i 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 University of Ghana http://ugspace.ug.edu.gh 1 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 University of Ghana http://ugspace.ug.edu.gh 2 University of Ghana http://ugspace.ug.edu.gh 3 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. University of Ghana http://ugspace.ug.edu.gh 4 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. University of Ghana http://ugspace.ug.edu.gh 5 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. University of Ghana http://ugspace.ug.edu.gh 6 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 University of Ghana http://ugspace.ug.edu.gh 7 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 University of Ghana http://ugspace.ug.edu.gh 8 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 University of Ghana http://ugspace.ug.edu.gh 9 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 University of Ghana http://ugspace.ug.edu.gh 10 LIST OF TABLES Table 1: Data source ................................................................................................................ 45 Table 2: Demographic characteristics of the participants ...................................................... 55 University of Ghana http://ugspace.ug.edu.gh 11 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 University of Ghana http://ugspace.ug.edu.gh 12 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. University of Ghana http://ugspace.ug.edu.gh 13 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 University of Ghana http://ugspace.ug.edu.gh 14 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 University of Ghana http://ugspace.ug.edu.gh http://www.ncbi.nlm.gov/ 15 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 University of Ghana http://ugspace.ug.edu.gh 16 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 University of Ghana http://ugspace.ug.edu.gh 17 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 University of Ghana http://ugspace.ug.edu.gh 18 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 University of Ghana http://ugspace.ug.edu.gh http://www.actionalbinism.org/ 19 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 first International Albinism Awareness Day (IAAD) was held on June 13 th 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 University of Ghana http://ugspace.ug.edu.gh 20 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. University of Ghana http://ugspace.ug.edu.gh 21 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. University of Ghana http://ugspace.ug.edu.gh 22 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. University of Ghana http://ugspace.ug.edu.gh 23 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, University of Ghana http://ugspace.ug.edu.gh 24 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 University of Ghana http://ugspace.ug.edu.gh 25 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 University of Ghana http://ugspace.ug.edu.gh 26 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 University of Ghana http://ugspace.ug.edu.gh 27 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. University of Ghana http://ugspace.ug.edu.gh 28 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 University of Ghana http://ugspace.ug.edu.gh 29 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 University of Ghana http://ugspace.ug.edu.gh 30 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 University of Ghana http://ugspace.ug.edu.gh 31 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 University of Ghana http://ugspace.ug.edu.gh 32 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 University of Ghana http://ugspace.ug.edu.gh 33 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 University of Ghana http://ugspace.ug.edu.gh 34 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. University of Ghana http://ugspace.ug.edu.gh 35 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. University of Ghana http://ugspace.ug.edu.gh 36 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. University of Ghana http://ugspace.ug.edu.gh 37 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. University of Ghana http://ugspace.ug.edu.gh 38 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. University of Ghana http://ugspace.ug.edu.gh 39 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 University of Ghana http://ugspace.ug.edu.gh 40 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 University of Ghana http://ugspace.ug.edu.gh 41 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 University of Ghana http://ugspace.ug.edu.gh 42 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. University of Ghana http://ugspace.ug.edu.gh 43 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 University of Ghana http://ugspace.ug.edu.gh 44 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 Engaged Female Male FGD 1- men only (APAM) 8 0 8 FGD 2 - female only (APAM) 6 6 0 FGD 3 - Mixed (male and female) (KAPRA) 6 3 3 Individual interviews with the PWAs ( 3 MCM and 4 APAM) 7 4 3 Individual interviews with the key informants (APM, KAPRA and MCM) 3 2 1 Total 30 15 15 University of Ghana http://ugspace.ug.edu.gh 45 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. University of Ghana http://ugspace.ug.edu.gh 46 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 University of Ghana http://ugspace.ug.edu.gh 47 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 University of Ghana http://ugspace.ug.edu.gh 48 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 males and six females from the Lilongwe District rural area on 11 th January 2018. One mixed gender focus group discussion comprised of three males and three females was conducted on 16 th 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. University of Ghana http://ugspace.ug.edu.gh 49 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 University of Ghana http://ugspace.ug.edu.gh 50 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 on 18 th and 19 th January 2018. Three individual interviews were conducted at the MCM offices on 24 th 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 University of Ghana http://ugspace.ug.edu.gh 51 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. University of Ghana http://ugspace.ug.edu.gh 52 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 wor