kaliati  ndine  wophunzira  waku  University of  Ghana, kumalo 
komwe  amaphunzitsa  ukadaulo  wothandiza  kukhala   bwino   kwa anthu  mamdera. Ine  
ndiri pakafukufuku  mu Lilongwe wokhuza  mavuto  muchikhalidwe  chaanthu  achialibino  
malingana  ndimmene  adabadwira,  amakhala  bwanji mu moyo  wawo  watsiku  ndi  tsiku  
ndipo  Kafukufuku  ameneyu  athandiza  kuunikira oyendetsa  ntchito  zaulangizi  waanthu  
mmadera,  boma  ndi  anthu  omwe  adabadwa  ndi  alibino  ndi  ena  onse  kupeza  
dongosololo  moyenera  kulitsata  kuti  ntchito  yawoyo  ikathe  kuthandiza  bwino  anthu  
ena.  
 
a. Demographic information /Mawanga a ofunsidwa mu kafukufuku. 
1. Could you please tell me about yourself, (Age, where do you come from, place of birth). 
Mungandifotokozere tsatane  tsatane  mbiri  yanu.  (zaka  zanu  zobadwa, komwe 
munabadwira  komwe mumachokera. 
 
2. Could you please tell me about your parents, (probe on if they have albinism or not)? 
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Mungandilongosolere  bwinobwino  zamakoloanu. (kufunitsitsa  kudziwa  ngati  
anabadwa   ndi  alibino). 
 
3. Are your parents staying together? If not what was the cause of the separation? 
Ndingofuna  nditadziwa  ngati  makolo  anu  ali  limodzi? Ngati  Sali  limodzi  
chinawalekanitsa  ndi  chani  ngati  mukudziwa. 
4. Do you have any history of albinism in your clan? 
Kumtundu kwanu   kuli  mbiri  ya  achialibino ngati? 
5. How many siblings do you have? 
Munabandwa  anthu  angati  mubanja  mwanu?  
6. How many of your siblings have albinism?  What is their sex?  (Probe: female how many 
and male how many)? 
Ndiabale anu  angati  omwe  anabadwa  ndi  alibino?  Ndiwati? (akazi  kapena  
amphongo  ndi  angati)? 
7. What is your marital status? 
Muli  pa  banja  kapena   ayi? 
8. Are you married to a person with albinism or not? And what made you marry a 
pigmented woman or woman with albinism? 
Ngati   munakwatiwa,   munakwatiwa  kapena  kukwatidwa  ndi  bambo  kapena  mayi 
wachi alibino?  Chinakupangitsani  kusankha  motero  chinali  chani?  
9. How many children do you have? 
Muli   ndi  ana  angati? 
10. How many children were born with albinism and their sex? 
Mwa   anawo  ndi angati  anabadwa  ali ma  alibino? 
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11. How many children were born without   albinism and their sex? 
Ndipo  ndi  angati  anabadwa   opanda  chialibino  ndipo  iwowa ndii amuna  kapema a 
kazi? 
b. Individual challenges faced by person with albinism. 
1. Could you please share your experience as a person with albinism? 
Tandilongosolerani  mmene  munakulira pokkhala  munthu  wa alibino? 
2. What do you think albinism is 
Kodi mukamamva kuti alibino inu mumati ndi chani? 
3. What is/are the cause/s of this condition? 
Kaya mumadziwa chiri chonse chomwe chimapangitsa munthu  kukhala wa alibino? 
4. Where did you learn of your condition? From who? 
Kodi zachialibino munaphunzirira kuti? Ndipo kuchokera  kwa  ndani? 
5. How do you feel about being a person with albinism? 
Mumamva  bwanji  kukhala  munthu  wachi  alibino? 
6. How does albinism affect your life? (probe) 
Ndipo zimakukhudzani bwanji  mumoyo wanu? (kufunsinsinsa) 
7. Could you please tell me the social challenges that you face in your daily life? (Probe e.g. 
health, education, social, stigma and physical)?  
Ndimavuto  anji omwe mumakumana  nawo pamoyo  wanu  wa  tsiku  ndi  tsiku ( mu  
umoyo, mmaphunziro, chikhalidwe, kusalidwa  ndi mthupi)? 
8. Do you experience any health, related challenges?  
Muli ndi mavuto ena aliwonse  okhudzana ndi  zaumoyo wanu? Ndipo ndi   mavuto  anji? 
c. Family challenges faced by person with albinism 
1. How does your family understand your condition? 
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Banja lanu  limamvetsetsa   bwanji za alibino? 
2. How  do they treat  you in your family compared to your  brothers and sisters without 
albinism 
Ku banja kwanu  mumakhalitsana bwanji  ndiazibale anu  kutengera  kuti inu ndi 
achilibino? 
3. Could you describe the challenges the family faces as a result of your albinism? 
Mungandilongosolere mavuto omwe  mumakumana  nao kubanja  kwanu? 
d. Community challenges faced by person with albinism 
1. Could you please tell me any social activities that you are involved in your community?     
What are the activities? 
  Mumatenga   nao magawo otani  mudera mwanu? 
5.0 Do you experience any limitations with any of the social activities in your communities? 
What are the limitations?  
Pamakhala zoletsa ziri zones ngati potenga nao mbali muzochitika kumadera anu? Ngati  
ziripo   ndizichani?  
6.0 Are you included in any leadership position in the community? 
Mumaikidwa  nao mumautsogoleri mu zochitika  mmidzi  mwanu? 
7.0 Could you explain your attachment to your community and how do people in your 
community treat you?? 
Mumakhalitsana  bwanji  ndi  anthu  aku  midzi  yanu? 
8.0 What are the reactions of strangers towards your condition in your community and other 
communities? 
Alendo  obwera  mmidzi  yanu  amakuona  bwanji? 
e. Society challenges faced by person with albinism 
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1. What are the challenges that you experience from government, non -governmental 
organizations and institutions with regard to your condition? 
Mavuto  anji  mumakumana  nao  kuchokera  ku  boma,  mabungwe  osiyana  siyana 
kutengera   mmene  munabadwira? 
2. How is your social life being affected with/out their intervention? 
Moyo  wanu  umakhuzika  bwanji   ndizochitika  ngati  zimenezi? 
3. Are there any employment opportunities for you in the society? (Probe –what are the 
limitations)? 
Kodi  mwai  wa  ntchito   umapezeka? (ngati   ai  mavuto  omwe  mumakumana  nao  ndi 
ati)? 
4. What kind of work do you do and why? 
Ntchito  zomwe   mumagwira  ndi  zamtundu   wanji? 
5. What kind of job will be suitable for you? 
Ndintchito zanji zomwe mumaona zimakuyanjani? 
6. Do you belong to any group in your community? (Probe – what is the name of the group, 
how do you join, what do they do)? 
Munalowa nao mugulu lina  liri lonse  kudera  kwanuko?  (dzina la guru  ndi chani  
ndipo  zokuyenerezani  kulowa  nao ndi chani ndipo  mumapanga chani  ku guruko)? 
7. What are the challenges you face in joining community groups? 
Alipo  mavuro  ngati  omwe  munakumana  nao  polowa  maguluwa? 
8. Could you describe to me how the awareness and advocacy strategies have impacted your 
life? 
Kodi zidziwitso  za alibino zakuthandizani motani kapeni ai? 
 
 
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f. Cultural challenges faced by person with albinism 
1. What form of stigma and discrimination do you face in your life? 
Mumasalidwa munjira zotani  mu moyo  wanu? 
2. Do you know any myths about the causes of albinism? 
Mumadziwako zikhulupiriro zina ziri zonse zokhudzana ndi chomwe   chipamgitsa 
munthu  kukhala  wa  alibino? 
3. Do you experience any cultural challenges in your life? 
Mumakumana  ndi  mavuto  achikhalidwe  ndi  dzikhulupiriro  za  makolo? 
4. Have you ever been attacked or abused? 
Munakumanako  ndi  nkhaza  zina  ziri  zonse  pa  moyo  wanu? 
g. Coping mechanism adopted by persons with albinism 
1. How do you cope with the challenges you face with your condition, health, education, 
physical, social and family? 
Mumathana bwanji ndi mavuto omwe mumakumana nao  chifukwa cha   thupi lanu   mu 
umoyo , maphunziro, thupi, chikhalidwe  and  banja lanu? 
2. How do your family, community, society and culture cope with your condition? 
Banja lanu, dera lanu, mzinda wanu andi chikhalidwe chanu amakwanitsa bwanji 
pokhalirana limodzi ndi anthu achialibino? 
3. How do you cope yourself with your condtion?  
Mumazipansa chisamaliro chanji panokha? 
4. What type of support do you receive from your family/community/society and culture 
practices? 
Abale, mudzi ndi chikhalidwe chokuzungulirani  chimakupatsani chithandizo chotani 
pokhudzan andi kubadwa kwanu ndi chialibino? 
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5. What challenges do you face in getting the support? 
Ndimavuto anji omwe  mumakumana  ano  pofuna  thandizo? 
6. What change has the support received brought into your life (Positive or negative)? 
Mathandizo omwe  mukulandira akupindurirani chani? 
7. How do you access the needed support? 
Mumapeza bwanji thandizo lofunika? 
8. What type of support do you require? (Probe  -  From where and by who) 
Koma inu mumafuna thandizo lanji ( kuchokera kuti ndipo ndi ndani)? 
9. What cultural changes would you like to hear? (Probe – how can it be done?) 
Zikhalidwe  ndi zikhulupiriro zanji zomwe mumafuna  mutanza zitatha? 
k. Recommendations 
1. Do you have any recommendation with regard to your conditions? 
Mungandiuze malangizo omwe mumafunira  anthu kapena mabungwe 
angamakugwirireni  bwino  kutengera   mmene  munabadwira  ndi  alibino? 
2. Where the recommendation should be addressed to? 
Malangizo  amenewa  apite  kwa  ndani? 
 
Thank you! 
  
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Appendix 1a: Interview Guide for the Key Informants (English and Chichewa 
language) 
Understanding the living experiences of persons with albinism in Malawi 
My name is Thandiwe Tambala Kaliati, an MPhil student of University of Ghana, Social 
Work Department. This study seeks to gather information about the living experiences of 
persons with albinism in Lilongwe District. The information could assist the government and 
other NGOs to develop policies and intervention strategies that can solve the social 
challenges faced by person with albinism in the country. Thank you very much for your co-
operation. 
 
Ine Thandiwe Tambala Kaliati  ndine  wophunzira  waku  University of  Ghana, kumalo 
komwe  amaphunzitsa  ukadaulo  wothandiza  kukhala   bwino   kwa anthu  mamdera. Ine  
ndiri pakafukufuku  mu Lilongwe wokhuza  mavuto  muchikhalidwe  chaanthu  achialibino  
malingana  ndimmene  adabadwira,  amakhala  bwanji mu moyo  wawo  watsiku  ndi  tsiku  
ndipo  Kafukufuku  ameneyu  athandiza  kuunikira oyendetsa  ntchito  zaulangizi  waanthu  
mmadera,  boma  ndi  anthu  omwe  adabadwa  ndi  alibino  ndi  ena  onse  kupeza  
dongosololo  moyenera  kulitsata  kuti  ntchito  yawoyo  ikathe  kuthandiza  bwino  anthu  
ena.  
---------------------------------------------------------------------------------------------------------------- 
1. Could you please share your experience working with person with albinism? 
Mungandilongosolereko  zomwe mumakumana nazo  pogwira  ntchito  ndi  anthu a  
chilibino? 
 
2.  Do you think persons with albinism understand their condition and its causes? 
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Mukukhala nao anthu achialibino, mumaona ngati amamvetsetsa za momwe 
anabadwira?  Ngati samvetsatsa  mukoona  kuti  chingakhale  chani  chomwe  
chimapangitsa? 
3. What are the social challenges do you think they experience in their daily life? (Probe e.g. 
health, education, social, stigma and physical)?  
Mukuona kwanu  amakumana ndi  mavuto anji? (mu umoyo wawo, maphunziro, 
chikhalidwe,  kusalidwa  ndi  pathupi  pao)? 
4. Do you think their families understand albinism condition? 
Mumaona  ngati  ku  mabanja  awo  azibale  ao  amamvetsetsa ualibino? 
5. Could you please tell me any social activities that you are involved in with persons with 
albinism?  
Mumagwirana nao ntchito zanji anthu  achialibinowa? 
6. What are the challenges that you experience from government, non -governmental 
organizations and institutions in working with persons with albinism? 
Mumakumana ndi  mavuto anji pogwira ntchito ndi anthu achialibino kuchokera ku  
boma, mabungwe osiyana siyana? 
7. What kind of support do you offer persons with albinism to cope with the challenges they 
face? 
Mumawathandiza bwanji anthu achialibino kuti  athane  ndi mavuto omwe  amakuna 
nao? 
8. How do persons with albinism access the needed support? 
Thandizoli  mumalipeza  kuti? 
 
3. Do you have any recommendation that will improve the lives of persons with albinism? 
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Upangiri wanu  pofuna kukonza njira zokonza umoyo wabwino wa anthu achialibino 
ungakhale otani? 
Thank you! 
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Appendix 2:  Letter of approval from the University of Ghana 
  
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Appendix 3: Letter of approval from Malawi Ethics committee 
 
REF.NO.NCST/RTT/2/6       9th March, 2018  
C/O Volta River Aviation  
PMB CT 216  
Cantonments  
Accra  
Ghana  
 
Dear Thandiwe Tambala-Kaliati,  
 
RESEARCH ETHICS AND REGULATORY APPROVAL AND PERMIT FOR 
PROTOCOL NO. P.01/18/243: LIVED EXPERIENCES OF PERSONS WITH 
ALBINISM IN LILONGWE DISTRICT, MALAWI  
 
I am pleased to inform you that the above referred research study has officially been 
approved. You may now proceed with its implementation. Should there be any amendments 
to the approved protocol in the course of implementing it, you shall be required to seek 
approval of such amendments before implementation of the same.  
 
This approval is valid for one year from the date of issuance of this letter. If the study goes 
beyond one year, an annual approval for continuation shall be required to be sought from the 
National Committee on Research Ethics in the Social Sciences and Humanities (NCRSH) in a 
format that is available at the Secretariat. Once the study is finalized, you are required to 
furnish the Committee and the Commission with a final report of the study. The committee 
reserves the right to carry out compliance inspection of this approved protocol at any time as 
may be deemed by it. As such, you are expected to properly maintain all study documents 
including consent forms.  
 
Wishing you a successful implementation of your study.  
Yours Sincerely,  
 
Mike Kachedwa 
HEAD OF NCRSH SECRETARIAT  
For: CHAIRMAN OF NCRSH  
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Appendix 4:  Participant Information Sheet 
Living experiences of persons with albinism in Lilongwe – Malawi 
 
Dear Participant, 
I am Thandiwe Tambala-Kaliati, a Masters student at the University of Ghana in the Faculty 
of Social Sciences, Department of Social Work. I intend to undertake a research project on 
the above subject in fulfillment of an MPhil in Social Work.  
 
I am conducting this study to learn about the social challenges, coping strategies and support 
systems available for persons with albinism. The study will be conducted in Lilongwe, 
Malawi.  
 
You have been chosen by chance to participate in the study. I want to assure you that all of 
your answers will be kept strictly secret. I will not keep a record of your name or address. 
You have the right to stop the interview at any time, or to skip any questions that you don’t 
want to answer. There are no right or wrong answers. Some of the topics may be difficult to 
discuss, but other persons with albinism have found it useful to have the opportunity to talk. 
 
You may not directly benefit from the study. Your participation is completely voluntary but 
your experiences could be very helpful to other persons with albinism in Malawi.  You 
qualify for participation if you are aged eighteen or more and you have albinism. You will be 
interviewed for a period of about 45 minutes to one hour and in case of focus group 
discussion the interviews may take up to 2hours and 30 minutes. You may withdraw from the 
study at any point without penalty. All information collected is confidential and will be used 
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for research purposes only. In addition, data collected will be anonymous. At the end, a hat as 
a token of thanks/appreciation will be given to the respondents. 
 
Note: 
If you have any questions regarding your rights and welfare as a research participant, please 
contact the following person: 
The Chairperson 
National Commission for Science and Technology 
Lingadzi House, City Centre 
Private Bag B303 
LILONGWE 3 
Malawi 
Telephone: 002651771 550 
Fax: 002651772 431 
Email: directorgeneral@ncst.mw 
Website: www.ncst.mw 
 
Thank you for your assistance. 
 
 
Thandiwe Tambala- Kaliati 
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Appendix 4a:  Kalata  Yomudziwitsa  Munthu  Wotenga  Mbali za Kafukufukuyi 
Okondeka, 
Ine  ndine  Thandiwe Tambala Kaliati  ndipo ndili   pakafukufuku  wokhuza  mavuto  
muchikhalidwe  chaanthu  achialibino  malingana  ndimmene  adabadwira, amakhala  bwanji 
mu moyo  wawo  watsiku  ndi  tsiku  ndipo  ndi  chithandizo  chanji  chomwe   amapeza  
pamoyo  wao  watsiku  ndi  tsiku. 
 
Kafukufuku  ameneyu  athandiza  kuunikira  oyendetsa  ntchito  zaulangizi  waanthu  
mmadera,  boma  ndi  anthu  omwe  adabadwa  ndi  alibino  ndiena  onse  kupeza  dongosolo  
loyenera  kulitsata  kuti  ntchito  yawoyo  ikathe  kuthandiza  bwino  anthu  ena.  
 
Kutenga  nawo  mbali  mukafukufuku  ameneyu  ndi kofunika  kwambiri  chifukwa  
zitithandiza  kudziwa  zambiri pa mutu  umenewu. Ndinu  oyenera  kutenga  nawo  mbali  
ngati  munabadwa  ndi  alibino,  zaka  zakubadwa  kuyambira  khumi  ndizisanu  ndi  zitatu 
(18) kupitilira.    Mufunsidwa  mafunso  kwa  pafupifupi  mphindi  makumi  anayi  ndi  
zisanu (45) kufika ola  limodzi.  Ngati  mukutenga nao  mbali   mu zokambirana  zagulu  
nthawi  yokambirana  itha  kuchulukirapo  kufika  mawora awiri   ndi  makumi  atatu  
malingana  ndi   momwe  zokambirana  zikuyendera.  
 
Kutenga  mbali  kwanu  mukafukufukuyu  nkosakakamizidwa.  Muli ndi  ufulu  kukana  
kapenanso  kusiyira  pakati  kafukufuku  asanathe ndipo  simuzalandira  chilango   
chillichonse.  Zokambirana  zonse  zidzasungidwa  mwachinsinsi  komanso  zidzagwira  
ntchito  yakafukufukuyi  basi. Poonjezera  apo  zomwe  mudzafotokoze  zidzasungidwa  
popanda kudziwa  dzina  lanu. 
 
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Zokambirana  zathu   zidzakhudza  mafunso  ena  amene  mwina  mungakhale  omangika  
kuyankha  kapena  osasangalala  nawo  chifukwa  ndi  mafunso  omwe  akukhudzaza  
nkhanza  ndi  zipsinjo  zomwe  munadutsamo.  Anthu  omwe  anabadwa  ndi  alibino  ambiri  
anachiona  chofuni  kakukamba  zankhaniyi.  Koma  ngati  mukuona  kuti  mafunso  oterewa  
anga  kukhumudwitseni,   muli  omasuka  kukana  ngati  mumatenganawo  mbali 
m’kafukufukuyi.   Komanso  mulindi  ufulu  kufunsa  mafunso  ena  alionse  okhudza  
kafukufukuyi.    Pakutha  pazonse, otenga  nawo  gawo  mukafukufukuyi  sadzathokozedwa  
ndi   china   chirichonse. 
 
Ngati  muli  ndi  mafunso  komanso  madandaulo  okhudza  ufulu  wanu  mukafukufukuyu,   
mutha  kufunsa    woyang’anira  zaufulu  waotenga  mbali  mu  kafukufuku  pa  Keyalaiyi: 
The Chairperson 
National Commission for Science and Technology 
Lingadzi House, City Centre 
Private Bag B303 
LILONGWE 3 
Malawi 
Telephone: 002651771 550 
Fax: 002651772 431 
Email: directorgeneral@ncst.mw 
Website: www.ncst.mw 
Zikomo  kwambiri  chifukwa  chotithandiza. 
 
Thandiwe Tambala- Kaliati 
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Appendix 5: Informed Consent for Participation in the Study 
This study seeks to learn about the social challenges, coping strategies and support systems 
available for persons with albinism. The study will be conducted in Lilongwe, Malawi. As 
stated in the invitation to participate letter, the study may remind you of some horrible 
situations you went through, which may bring distress, embarrassment and some kind of 
panic; please feel free to explain and you will be assisted accordingly. The main potential 
benefits of the study are that it will contribute to knowledge on the topic and the knowledge 
gained may also help in designing effective programmes aiming at helping persons with 
albinism in their social life. No costs or payments are associated with participating in the 
study. 
 
Based on the information provided regarding the research project, I understand that: 
1. The time required for the interview is about forty-five minutes to one hour. 
2. My participation is entirely voluntary and I may terminate my involvement at any time 
without penalty. 
3. All my data are confidential and the data will be destroyed within five years after 
completion of the study. 
4. All data are for research purposes only. 
5. If I have questions about the research, or if I would like to see a copy of the final findings 
of the study, I can contact the researcher by calling him on the number given or write to him 
on the address given. 
I _______________________________voluntarily agree or disagree to participate in this 
study *(Please select the appropriate option by circling or ticking)*.  
Date: ____________________________Witness signature *(if participant is unable to 
write)*:_____________________________ Date: ____________________________ 
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Signature of investigator: ____________________ Date: _______________ 
Further information is available from 
Name of investigator:  Thandiwe Tambala- Kaliati 
Address: University of Ghana, P O Box LG419, Legon, Accra, Ghana. Phone: 
00233266824860  
Name of Supervisor: Dr. K Frimpong-Manso. (Senior Lecturer) 
Address: University of Ghana, P O Box LG 419, Legon, Accra, Ghana.  
Phone: 00233243908246 
 
  
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Appendix 5a: Kuvomereza  Kutenga  Nawo  Mbali  M’kafukufuku 
Monga  ndamvera  mukalata  yomwe  ndawerenga /mwandiwerengera  ija,   ndamvetsetsa  
kuti  Kafukufukuyi  ndi  wofuna  kudziwa  mavuto   wokhuza  m’chikhalidwe  cha anthu a 
chi alibino  malingana  ndi  mmene  adabadwira, amakhala  bwanji mu moyo  wawo  watsiku  
ndi  tsiku  ndipo  ndi  chithandizo  chanji  chomwe  amapeza  pamoyo  wao  watsiku  ndi 
tsiku. 
 
Kafukufuku  ameneyu  athandiza  kuunikira  oyendetsa  ntchito  zaulangizi  WA anthu  
am’madera,     boma  ndi  anthu  omwe  adabadwa  ndi  alibino  ndi  ena  onse  kupeza  
dongosolo  lomwe  ayenera  kulitsata  kuti  ntchito  yawo yo   ikathe  kuthandiza  bwino  
anthu  ena. 
 
Kafukufukuyi  atha  kukukumbutsani  zina zosasangalatsa  zomwe  zinakuchitikirani,   
chonde  masukani kunena  kuti  muthandizidwe  moyenera.   Palibe  choti  mupereke  
potenga   nawo  gawo  mukafukufukuyi.   
 
Malinga  ndi  zina  zomwe   ndawerenga/ mwandiwerengera,   ndamvetsetsa  kuti:- 
1. Kukambirana  kwathu  nkwamphindi  makumi  anayi  ndi  asanu  kufika   ola  limodzi; 
2.Kutenga   mbali  kwanga  nkosaumirizidwa  ndipo  ndingathe  kusiya  nthawi   ina  iliyonse  
yomwe  ine  ndafuna; 
3. Zokambirana  zizasungidwa  chinsinsi  ndipo  zidzaonongedwa   pakatha  zakazisanu. 
4.  Zokambirana  zidzagwiritsidwa  ntchito  pakafukufuku  yekhayu  basi; 
5.Ngati   pali  funso  nditha  kufunsa  nthawi  ina  ili  yonse  pogwiritsa  ntchito  nambala  
yalamya  kapena  keyala  zomwe  zaperekedwa. 
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Choncho  Ine_____________________________mwaufuluwangandavomera / ndakana  
kutenga  nawo  mbali   mu kafukufuku  ameneyu.*(Chonde  zunguzani  kapena  chongani  
yankho  loyenera)*. 
Tsiku  Lofunsidwa: _______________  
Mboni*(ngati  otenga  mbali  sangathe  kulemba) :__________________________ 
Tsiku__________ 
Dzina   la   Wofufuza: ______________________________________ 
Tsiku  Lofunsa: _______________________ 
Ngati  mutafuna  kudziwazina, funsani  anthu  awa 
Mwini  wakafukufuku:  Thandiwe   Tambala-Kaliati 
Keyala:  University of Ghana,  
 P  O Box LG25 
  Legon 
 Accra,  
Ghana.  
Phone: 00233266824860  
Woyangánira: Dr.   K   Frimpong-Manso. (Mphunzitsi) 
Keyala:  University of Ghana 
  P  O Box LG 25 
Legon 
Accra 
Ghana.  
 Phone: 00233243908246 
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